Long Time Living: Living with Breast Cancer

Bits and Pieces

2012-03-03T20:12:00.000-08:00

I've been "chatting" with CAX over on the Advanced Breast Cancer site.....CAX is living in Norway and is having difficulty getting anyone to look at her as a whole person. She has doctors for her heart condition, she has doctors looking after her for the series of blood clots she had, and nerve damage. She's frustrated because the doctors don't seem to talk to each other and share information.

Boy, do I know how that feels. I find that you really have to fight for it, and sometimes you will alienate those who are supposedly looking after you. I am particularly confused at times when something happens and I can't tell if it is a side effect or just something which has come my way....so I often opt to visit the my general practitioner rather than driving down to my oncologist who is farther away.

You really have to keep the whole person in focus in front of the doctor's eyes. I think this is a major problem in today's medicine. We aren't treating the person as a whole, we aren't having all the specialists working well together and the person who loses is the patient. Annoying.

We have the same problem here as in Europe. Go figure.

However, I did get a little charge out of visiting my GP on Friday for my back pain. He used his reflect hammer to test the neural response on both of my knees....of course, nothing moved. The nerves are very damaged. I know that. I've been trying to tell people that...but when the doctor sees the extent of the damage himself....well, I get a little chuckle at seeing his eyebrows raise.

Fear and Loathing

2012-03-01T21:09:00.002-08:00

On the Inspire site, a site for "advanced breast cancer" patient (survivor? Metavivor???) support a number of posts or discussions have been up lately about sex and husbands...well, one was about a husband of a late stage cancer patient who was wondering why other husbands were showing up on the site, and two others were about sex and the cancer patient.

It was good to see frank discussions about this....mostly about us feeling badly for our husbands that we didn't have any sexual drive, found that sex was painful, and that they were just in this position at all....having a wife who wasn't in good health. A number of us were quite young...even though I'm not young now, I was when I started out on this journey.

One woman said that "sex doesn't have to be penetration." I commented that I "got" that, but because of the lack of estrogen from long term removal of my ovaries, I'm not even really interested...and I feel that I'm sort of cheating my husband.....

Her comment back a little bit later was that we were being selfish and filled with self-pity. Bull-pucky. That's not it at all. I am wistful that things aren't different, and I do feel that my husband has gotten the short end of the stick. I really feel that she doesn't understand....and she may not have the same issues...there ARE people on that site which are stage III, or haven't had their ovaries removed or whatever....

I also have been struggling with getting people to understand what a stage IV diagnosis means....and that while I have hair, it doesn't mean that I am not fighting cancer. Trying to get them to understand that we are more inclined than the average patient to feel like "the other shoe is about to drop." I went to the A Wear Affair, a fund raiser for Noble Circle in Dayton which included a fashion show....as they said the names and the number of years they had "thrived" with cancer....I must admit to feeling a bit jaded as people clapped for people who had had lesser diagnosis or shorter years out....and knowing that there were very few people in the room who really understood and maybe felt the same as I....fortunately, I was sitting with another MBCer.... ah well.....yes, I guess on some days I do feel a little jealous....maybe I'm just getting tired of fighting the battle.

And then there is the desire to get somewhere back on even keel. Wondering if you'll be able to do it...trying to find the "new normal." Praying that the drugs which are working continue to work and maybe that the pain would go away.

And yah....Adinfinitum sent me a sample of organic lubricant called "Valera." I have to admit...I'm afraid to use it.....gotta get up the courage....years of pain makes it a little difficult to even think about.....

Poison?

2012-02-20T13:22:00.000-08:00

I have been reading lots of posts on the Metatastic Breast Cancer site (Inspire) where they refer to Adriamycin as "the red devil" and other chemos as poison.

I have to admit, it makes me cringe. I guess because I felt that by calling the drugs by nasty monikers, it somehow made it worse....maybe it sets your mind up to create more difficult side effects.

Yes, they are tough. But I always looked at it that they had to be tough to kill the cancer cells, I was just determined to be tougher.

Chemo and cancer are scary enough....we don't have to make them scarier. But that's just me...

It's kind of like this....Foxglove..a gorgeous plant, the source for the chemical digitalis which is very beneficial to many heart patients.....but digitalis, is also poison....yet, I don't think that many heart patients refer to it as poison....of course, many do refer to warfarin (coumadin) as rat poison...but then that's what it is. ;)

Lymphedivas Compression Sleeves and Gauntlets

2012-02-08T13:30:00.000-08:00

Last spring, much to my surprise, I developed lymphedema in my hand 17 years after having the axillary dissection to remove lymph nodes to test to see if the cancer had spread. I only had 13 removed and the surgeon said then that lymphedema was less common than it once was.

Lymphedema is the swelling of a body part (usually arms and legs but I've heard of others who have had damage to their lymphatic systems elsewhere have developed it). In Western countries, the most common people to get it are those who have had axillary dissection and/or radiation. The lymphatic fluids aren't carried away because the pathways have been disrupted. They collect and cause swelling, often resulting in pain, and can result in thickening of the skin and other problems.

I didn't give it much thought, but was careful to not allow blood pressure to be taken on that arm since that can cause lymphedema. This spring, I was appalled to notice that my hand had swollen. I was on chemotherapy and developed an infection in my fingernails and that brought on the lymphedema.

It wasn't terribly serious, but I was worried and went to one therapist who fitted me with the above glove. She told me that if the fingers on it bothered me, just to cut them off.

Not exactly thrilling to look at, is it? In fact, I looked like a moldy Michael Jackson. I also felt like it didn't do much. Granted, it seemed like the swelling was pretty much limited to my hand. After one visit, and the glove I went on my way.

It seemed like it was getting worse, and I decided to to to a different therapist. That therapist gave me a lot more exercises and explained that sometimes the lack of range of motion and tightness of the muscles increases lymphedema. She also told me about Lymphedivas compression sleeves and gloves, which are called gauntlets (yah, as in throw down the... :) ).

As I mentioned in my original post, Rachel Levin Troxell, and Robin Miller, breast cancer patients who suffered from lymphedema started Lymphedivas because they wanted a more stylish alternative to the compression sleeves and gloves out there. Robin left the company in 2007, and Rachel continued.

One of my high school friends commented that people saw her lymphedema sleeve and thought she was a burn victim. It's bad enough all the indignities that cancer survivors have, we don't need another ugly garment as well.

Lymphedema sleeves and gloves aren't cheap..In fact, when I originally posted, I commented that I would have to wait or that maybe Santa would be nice.

Well...that comment got the ball rolling. Long time biking buddy Jean Zaniewski who married our best man contacted Lymphedivas about getting a gift certificate to give me for Christmas....they didn't have any. When she told them about me and about the blog, Josh Levin, Rachel's little brother and president of the company emailed me and said that he'd provide a set so I could review them here.

One of the things which I thought was cool first was the fact that you could get them in skin tones which would more readily match your own skin tone. I just couldn't imagine a darker skinned person being happy with a sleeve or glove the color of my first one. Josh said that that was the point, but that they are stamped with the color, rather than being dyed in the yarn or cloth so there is an issue with some un-evenness when it stretches or on seams.

I must admit, I wasn't interested in the skin tones...I wanted FUN. I mean really, if we have to wear these things, let them be fun AND comfortable. Here one of their models is wearing a leopard print. Take a look on the website and see all their patterned pieces.

They also have them in solid colors (hot pink, black and white) and you can have a dazzly diamond pattern on them as well..I'm not much for razzle dazzle...

But I do have an unconventional streak and the blue lotus tatoo is what I have chosen. I'm a visual person, and most of the comments I've gotten from people have to do with the fact that they think I have a tatoo! One lady looked at the back of my hand and said "Oh, that must have hurt....wait, it's NOT a tatoo!"
I admit, it made me giggle. Here's the gauntlet after I wore it about the same amount of time as the ugly one above. Both were washed the same amount of time so you can draw conclusions as to the wear-ability of one, over the other.

The Lymphediva's version was very comfortable and I felt it was DOING something. Since I got these in winter, I can't speak to how cool they are, but they are made from fabric from the trademark owners of Lycra and Coolmax, both of which are old friends of mine from my bicycling days and I can attest that this is better than the stuff the other thing was made from.

There is some pilling on the hand of the Lymphediva product, but it isn't as bad as the one on the other and you have to understand I use my hands A LOT. I wear it when I'm cleaning house, sewing (I'm a quilter, so you want to talk about pins???), brushing the cat, blah blah blah. No holds barred here. I don't think any fiber can make it through my work out unless it was Kevlar, and that wouldn't make a very good lymphedema glove.

Their fabric is made of a 360 degree stretch knit which prevents binding, and certainly I haven't experienced any of that. Aloe vera fabric finishing has been added (unscented) to help moisturize. I don't know how effective this is over time, I wonder if it would eventually wear/wash out....but I really can't fault the comfort of these!

Rachel developed these items because she felt that they wouldn't do any good if they sat in a drawer and if we didn't like them we wouldn't wear them. I can attest to that. Did I mention how comfortable they are????

Lymphedivas compression sleeves and gauntlets are made in the U.S.A of American fabrics, shipped by an American company but are happy to ship world wide for those of you are are interested in such things. They are the little guys....Jobst and others making this type of thing are not U.S. companies and are HUGE.

I have to say I wear these much more than my other THING and it is much more comfortable. You can get them online from Lymphedivas, but they also have links to retail stores and online sales elsewhere. Right now they are sold in about 250 retail places around the world. Their website has a lot of information and information on sizing, although I'll tell you you HAVE to have someone measure you. You can't do it yourself and I'd go so far as to say that if you have a Lymphedema therapist, they would be a good person to have measure you for one.

They come in 2 compression measurements and you'll need to know which you need....again, a therapist question.

Yes, they are expensive, and I don't know about how insurance would play into it.....However, if you sign on to the Lymphediva website, they do have specials from time to time. Right now they are having a Cupid's Sale several of their pink toned gloves/sleeves are on sale and a limited edition crystal heart is available on the solid and natural colors for an additional $15 from now until they run out or Feb. 14th. Also, buying the combinations of gauntlet and sleeve together will save you some. Lastly, they do sell seconds, and they have a clearance section which can also save you some cash.

And yes....I would buy them again and I will.

You owe it to yourself to go to the Lymphediva website and read about Rachel, and go through all the information there is there. Its fascinating, although Rachel's blog is heart breaking as well. I would have loved to have met her. Unfortunately, Rachel died from a recurrence January, 2008 at age 37. Her parents and brother have continued the company. I'm really glad she created this company. I'm grateful to Josh for the time he has spent talking to me about the products and for giving me the opportunity to share what I think about them with you.

Oh yeah...and as a disclaimer: Lymphediva's supplied me with the gauntlet, sleeve and informational materials. I have not been compensated for this review, nor do I have any connection with the company other than I'm very happy with their product and think its really cool!

Think in Higher Level Terms

2012-01-27T20:58:00.000-08:00

Sometimes I find the most profound thoughts and information applicable to surviving cancer or thriving in spite of it in the most interesting places.

Today, I was reading an article in The Smithsonian Magazine on Henry Morton Stanley, the explorer of "Dr. Livingston, I presume?" fame. I enjoy the Smithsonian magazine and my mom gets it for me for Christmas every year. The article is called "Breaker of Rocks" and is by Roy F. Baumeister and John Teirney
(Smithsonian, December 2011, vol 42, no. 6, pps. 78 - 86).

The article was talking about Stanley's perseverance in spite of poor conditions, failing health and starvation. He was able to survive because he focused on greater things...in his case, he quoted a line of Tennyson's poetry...and urged his men to keep that in mind. Here's what the article said:

"...his approach embodied an acknowledged principle of self-control: Focus on lofty thoughts.
"This strategy was tested at New York University by researchers including Kentaro Fujita and Yaacov Trope. They found that self-control improved among people who were encouraged to think in high-level terms (Why do you maintina good health?), and got worse among those who thought in lower-level terms (How do you maintain good health?)" (page 86).

In other words, if we focus not on "I need to lose weight and I'll do this by not eating that chocolate truffle," to "I want to be the healthiest I can be, I have a great deal to accomplish in life. I WANT to be healthy. I will eat healthily" then you have a fighting chance at actually succeeding. Ok..so they said it better than I did in the article but I didn't want to quote a passage any longer than I did...

But hey...focus on "I will be healthy." What can it hurt?

For more information on the Smithsonian Magazine, check out Smithsonian.com.

Things People Say.....

2012-01-20T09:33:00.000-08:00

I've talked before about the odd things people say and do when they discover you have breast cancer....but sometimes it DOES produce some funny moments.

Take, for instance, something which happened to me in December. My daughter needed some new bras and she had coupons (gotta love coupons) to Victoria's Secret. Although it makes me grump as I think they are over priced, and I myself wear the 24 in a package for $15 white cotton underwear which could be alternatively used as sails in a pinch on a sailboat (ok...I'm exaggerating on all accounts, especially when I discovered my husband's cotton t-shirts (Hanes) had risen to $15 for a three pack and I HAVE lost weight), I acknowledge that 1. she is young. 2. they do fit her rather than guessing at what size she wears and my daughter, while slim, is very curvaceous. So, I, the cash cow, goes into the shop where I DON'T shop...and stand politely waiting outside the dressing rooms with pocket book in hand.

Now, if you haven't figured it out by now, one of my favorite colors is red orange. And I love Red orange (or red) Fedoras. Since my hair is still very short, but now beginning to look like someone who chooses to wear it that way....I wear a hat wherever I go.

So...while I was waiting....the cute young thing who is staffing the dressing rooms looks at me and softly says..."Do you mind if I ask you a personal question? I don't want to offend you....." Now, me, having been bald for a year plus thinks she's going to ask if I was a cancer patient....especially since I was standing beneath a sign for breast cancer something or another (don't all stores have their prerequisite PINK section???). I said yes, it was probably what she was thinking....She said "WOW! You don't look old enough!" To have cancer? I asked..."I first got it when I was 34." "NO!" says she, "to be a member of the Red Had Society. You have Cancer?"

Ooops....so I assumed wrong. And I didn't FEEL old enough to be able to join the Red Hat Society.....although after looking it up today, I discovered that you have to be over 50....which I now am...hunh, who'da thought?

Then I was emailed this video today I had to share it...there's some pretty amusing things here, and despite the title, no profanity...the person who sent it also said that someone should develop a similar video for dumb stuff people say to people who have metatastic cancer...and said that "Well, you could be hit by a bus" should be at the top...I don't necessarily agree with that as I DO think that "Well you could be hit by a bus" is a good way of looking at it....meaning, we won't necessarily die of cancer, but we WILL die some day...and it could just as easily be a bus! And yah...there are some real benefits to being bald...as long as its not in winter. ;)

Blindsided

2012-01-18T14:35:00.000-08:00

I'm feeling very blue...and upset...and scared. All of these emotions are a bit unusual for me as, if you haven't figured out already, I'm a very optimistic person. My optimism, however, has been shaken.

On Monday, I got up to be surprised to find my husband in the kitchen....He had gone to work, only to be called into an office and to be told that he was no longer employed.

So now, here I am....a stage IV cancer fighter struggling with trying to figure out how COBRA works for a company which self-insures. Praying that my husband, who is now 52, can find a new job and quickly and that the new job will insure me. Knowing that fighting it is silly as nothing can be proven. Knowing that money is what makes the world go around and anyone who thinks any differently, or thinks that there isn't a problem with health insurance/health care in the US, is really sticking their heads in the sand.

Short of that? I'll try to find a job....which is problematic since I can't walk well anymore nor can I be on my feet for any length of time because of the issues with my pelvis....and in this economy, finding a job for someone who was once a museum curator and has these problems...well....it's going to be a struggle...providing I can even do it.

So yah, like this quilt, I have the blues and the greys....The little quilt is an optical illusion quilt in a pattern called "tumbling blocks" or "baby's blocks." It was made by an Amish woman in the 1980s. I recently sold it on eBay. I'm guessing I'll be doing a whole lot more of that.

Plateaus aren't for the Faint of Heart

2012-01-13T19:48:00.000-08:00

Plateau?

I got a call a week ago from my oncologist who was practically bubbling over...."How was your Christmas?" Fine...."GREAT! Well....this is the first opportunity I've had to call in between patients and you were the first one on my list that I wanted to reach....Your tumor markers were 214 in December and Tuesday (Jan. 3) they were 237! The tamoxifen seems to be working and you've hit a plateau."

I told him that I would have rathered it be much less....and that I was sort of flipping out about the whole thing...and that I was sorry that I wasn't satisfied.

You see, I'm kind of prejudiced against Tamoxifen....and I'm not liking the whole concept of waiting. It is much easier to be a warrior wielding a sword than standing at the front of a battle line waiting for the command to "charge."

I was on Tamoxifen years ago...and it didn't work for me. Current information indicates that sometimes those who are on aromatase inhibitors (such as Armidex and Aromasin, both of which I was on) and have failed, sometimes the cancer is tricked into taking the Tamoxifen after switching off the A.I.s However, the die is cast and I've painted Tamoxifen as a "wimpy drug."

I'm experiencing discomfort in my spine, my shoulder and my sternum, all locations of metastesis. My knee hurts as does my ankle from time to time....and my hip can be the source of a great deal of pain....but that's the area of most active issue and the location of a cancer caused break in the acetabulum (the cup part where the head of the femur fits into the socket). The knee and the ankle is more probably caused by the 1/2 difference in the leg length because of the break and my listing gait it causes.

So...the plan is to wait....a P.E.T. scan now wouldn't probably accurately show what's happening as it is expected you have a tumor flare for the first couple of months that you're on Tamoxifen (I started on my 21st anniversary on Oct. 13). I will have my markers checked again on Feb. 2, and if there is improvement in the markers (i.e. they drop) then I will continue with Tamoxifen as long as it continues to work. If they rise, then I'll have a P.E.T. scan.

I'd really rather bring in the heavy infantry and blast this damned disease out of my system. However, sometimes the battles are won by being patient.

I am coming to terms with this....I find it interesting that I often don't think of having cancer even now...I am upset by the lack of stamina that I have. My neighbors came over and helped paint my master bedroom (a project which has been in the making since I purchased the paint...and the house...in 2005). I moved furniture. I'm still dragging because I got so tired....and I'm still a little sore from using muscles that I haven't used in the last year.

However, telling any warrior that they have to be patient is easier said than done.

In the midst of decay, Life.

2012-01-03T06:48:00.000-08:00

I love old barns...and I hate to see them fall or be torn down. I do enjoy photographing them and am often taken by the contrast between decay and growing things....

I admit, I've been really thrown for a loop in the last couple of weeks....something that cancer survivors (especially metavivors) do often. Today, Robert Gunn published the following in his newsletter for artists, and I think it is worthwhile to focus on.

"During the past year, Canada's Leader of the Opposition, Jack Layton, died of cancer at the age of 61. In his final message Jack said, 'My friends, love is better than anger. Hope is better than fear. Optimism is better than despair. So let us be loving, hopeful and optimistic. And we'll change the world.'"

So, allow yourself fearful days, but focus on the hopeful. It may be difficult, but your life, in the end, will be much more pleasurable...continue the fight...and enjoy the respites.

Frustrations

2011-12-31T20:23:00.000-08:00

The holidays are often difficult times for many, but especially for people who are struggling with cancer. I have heard people comment over and over about how they fear that the present holiday will be their last. This comes from people who are fighting recurrences, as well as those who have found cancer in its early stages for the first time.

It's understandable...it's painful. I sometimes feel very wistful at this time of year. When letters from high school and college friends come speaking of the various running races, hiking adventures, renewed physical activity, the trips they've taken to exotic places....I read it and smile..I'm happy for them, but I also wonder what it would be like to have a normal life....one like theirs. One which would allow me to run again....one which didn't include me wondering if the pain I have in my sternum is from more bone lesions and advancement of the disease.

But then, I think that for many, their lives have had other problems. Broken marriages, affairs, no children for people who really wanted them, or in the case of my high school classmate Terri Flanders, death at age 48 from breast cancer. Often, we gloss over others sorrows and troubles....which in fact, for them, have been as devastating as our battle. It doesn't diminish our fear, trials and tribulations....but very few people actually are able to go through life without some sort of trauma.

My current trauma is one of great frustration. I have been on Tamoxifen since October 13 in response to the fact that my tumor markers rose dramatically in October indicating that the cancer was active and growing again. I don't have much faith in Tamoxifen for me, but others have had very good luck with it after being on aromatase inhibitors for any length of time. However, I felt that the disease has been growing.

I was told to expect a "flare" during the first two months, then it might start dropping, if it worked.....I would be tested on January 3rd to see if the Tamoxifen was working, and if not, then I would have a P.E.T. scan as soon as possible and then start Xeloda.

Unlike my oncologist in Connecticut, my oncologist here travels between three offices. He works 4 days a week. When I have a blood draw or a question, unless I track him down at whatever office he is at, usually I have to wait until he gets back into the office where I had the test and usually see him, which can take several days depending on when I have tried to contact him. In addition, when you have tumor markers tested, the blood is drawn and sent to the labs in batches. If you are number 1, it can take a while for the 50 samples to accrue. Then again, I would have to wait until the P.E.T. scan is done before starting on the new chemotherapy.

So...on Friday, I called to see if I could go in and get my blood drawn from my port early, so that when my doctor came back into the office on Tuesday, I could get the ball rolling just a little bit faster. I was told that they only had three nurses in the chemo room (I have a port and very bad veins from all the chemo I've had and so it is often very difficult for the lab techs to be able to draw blood and it is usually a better idea just to go straight to the chemo room) and that it really wasn't possible. Later that day, there was a message on the answering machine asking that since I was to have a port flush and a blood draw, couldn't I please wait and come in on Jan. 6 because they were going to be so busy because of the holidays.

While I am usually accommodating, I called back and said that although I understood their position, I was having tumor markers done and it was very important to me to get the ball rolling as I was fairly sure that they had risen. As a concession, I would try to get it drawn in the lab, rather than the chemo room, but since my veins are so small and difficult to find, it is likely I will end up in the chemo room to be accessed anyway.

This did not please the nurse with whom I was speaking. I could tell by her voice that she thought I was being unreasonable. I have waited for three months. In the last three days, my sternum has been hurting and a rib...both places where there are bone metastasis. I feel that I need to get some better medications going and that if I don't, it will impact my ability to pull out of this one....I really would rather being around for a while longer. I don't see why it should be so hard to get what I, and any other patient in a similar position, deserves. Of course, I suppose it is also colored by the loss of one of my Noble Sister friends to pancreatic cancer earlier this week.

So yeah....I've had a pretty cloudy outlook lately....and those clouds? Mammulus clouds...pretty appropriate aren't they?

A Song For you to Contemplate

2011-12-23T21:37:00.000-08:00

A friend of mine posted this on Facebook...and since I'm in the dark ages and was too busy with other things to really catch this when it was released in 2006, I am really taken with it now. Remember, tomorrow is a whole new day. Enjoy.

More on Lymphedema

2011-12-20T22:13:00.000-08:00

I've been thinking a lot about lymphedema lately....partly because I've been "bad" and haven't been doing my exercises and my hand is a bit puffy because of it....and partly because of an almost serendipitous happening.

I spoke of Lymphediva's lymphedema compression sleeves and gloves in an older post here. A long-time biking friend saw it and thought it would make a great Christmas gift if she got me a gift certificate so I could get those patterned "gauntlets" , only to her surprise, there was not provision for that. She contacted the company and explained....and they asked her for my contact information so I could review their products! YAY! AND...if you're thinking about what to give someone for Christmas....they now have the gift certificate button added to their website.

The gloves arrived on Saturday, and so far, I've been pretty impressed....but I am going to wait to give my full review after I've worn it for a while...washed it, etc.

But...back to my thinking. To review, lymphedema is what happens when the lymphatic system is disrupted for some reason and instead of the body properly channeling the lymphatic fluid (which is part of your body's filtering process) out, it builds up causing swelling. It frequently happens with women who have had breast cancer as they have had lymphnodes removed in axillary dissections. Trauma, whether it be from a bug bite, or a blood pressure cuff can cause it to show up. In my case, it waited 17 years before arriving this spring quite probably because of an infection I got in my fingernails which in turn was caused by the chemotherapy.

However, there might be another reason...but my reasoning may be slightly flawed. When I went to the lymphedema therapist, she said that my shoulder and musculature was tight, more than the other arm....I'm wondering if part of the lymphedema may have been caused by my inactivity.

You see, I'm an avid gardener and lift, haul, move and do a lot of physical labor in my garden. Except last year, since my hip hurt so badly and because of the chemotherapy, I didn't do as much gardening, even in the fall...I'm wondering if the lack of a work out and thus the tighter muscles may have added to the problem...

At any rate, I have exercises I am supposed to do...and do them I must. One of the hard things about lymphedema is that the patient is the one who is responsible for taking care of it....we need to monitor it, we need to do the exercises and be vigilance in protecting that arm. But then...that's what we are supposed to do to take care of ourselves anyway.

Why the river? Well...that's supposed to represent the body's lymphatic system....flowing away.

Caring for the Caregiver

2011-12-16T21:27:00.000-08:00

I've often thought that the caregiver, or significant others of the cancer patient is often overlooked. While the patient has a whole cadre of people who are actively fighting the disease, and has assistance, the significant others, the care givers, and often the immediate family doesn't have the support system nor the understanding that the patient has at their fingertips.

The caregiver often has to care for a very sick individual, making sure that they pick up the daily chores and responsibilities that the patient is not able to do. They also worry, and often feel the need to make sure they stay positive while watching the ones they care for struggle through the side effects and onslaught of disease.

Dave Balch has written quite a bit on this. In fact, he is the author of Cancer for Two and has written many articles and columns as a result of his being the caregiver during his wife's cancer. You can read his biography here. He has also made available a free newsletter called "Caring and Coping." He started the Patient Partner Project which has a website, and yes, you have to sign in, but there's lots of good information and assistance in dealing with the issues that those of us who are in the struggle face. www.patientpartnerproject.org

Another is http://www.copinguniversity.com/

I admit, I haven't had the time to go through all of these sites and read everything...but I like what I see so far, and really...while we need to take care of ourselves, the caregiver needs some help too. Dave Balch, who took care of his wife through four bouts of breast cancer, certainly earned his stripes. Maybe you or someone you know can benefit from the resources he has made available.

Second Opinions....senses of urgency.....

2011-12-12T20:59:00.000-08:00

On Oct. 13, my 21st wedding anniversary, I started a treatment of 20 mg. of Tamoxifen to try to kill off the cancer. According to my oncologist, sometimes it causes a tumor flare up during the first 8 weeks, and after that point has proven useful for killing off the cancer in stage IV patients.

Well, fooey. My markers have risen dramatically....39 in Sept., 79 in October and now..as of Dec. 2, 214. Still...he wants me to continue and to see him in February.

Meanwhile, my neck and shoulders are getting stiff. Sort of scary. Obviously, my close friends and family are getting nervous....well...my parents and sister at least, and they've started asking about second opinions.

So...I guess I'm going to go to my oncologist and tell him that I need the surgical removal of my family from my back and that I would like to get a second opinion....and ask him who he would recommend. I don't want this to be a vote of no confidence, because my doc really does keep up on the latest and employs it...I was a bit nervous when I told him that I thought I could beat this and get 5 - 10 more years, but was nervous about waiting to bring in the reinforcements until I was too far gone to pull me back. When he said he thought I could beat it as well...he dropped his eyes and didn't look me in the face. Now, that's scary. So....I guess a phone call is in order tomorrow.

If I don't keep at it...then who will?

Be Like Oskar

2011-12-03T19:29:00.000-08:00

One of my friends on facebook posted this video a while ago. Watch what happens when Oskar, who was born blind (his eyes weren't fully developed) gets his first toy....I was taken by how he seems lethargic...until his world is opened.

I I
I hope you can take a similar stance. While we have been dealt blows, and face a scary future, there's joy and fun still to be had.

Lymphedivas

2011-11-29T19:15:00.000-08:00

For the last several months, I admit to having lust in my heart....but I have to wait. When I was getting therapy for my lymphedema, the therapist showed me these AWESOME lymphedema gloves. Designed by a lymphedema patient, these sleeves and gloves ROCK! You've got to take a look:

http://store.lymphedivas.com/store/pc/home.asp

They aren't cheap...but I don't know how much the regular ones cost....But....when I get enough money I'm going to get me a set! I think I want the Lotus Dragon tattoo....but I could also get the purple paisley, the White Vercache, the Sunburst, or the Nouveau.....but I wish the Nouveau was in turquoise or purple....Hmmm...things to think about....and to save my pennies for!

Maybe Santa would be so kind....

The Mrs. Tiggy Winkle Effect

2011-11-25T20:18:00.000-08:00

My hair has come back thicker....but with more grey. Maggie and Lourdes keep on saying that it isn't grey, it's "ashy". There's a lot of light colored fluff up there....and when I take a shower and wash my hair it sort of sticks together in funny little pointy things.

I look for all the world like Mrs. Tiggy Winkle.

Here is Mrs. Tiggy Winkle for those of you who might not have read Beatrix Potter beyond the Tale of Peter Rabbit. Mrs. Tiggy Winkle is a hedgehog who was a laundress in Miss Potter's stories. She was based on a Scottish washer woman....and frankly, because of the roundness and the pointy hair, I feel very much like Mrs. Tiggy Winkle.

One good thing though is that the steroids are finally leaving me. My face is much less puffy than it once was. I still need to lose some weight, but I am 20 pounds lighter than when I started this most recent ordeal.

Here's a real hedgehog....and I really do think my hair resembles this....although at present, it is getting long enough to start curling so it stands out, much like the wisps which poke through Mrs. T-W's bonnet.

Every other time my hair has come back, it has curled ...tightly....so, this will probably do the same. My daughter gets great amusement by running her hands over my head as my hair is very fine and therefore soft. It's really thick, and there's a lot of it, but it is as soft as baby's hair right now.

Take a look at this lovely little example of Mrs. Tiggy Winkle. As I have said before, living with cancer is always an adventure.

Things that Get My Goat

2011-11-23T20:16:00.000-08:00

No, this goat hasn't been bisected....it's the electric fence separating him from me....and frankly, given those horns, I'm a tad grateful for it.

Dawn (Calming scents) left a comment on my previous post. I went to her blog and discovered that she too has advanced breast cancer. I'm not liking how she found out (advanced pain) and I always dislike it when doctors start saying "if you're lucky, you'll have (fill in the blank) amount of time. Why? No one knows. We could get hit by a car, eat a bad piece of turkey, or have a heart attack.

In addition, we could have amazing genes and amazing ability to recover. Heck, we might even be a recipient of a miracle or two.

I also don't believe that "God plans all of this. He wouldn't give it to me unless there was a plan." Well, balderdash. If God (or your higher power or whatever) is supposed to be a gracious and loving persona, then HE (or SHE) doesn't WANT us to have pain and suffering, we are the objects of a cosmic crap shoot. However, I do believe that "God", "Your Higher Power," or whatever, can help us deal with a bad hand of cards AND it can be turned to something positive.

Putting us intentionally in this situation? No way. I don't know of any father, heavenly or otherwise, who purports to be loving would want us to be in the dire straights that we as mortal beings find ourselves in. Yes, I'd love for everyone to die of old age in their sleep, painlessly and seamlessly, but that seems to rarely happen.

We also have a part to play in how we want to deal with this....help others, take it a day at a time, or not. Sometimes it's hard. OK, a lot of times it is hard, but it is where we are at present.

I think I've probably said all the above before, but I really do think it bears repeating. Discover how strong you are. Discover how giving and forward looking you can be. Do what you can, grumble at what you can't, and see what else good is around the corner. And yes....God or your higher power or Earth Mother, might just have a hand in the good which comes out of it....and so may you.

On the Horizon?

2011-11-14T20:00:00.000-08:00

Today a friend posted on facebook about some research that an Israeli firm is doing on making a cancer vaccine. It is unusual in that it will be used as well for cancer treatment. From the description, it sounds similar to the one described in the Roger Williams Medical trial that I entered my name in for the pool of guinea pigs.

Here's the link: One of the things which causes me concern with this is that usually when you are modifying the person's cells (in this case T-cells) it is REALLY expensive because it is person specific, not the drugs that pharmaceutical companies can mass produce and give to the masses.....yet, I think that this is probably the best route to go for cancer treatment.

What scares me? Well, I'm worried that perhaps it will be the case of those who can afford it will get it and the rest of us will die. I'm also a little concerned at how long it will take for this to be approved in the U.S.

Why? The U.S. is often very slow to approve things. Take, for instance, my dental implants. They were developed in Sweden by Branmark...my dentist who did it told me that they had been doing it for 30 years when I had mine done almost 20 years ago. However, the insurance companies and the other "boards" in the U.S. said that they were "experimental." Therefore, when I needed something to replace the partial plate I had been given when I was 17, the insurance paid a whopping $400, and this was on a $16,000 bill.

I also shiver when I think of what someone I knew in Connecticut went through. She was dying from breast cancer, and there was a trial which looked like it might be promising for her. Usually, such trials are done by lottery to be fair...however we were all aghast when someone who was fairly high in a Breast Cancer Foundation locally told her that SHE could get the friend into the trial, IF she would agree to work on the fundraiser in a specific way.

Sounded fishy at the time.....and it does make me wonder.

I am interested in this platform. Hopefully it will work on many cancers. I am hurt when I think of my friend Stephanie who is suffering from Pancreatic Cancer. Nothing new has come down the pike for pancreatic cancer in many years. Breast cancer has a lot of money and awareness going for it....some of the other cancers are less "sexy" and so they get less attention and less work done on them. Some cancers are rare enough that pharmaceutical companies aren't interested in investing the money and time to develop drugs to treat them as they won't be profitable enough.

I don't think that one disease is any more important than any other....however, I will admit I'd really like them to get some drugs to help me ASAP on the shelf and in my blood stream.

Until then, I'll look on the horizons and just wonder at the beautiful skys that one can see here on the Fly-over state of Ohio.

Trial Treatments

2011-11-11T20:09:00.000-08:00

Life has been full of weirdness lately. Part of the weirdness is my trying to decide if I wanted to apply for a spot in a trial cancer treatment. I admit, that when my oncologist told me that my tumor markers had doubled at the beginning of the month, I was put into a tailspin. He has put me on Tamoxifen because sometimes, when you've been on aromatase inhibitors (like aromasin and arimidex) which have failed, you can fool the cancer into accepting Tamoxifen again and then it dies off. The process, however, takes two months to see if it works or not and it may cause cancer flare ups initially.

Great...just great.. So, when I got notice of a new trial at the Roger Williams Medical Center in Providence, RI where they were looking for stage IV survivors who had "failed" on at least two rounds of chemo and hormone therapies to try using modified T-cells (harvested from the patients blood then returned to them in 2 - 3 months) to see if they could get the T-cells to go after the cancer. Half of the group would get the modified T-cells alone and the other half would receive the T-cells with Interleukin 2.

Well, intellectually, the modified T-cells sounds wonderful and I thought that anything would be preferable to doing more chemo....Only my oncologist said that he wanted to look it over first, and that Interleukin 2 is nasty stuff and it "wasn't a walk in the park." In addition, I would have to arrange to stay in CT and drive to RI for the treatment and tests. I'd be gone for about a month if it went through.

Friends from Connecticut rallied and offered housing and transportation if I needed it, so I put my name in. Only later did I notice that the initial trial only called for 12 people. I did get an initial call to screen me and see if I was eligible. A second telephone interview is supposed to be in the offing.

However, it did make my mouth go dry when I put my name in. What happens in the period between starting the treatment? What if the cancer spreads quickly? Two to three months while they are working on your T-cells seems like a long time when the cancer basically doubles every month. What happens if after they do the treatment, it doesn't work? How bad off would I be by that time? Would other therapies help? Would I be able to take them while waiting?

Scary. I hadn't ever thought about any of these issues. I mainly just thought that you would apply and if you got int, then you'd start immediately.....What a lot of things to consider. Fortunately, my oncologist said that he has other things for me to try....even if the thought of going back on chemo leaves me cold.

Ah....those aches and pains!

2011-10-30T09:34:00.000-07:00

People who have made it through chemotherapy often (usually?) find themselves in the next stage, the "OH MY GOODNESS! Is this a normal ache or pain or is it CANCER!!!!!!!????" I admit, I'm there...especially since my markers doubled last month. My headache...my new ache in my pelvis...is it....or isn't it????

What makes this even more difficult to discern (in addition to my getting older, I mean goodness, I started this journey at 34!), is that while on chemotherapy, the chemo suppresses your immune system. Arthritis is one of your body's immune responses. Basically, when your body sees something inflamed or problematic and it can't get rid of it, it walls it off with calcium (remember those micro-calcifications they look for in mammograms? arthritis, simplified, is your body laying down calcium around joints.

When you are on chemo, your body doesn't feel those aches and pains so much because the chemo doesn't allow it do. Think about it, one of the treatments for rheumatoid arthritis is to use a lesser (meaning not as much as you are given for cancer) amount of methotrexate, a chemo drug. So, it makes sense that we wouldn't feel or notice as much, then whammo! When we're off it, those of us who are of a certain age get lovely aches and pains.

This isn't to say that it is ALL arthritis, or bursitis, or changes in the weather...we ARE at risk for mets, but try to keep calm, think of the other possibilities, and then talk to your oncologist about it. You need to be vigilant, but not paranoid....yeah...that's hard....but necessary. Good luck!

Blogging for Health?

2011-10-28T18:27:00.000-07:00

A while ago, I was asked to fill out a survey for someone who was studying people who blog about cancer...and about health. I dutifully filled it out and said WHY I was blogging...in fact I went into a great deal of detail.

You know the drill..I've said it before. I started blogging about being a Stage IV survivor because I didn't know of any other Stage IV survivors who have been alive as long as I had. In fact, I knew very few stage IV survivors at all. When I was first diagnosed....there weren't any. That should tell you something.

I wanted to give people hope and share some of my experiences in hopes that it might be helpful. I also wanted to put it "out there" so that people who didn't have cancer might be able to understand a little more about the road that the cancer patient travels....all cancer patients have some similarities, even though the particulars and many of the experiences may be different.

In addition, some pretty bizarre stuff happens to me and I tend to understand the physical process and medical procedures. I mean really, who else do you know (other than Vivien's daughter) who have had a suture pop to the surface years after being put in? Or had a biopsy needle broken off her her pelvis????

So, my main goal is to help. Ok..yeah, I know, sometimes I bellyache about what's going on. Hey, I'm human and that's normal. In addition, I know several people who follow this blog who don't have cancer or who just know me. So it's there.

I was completely blown away in his summary of the analysis of the blogs...the only thing he looked at was how it made the blogger feel....in this researcher's opinion all cancer blogs were merely documenting the process that particular patient was going through...and that it was a way of that patient connecting and garnering support. There was no mention made anywhere about anyone doing it to give hope, information and maybe in some way be helpful.

So am I nuts? What do you think? Are you getting anything out of this? Hopefully, it is doing something other than making my fingers slender and maybe helping my neuropathy in my hands. ;)

Shaking your Fist at the Heavens

2011-10-19T17:55:00.000-07:00

Recently, upon hearing some bad news about tumor markers from me, a friend said that I must be shaking my fist at the heavens. Hmm. No. And I can't think of when I' ve ever shaken my fist at the heavens. It wouldn't do any good, and it would have the ability to give me a sore arm. Plus, there are better things to do with your hands.

You can shake your fists at skyward if it makes you feel better. Just don't spend a lot of time and energy doing it...a little bit is OK...too much just makes you bitter.

Fatigue

2011-10-12T17:14:00.000-07:00

These pokeberries are looking a little tired, aren't they? This last weekend, I ran into an old friend of my sister's who did the dance with cancer some time ago. She moaned that she felt tired and couldn't get her stamina back.

This is a common refrain among cancer survivors, and very common for breast cancer survivors. One of my friends from the Noble Circle group had breast cancer in 1998 with recurrences soon thereafter. She still complains of being exhausted and having to take naps.

The sad thing is that just as common as the complaint of extreme fatigue is the reaction of the doctors that "it's all in your head." I'm pleased that the study I took part in two weeks ago is actually trying to study some of the post treatment effects and is listening to survivors and comparing to women who have never had cancer.

Several things come into play here, I think. Now mind you, I'm not a doctor, nor do I have medical training, but I have been observing this for a while and I do know about quite a few of the side effects. I know that currently my problem is that I want things to go back to normal, like yesterday. The reality is that it takes about a full year for all the drugs to leave your system and for things to settle down. In addition to this, while on treatment we tend not to be physically active. In order for our bodies to work well, we need to exercise even if we hate it. Physical activity which raises our heart rate, or even the slow and steady kind like going for an hour's walk daily, helps us in getting good quality of sleep as well as keeping us physically fit and active which drives away the fatigue.

Fatigue can also be associated with depression which commonly hits survivors. It can also be a sign of other problems, such as heart issues which may be a result of your treatment or it might have been an underlying problem which has now been brought to the fore. If you are suffering from fatigue, please go and get evaluated. It might be something which can be taken care of if you look at it from different angles.

Of course, they also say that each course (meaning the full round of treatment) can age your body by 10 years...since I've done three courses (1994, 1998 2010/11) then I guess I've lost 30 years and am now the equivalent of an 80 year old. Hmm. No wonder I feel tired!

If a doctor tells you "it's all in your head." See another doctor if you can. Remember, they used to think that Epstein-Barre syndrome was "all in your head" and now they recognize it and understand that there are several causes for it.

Also...don't forget...sometimes a cigar is a cigar...you just might be tired!

Shining some Light

2011-09-30T21:16:00.000-07:00

When ever I hear about a cancer study which I might qualify for, I always volunteer to participate. Whatever I can do which will help us to understand what it does, shine a light on things and maybe bring it into focus, perhaps making life easier for others I think is important. Sometimes, it isn't convenient.

This week was sort of one of those times. I got an email from one of the Noble Circle coordinators that a researcher from the University of Dayton still needed some volunteers. Mary Fisher is studying how cancer treatments (chemo, surgery, axillary dissection) has impacted cancer survivors. For every cancer patient of a particular age, she has matched them against another participant who does not have cancer.

At first when I was reading the survey I thought, "Oh great...here we have another one who is looking at us as a bunch of parts rather than as a whole." I am happy to say that she isn't. This is looking at the whole gamut from what we report as a psychological problem (depression, fear, nervousness) to sexual issues, as well as the problems we have from neuralgia from the treatment and from lack of range of motion and other issues.

One of the things I had to do is place a bolt through a hole in a perforated plate above my head and thread a nut on the end, working with two bolts and flip-flopping position for five minutes straight. I learned I would never be happy in an assembly light attaching widgets.

It took 45 minutes, and a a half-hour trip one way to the University of Dayton campus. Timing couldn't have been worse...I am up to my eyeballs in deadlines, trying to get ready for my niece's wedding and my husband's cousin from Washington, D.C. was in town and since she was coming in on a red-eye from Seattle she needed to re-coup and re-group at my house prior to her going to an event at the University of Dayton as well. Despite all that, I'm really glad I did it. For one thing, I was one of only 2 left handed responders. :) She also looked at my history and commented "Boy, you really have been through the wringer." Which is sometimes kind of nice to hear.

Maybe sometime, one of these days....something I have said or information I have provided, or my cellular issues will give them the clue which will make a difference. I can only hope.

In the meantime, a little chuckle for you. I have had what I describe as a "halo," longer, strands of hair which stood up from the 1/4" overall head of hair I'm growing. These intrepid strands started go grow back quickly, and in the right light, well...I had a halo. Since I didn't think it was very attractive for a wedding, and my eyebrows were growing back rather unkempt, I went into the hair salon to get things tidied up.

On the way out, an older gentleman who was waiting for his wife looked at me and said "I hope you don't mind this...I am an old Marine, and you have what we call 'high and tight with no loose ends or stragglers.'" I laughed and had an interesting conversation with him about aircraft carriers, propellers and torque. :) Loved it.

Survivor Guilt

2011-09-18T19:18:00.000-07:00

This summer has brought the loss of three women from the Noble Circle group I belong to. The Noble Circle is designed for women to survive and thrive even though they have cancer and begins with a rather intensive weekend retreat followed by 10 weeks of weekly meetings usually lasting around 3 1/2 hours each.

Needless to say, you get to know the "sisters" pretty well. Shortly after we started, we lost Penny who had an unknown primary. Then Robyn who was my chemo partner lost her battle. The next to go in August was Katie. Penny was 35 and had a 16 year old son, Robyn was 53, and Katie was 34 and had three children under the age of 14.

Sometimes you begin to wonder, why am I still alive? Certainly these wonderful women had just as much to liv for if not more than I...If you're not careful, you slide into survivor guilt.

Some of us make it,some of us don't. It doesn't mean that one person had more to live for than another, or that one person was more wicked than the other....it just is. We know so little about what causes cancer, what cures cancer, and about survivorship in general.

My neighbor mused on this when I returned from the last visitation. "Why did you survive and they didn't?" I answered, why did my father survive not one heart attack, but three...at ages 50, 72, and 78 and is now 89 years old? She looked at me and blinked and said "My father died of a heart attack at 48."

I don't know. I do know that I'm here, at least for now, and I'll do what I can. Others who are closer to Penny's son and Katie's kids will be there for them. All I can do is to say a little prayer when I think of them to help them...

If you find yourself having survivor guilt, look at it. If you need to, get counseling to help you. It is normal and to be understood. We have, after all, gone through a tough battle. We are warriors.

The Adventures of Peglegged Petunia, the Pirate Queen

2011-09-09T21:11:00.000-07:00

I can't remember if I have told you that my eyesight seems to be pretty much back to normal....in fact it has been back to normal for a couple of weeks now. I am finding that if I look at something and it is blurry now, it is more likely that I didn't find the "sweet spot" on my progressive bifocals. Yuck. I can't even believe I just admitted to having progressive bifocals.

I am still walking with a strange gait. I have noticed that I have been moving more like my father, but his problem was due to arthritis and a knee problem. One of my friends described it as a rolling gait...which is pretty much how I'd been thinking of it.

The other day, my physical therapist who has been working on my hand for lymphedema commented that I was "gimping around." She was thinking I was in pain, I told her that I was pretty sure that the problem was that the cancer in the acetabulum (pelvis) had caused deterioration and that my right hip was now shorter than my left. She measured it. Sure enough, it was 1/2" shorter than my left. She suggested putting in heel lifts and I purchased something right away, which made a significant difference.

I am still having trouble with severe neuropathy in my feet and lower legs. I don't know how much feeling will return and I'm wondering if some of it may also be a neural response causing sort of a dropped foot response...all of which are side effects of Abraxane. Time will tell.

I did discover that I do have a side effect now from Aromasin...it causes me to have insomnia...I can't fall asleep until usually about 3:00 and I wake up at 8:30...not exactly the healthiest of situations....But I'll figure out some way to get around this....

So...until then, if you see a sleepy eyed person, who is listing down the street at 3 am wearing a bandana on her head and an eye-patch for effect, don't worry. It's just Peglegged Petunia, the pirate queen. Give me a lemonade and I won't make you walk the plank. ;)

Cure: Cancer Resource Guide

2011-09-03T18:39:00.000-07:00

I admit it. I often take the cancer support magazines I see at the oncologists office and once I get them home, I'm really disappointed. They are often full of fluff or stuff which seems pretty obvious to me...but then to be fair, I have more experience going through this tunnel than most people do.

I was very surprised, however, by a freebie, "Cure: Cancer Resource Guide 2011 edition." The subtitles read "combining science & humanity Cancer updates, Reserach & education." It was really worth it. It is provided free to cancer patients and survivors, but I think I would even pay the $4.95 purchase price. Here's the line up from the table of contents:

Part 1: About Cancer:
          What is Cancer?
          Pathology and Staging
          Cancer therapies
Part 2: At Diagnosis
          Medical decisions
          Dealing with Emotions
          Special Issues by Age
Part 3: Before Treatment
           Seeking a second opinion
           Understanding Clinical Trials
            Insurance Issues
Part 4: During Treatment
            Side Effects of Therapy
            Nutrition Facts
            Financial Matters
Part 5 Survivorship
          Finding the New Normal
           Exercise & Recovery
          Long Term & Late Effects
         Genetic Risk

Part 6: For the Caregivers
          A New Role
          Taking Care of Yourself.

I felt that the information was well balanced and not just fluff. While in some cases I wish it had gone into a topic a little more deeply, I don't think it could have easily and handled the other topics. They have a website with information and you can sign up for a free subscription if you are a cancer survivor, are a caregiver, or are a patient. You can sign up on the website. Check it out. I think you'll be happy you did.

Can

2011-08-26T21:15:00.000-07:00

The other day, on my Facebook profile I posted that I wanted to eat potato chips and that wasn't good. A friend of mine, who is also a breast cancer survivor took me to task saying after all I had been through I should eat the potato chips. Not.

It's really easy to fall into a self-indulgent stance where we cave to our slightest whims. I would like to propose that when we are able, that is to say not in chemotherapy because quite frankly when you're getting chemo that's just about all you can handle, we should be self-indulgent in another way. I believe that we need to do all we can to be the healthiest we can. It isn't easy. I know that. However, I do think we should think about what we are putting in our bodies and how we are treating ourselves. What goes in our mouths should be as healthy for us as possible and everything needs to be done in moderation.

In addition, we need to make sure that we get enough sleep and enough exercise to keep our wonderful machinery running as smoothly as possible. The human body is an amazing thing with incredible ability to recover. However, we need to give ourselves the best possible chance. I think that a large part of Lance Armstrong's ability to recover from what seemed to be insurmountable odds was the fact that he was very healthy and had a body which was in pretty much prime condition. I also think that if I had been in better physical shape, that is if I had been getting the activity that I had been prior to 2009, I would have been in a lot better shape as I went through chemotherapy. I recognize that age probably didn't do me any favors (I mean after all, doing chemo at age 50 is a lot different than going through it at age 38).

I have read lots of studies which indicate that exercising and keeping one at or slightly below the recommended weight for your height helps in keeping cancer away. Even if it is not the silver bullet, I can guarantee that your general feeling of well-being would be much better on a day to day basis.

I know...I can hear your groans all the way here. I am not saying it is going to be easy and remember, I am undertaking this regime as well. I would encourage you to try to change one element and when you conquer that one, then take on something else. It may be as simple as going to bed a little earlier so you get a full 8 to 9 hours sleep or it may be giving up that teaspoon of sugar in your favorite hot beverage. Every little bit is a step in the right direction.

If you feel overwhelmed, then cut it down into something which you can do. And, if you're in the middle of chemo then don't really try unless it is doing something which will help you...like taking a nap or going to bed earlier. We need to take care of ourselves and be self-indulgent in a positive way...and do it bit by bit. Remember, just like this stone, you CAN do this. After all....CAN is carved in stone. :) So indulge yourself in a positive way...whether it is taking a 5 minute walk, reading a book for 20 minutes, or just sitting and breathing without thinking of anything.

An Odd Thing about Disolvable Stitches

2011-08-20T19:12:00.000-07:00


Spellbinder daylily with white and purple coneflowers. At right, rose hips from Rosa Pomifera

Two weeks ago, I once again had a surprise as I was getting ready for bed. When I took off my bra, I noticed a red raised area and a blister about 1/4" in diameter on my mastectomy site. I tentatively touched the blister which promptly popped. No blood, just histamine like you'd find on a burn blister. Since I was having pain in my pelvis in a new spot, I quickly made an appointment with my oncologist.

The verdict? It was a disolvable stitch that my body had recognized as foreign and had walled off. Whether it was from my mastectomy which was done in January, 1998; or my lumpectomy done May 1994, we don't know. My doc says it worked to the surface and he could see the little black threads.

No problem...once it popped it drained and went away. I still have the little scab and the threads at the top of the skin...It seems that my body recognizes foreign materials and does what it is supposed to do. Too bad its track record with recognizing cancer cells and destroying them isn't so good.

Can you believe it? After all these years...will wonders never cease.

Coming Back Slowly

2011-08-14T10:35:00.000-07:00

It has now been a month and a half (roughly) since my last chemo treatment. My eyesight is coming back. While I can now read the printed page without a lot of difficulty, my distance vision is still blurry. That's OK, because it is on the mend.

I am greatly annoyed, however, that my energy level is still compromised. While I can do more than I did when I was on chemo, I am still tired out from doing a couple of things in the same day or calling upon my strength. I can't go at my garden like I used to and therefore yu see that milkweed, wild oats, Russian thistle, nut sedge, and other weeds have taken hold. It is only by the grace of God that I am getting any tomatoes off my plants as they are overshadowed by 6 foot tall stands of ragweed and lambsquarters. I need qa flame thrower to try to get the vegetable garden under control.

My hands and feet are still very very numb. My sense of taste is back. My hair is now a fuzzy mostly white with some brown layer on my head...the sad thing is that it doesn't seem to be coming back on my normal hairline and is probably caused by the lack of estrogen.

I'm coming back slowly. I just need to remember that this did not happen in a month's time and therefore, you (if you're on chemo) and I won't be instanteiously back to our pre-chemo states without time and effort to restore our strength and conditioning.

NY Times Article on what to say/do and a question

2011-08-08T19:34:00.000-07:00

Mona Loa Daylily from my garden

I love this daylily...it is sooo in your face and gorgeous...and with a close-up you can't see the weeds in my garden. :)

Recently, a friend from the Noble Circle project forwarded this link to a New York Times article written by Bruce Feiler, entitled "You Look Great and Other Lies."

Feiler is a cancer survivor and I have to agree with a lot of what he says, but I take exception to a couple. He gives information to non-cancer survivors on what to say and what not to say. Heading up his "not to say" list is "What can I do to help?" His objection is that it puts the burden back on the patient and that it is better just to do what needs to be done as you see it. I agree to an extent...but I also find it interesting that often when someone says "What can I do to help" and you tell them (take out the garbage, weed my garden, whatever) sometimes they don't WANT to do that. They have their own idea of what needs to be done (which may not be what the cancer patient really WANTS at that moment) or they may be feeling like "well, why can't their (fill in the blank with the most convenient relative..spouse, etc) do this for you?".

So. with my comment, I don't mind someone asking this question, but if you ask it, be prepared to do what the patient asks without question, comment or hesitation.

His second "no-no" is not to say "My thoughts and prayers are with you." Here's what he says: "In my experience, some people think about you, which is nice. Others pray for you, which is equally comforting. But the majority of people who say they’re sending “thoughts and prayers” are just falling back on a mindless cliché. It’s time to retire this hackneyed expression to the final resting place of platitudes, alongside “I’m stepping down to spend more time with my family,” or “It’s not you, it’s me.”' Hmmmm....a while back...I think when I was diagnosed with stage IV cancer in 1998,. they had just done a study where some cancer patients were openly prayed for with their knowledge, and some were prayed for without their knowledge and some weren't prayed for at all....and guess what...both of the prayer groups had higher recovery rates than the non-prayed for. I can't remember who did the study and I'm not thinking of the appropriate search terms...(but my oh my there's a lot on the web about cancer and prayer). I know that Feiler is saying that don't say it because it is just a comment and that most people don't ever think about it again.....but I do know that some do.

Quite frankly, I don't think I would have done as well as I did in 1998 WITHOUT the many people who really were praying for me...which included a lot of people who had read about me in newspapers, seen me on TV, heard about me through other friends....and it was sort of cool to know that there was a whole bunch of doctors on a Mercy ship praying for me along with several Catholic churches, a synagog, and a whole bunch of protestant churches of all stripes. So...I disagree with Mr. Fieler on this one.

I'm not so sure about the "you look great." Sometimes that's nice to hear...we know how we look. We know that the lastpart of this line is "for someone who has cancer..is on chemo or whatever." I do know that this spring when my husband's cousin said that my black and white fingernails weren't so bad...I KNEW she was lying and I knew that she would have a bird if her fingers looked like mine...in fact, her husband called her on it which make me laugh....but I also know that she's trying to stay positive because as another breast cancer survivor, it scares the dickens out of her to watch me go through this one more time (and I admit, it scares me too!).

However, every single thing that he lists for what you should say or do is absolutely spot on. Of course, I'd also like a casserole every once in a while and if anyone would grab the vacuum cleaner, you certainly wouldn't have me fighting to take it out of your hand.

Now, here's my question for you...I was trying to keep my posts coming every week....Sometimes when I was on chemo, it was just really hard, especially as I try to keep my other blog going. Now that I'm (knock on wood) finished with Chemo it is easier to write...so how often do you think? I don't think I can do every day...but what's a good amount without you being bored? What do you want to know about? What do you think?

Here's to a clean report...I'm going early to my oncologists as I have had some trouble...and yes, my fear factor is right up there....

Life in the Danger Zone

2011-07-29T20:06:00.000-07:00


red Stargazer lillies from my garden. You need smellovision for these!

I have entered what I call the "danger zone." Often, after completing treatment, cancer patients have a tendency to fall into depression. They are no longer actively fighting cancer and they feel vulnerable. I have been through this myself several times (obviously after completing treatment in 1994 and 1998). I have watched others go through this in addition. I have seen men and women all of a sudden showing all the signs of a mid-life crisis even though they may be long past "midlife". Those who are in midlife, often have an even deeper crisis.

I have known several men who were ordinarily solid, stable people suddenly have affairs, buy motorcycles and ride as if the devil himself were behind them. I guess in a way, the devil IS behind them.

Right now, I am watching for these things in my own life...and doing what I can to guard against it. I know that if I start seeing symptoms of depression, I will have to do something about it. Presently, I don't. I am, however, fighting the thought that it has come back, that the one point rise in my tumor markers is significant (probably not) thinking that the mild discomfort I get periodically in my right side is breast cancer that has metastasized to the liver, and when I sneeze hard enough to blow my head off and it makes my ribs hurt briefly, then it is OBVIOUSLY bone mets in my ribs. Balderdash. I have to put on my logical cap and remind myself that this is probably not so, and even it it were, I can't do anything at present about that anyway.

Meanwhile, my feet and ankles are still swollen (A LOT), my vision is still blurry, my hands and feet are terribly numb...and I still have fuzz on my head. Of course, I also have spruce pitch on my head from where the weeping spruce which over hangs my goldfish pond brushed me on my head as I messed with the filter. Blech. Maybe I should stick some thread on it and call it hair. :)

Two thoughts for the week

2011-07-23T20:11:00.000-07:00

El Ritmo Flamenco, art quilt by Lisa Broberg Quintana

Ok...here's thought number one: Remember that chemo often makes you very susceptible to sunburn, even a while after you've quit AND that there are spots on your body normally covered by hair that are now exposed and very likely to be toasted...yes, I was only out for a brief amount of time, about 30 minutes at about 11:00 am in our unshaded back yard...and the back of my head which was covered by a baseball cap now has a funny oval light burn mark on it.

The second thought is more fun: "Life may not be the party we hoped for, but while we're here we should dance."

Rejoice in Being Bald!

2011-07-15T20:12:00.000-07:00

Ok...so I don't have a photo of my bald head currently...and no one is around to shoot me at present...so these glowing globes will have to suffice.

Today, a fellow Noble Circle Sister groaned that she officially didn't like being bald. I'm afraid that I have to disagree. This is my third time being bald, and I'm afraid that I'm being just a little lazy...I don't bother wearing hats, scarves or wigs around the house anymore...and that means when I go outside to talk to my neighbor or pick up mail either. I just don't care.

You see, I'm still me, with or without hair. It doesn't change who I am. It does, however, make things a little nicer in the summer.

For instance, I've never taken as quick of showers as I do now. When I come out of the shower, I throw a towel over my head and I'm done. No hair is ever out of place. How can that be? Easy, I don't have any. I've saved a fortune in hair cuts and hair dresser appointments. The wind or rain cannot muss my hair up. No hat head....put a hat on, and my head is just the same as when I take it off.

In the summer, wigs are hot and bald is cool. Wearing a baseball cap is cool. If I could remember how I used to tie my cotton gauze hanks so they looked good, I might use those....but I just don't care.

I went to a quilting meeting and someone kept on mentioning my eyes. "I can't believe how blue they are! I've never noticed how beautiful your eyes are. Are they more blue?" To which another Breast Cancer surrivor noted "No, you just don't have her hair distracting you...her eyes have always been like that." Lets hear it for my eyes. Oh yeah, and earrings. No one has made as many comments about my cool earrings until you can REALLY see your ears.

Does not having hair made me any less of a woman? I don't think so . And I'm still me. Oh yeah...and just for the record, Nefertiti, once considered one of the most beautiful women in the world was also bald....she didn't have chemo as her hair dresser, she just had her head shaved, but the result was the same. So enjoy this carefree period while you can. And remember, baldness is the least of your problems and your hair will return after chemo...just be prepared...it might just be curly.

A Difficult post to Write

2011-07-13T21:24:00.000-07:00

I have been thinking about how to write this post for a while...and I have decided just to jump in. I hope it won't be too difficult for anyone to read. As a cancer patient, you meet people in treatment who don't survive their illness. You know that going into it. I have received treatment with several people in the past who didn't survive. It is a given that that will happen.

With life comes death. The human condition demands it. The rub is when we as mere humans say "it is not enough." As long as we remember and pass those gems that the deceased gave us to future generations, they will live on on this side...and forever out of sight until we join them as well.

My fellow Rowdy Chemo partner has passed over to the other side. No longer in pain, no longer in fear, forever in Love. Here you see her with her dear husband Jeff. She worried about Jeff...that she would be leaving him, Robyn was vital and a real spitfire. She called herself the "Breast Cancer Diva" and others called her Diva as well...I don't think she was REALLY a Diva in the negative sense...she got things done, but she really cared about others.

Robyn loved to ballroom dance. She loved her kitties most of which were rescues from really horrible fates. She also just loved to have fun. Here you see her in her Mercedes convertable which has a license plate of "OUIEEE." ("Whee!" get it??). Robyn and I were roomies at the Noble Circle retreat merely by co-incidence....but we often scheduled treatment together.

Just 54, Robyn had been fighting breast cancer for a while. I think she originally was diagnosed in 2008 and it came back either in 2009 or 2010 with a vengeance. When I met her, spots on her liver were getting better, but she recently had it attack her brain and her spine.

Two weeks ago, I had treatment with her and was concerned that she was having difficulty getting up on her own. She maintained that it was muscle weakness caused by coming off Decadron too quickly. Friday, I sent her some texts to which she replied, even though unbeknownst to me she was in the emergency room. I am glad that the last text I sent her said "You are very loved."

As I have said, with getting treatment, you will come to know people who don't win the battle against cancer. On the other hand, just before Robyn died, the father of one of my husband's family died suddenly of an aneurysm. You just don't know and we puny humans have very little control over this.

We do have control, however, over how we live our lives and what we can do to memorialize our friends and loved ones. The following is a tribute to Lynn Goodwin Borgman and was posted by her mother, Elizabeth Goodwin on the quiltart message list. Elizabeth and I started corresponding and although I asked her permission to post this, I think it got lost in the shuffle. I am hoping she won't mind, but as it was already posted in a public arena and as I think it is a wonderful tribute to both mother and daughter as well as a good blueprint on how to live our lives, I'm re-posting it here. I also want to point out something that Elizabeth shared with me that doesn't appear in her son's eulogy....Lynn suffered from fibro-myalgia and even though in pain managed to dance around and frolic in her quilting studio.

Lisa

"In the mid-1990's my daughter and I began meeting at QSDS (Quilt Surface Design Symposium) ---she came from Cincinnati and I came from Pittsburgh. Lynn was already knee deep into fabric design yet she had also purchased an amazing amount of fabric. To be honest, before our first venture I had envisioned the classes would be nothing more than a way for us to reconnect and share a common experience. How naive I was-----the classes and the new friends opened up avenues of creativity and a shared adventure with others.

After Lynn died suddenly in 1999 I felt I had to keep involved in the quilting world immediately or else I would never venture forward into things we had shared. My first step was to attend Quilt National '99. Believe me when I tell you this, I had no sooner entered the door than I heard Lynn say "Mother,

don't you get it?" I sought out Hilary Fletcher and asked her if she would like another award and she gratefully accepted. That fall I went alone to Houston and reintroduced myself to Jane Dunnewold who knew Lynn's interest in surface design. Jane helped me set the criteria for the award to be

given to the artist who had altered the fabric through the use of various surface design techniques.

The winners have been: Jan Myers-Newberry '01, Clare Plug '03, Sandra Woock '05, Barb Wills '07, Sue Cavanaugh '09 and '11. My hope was that the winner would gain attention and new admirers thus furthering their career, and this has happened in several cases, most noticeably for New Zealander

Clare Plug and Ohioian Sue Cavanaugh.

As for myself I have thoroughly enjoyed many classes at Nancy Crow's Barn and will be attending Jan's fall class. BTW, Lynn's fabric reside in my house. Lynn's son wrote her eulogy and I think you will enjoy reading it:

She pieced together quit of love

Dylan Borgman
Lynn Borgman
Lynn Goodwin Borgman — entrepreneur, quilter, mother, and oft-times the real-life inspiration for husband Jim Borgman's cartoons in The Enquirer — died Feb. 3 (1999) at age 44 of an apparent pulmonary embolism. Today, we share a eulogy, edited-for-newspaper format, written by Lynn and Jim's 16-year-old son, Dylan.
My mother loved fabric.
I never really knew why that was until I saw her in her studio one day, completely engulfed in her work. She was singing and dancing and sewing all at the same time.
I knew then she loved her fabric, because fabric was part of her soul.
For everyone there is such a medium. It may be a food, an art, a song or a place, but it is the physical manifestation of the soul. I don't think many people recognize their soul medium, but she knew — and she surrounded herself with it, which is what made her special.
If you looked in her studio you'd see colors and patterns covering walls up to the ceiling. In a way, her fabric was not unlike herself. Every single part of her was bright, expressive, inviting.
Each piece of fabric she owned cried out for its own special treatment, and most of the time, it was all I could do to stand there and take it all in.
She used to say that she never quite knew what she was going to do with all her fabric, but she knew it was going to be used for something. I know now what that something is.
I always smiled when she'd say she was a quilter, because she was more of an experimenter. Quilting was too slow. Her mind was so full she rarely had time to finish a quilt before going on to something else.
Of course, she and I knew that if she had 10 lives, she could never use up all of her fabric.
But now, I can see that even when she was not sewing or buying fabric, she was hard at work making a bigger quilt. I can see her final masterpiece in its entirety. She made every one of us into a piece of her quilt.
When you look at her fabric, you see its texture, its color, its individual beauty. Some pieces are large, some small, some are geometric and some are irregular. Every one is a part of her mind and body.
My piece reminds me of her brightness, her beauty and her grace. I will hang it above my bed and it will protect me in my darkest hours. If we are ever sad, we can look at a piece and remember we have a gateway into her soul.
As we go back to our lives, one might think her final quilt has been shattered. There is nothing farther from the truth. By talking about her, sharing stories and grief, we sew each piece of fabric together.
So the quilt will not be destroyed but unfolded, revealing its beauty. It will reach from as far west as California to as far east as New Jersey, from as far north as Alaska to as far south as Florida, it will continue to stretch to Europe and Africa.
Anywhere we go, we cover more of the world with her love.
Each piece of her quilt is beautiful in its own way, but only when it is seen from above, will the true beauty be seen. I hope that wherever she is now, she can look down and finally know what her quest in life was.
Her quilt will be with us always. With what she has given us in her short-lived existence on this earth, we can warm the world when it is cold.
Dylan Borgman, 16, lives in Hartwell and is a sophomore at Walnut Hills High School. Pieces of his mother's quilt fabric were distributed at her memorial service."

The above was originally posted on the Quiltart message list by Elizabeth Goodwin

It's been an Odd week

2011-07-03T19:49:00.000-07:00

Sometimes you end up having really interesting experiences when you least expect them. I've been having tenderness in my toes. Well, to be more precise, I have a sore big toe which feels like I have an ingrown toenail brewing. You see, I can't see my toenails well enough and I can't manipulate the toe-aiil clippers to trim them properly. And then in the evenings when I go to bed, I feel my big sore toe. I know...too much information. But anyway...So, I went to the doctor. After a mix-up (the front desk forgot to tell the doc and nursing staff that I was waiting), I went in and I thought I was going to have a quick time of it.

Not so. After he had examined me. He looked at me and asked if I minded him asking me about cancer. I said sure. "How long does it take to come to terms with a diagnosis?" Hmmm.

That's a tough one. I think it is pretty much on an individual basis, but there is, I think, a progression. At least it was for me adn for most other people I've talked to or heard talk about it. First there is a numbness, then a feeling of despair as you think you're going to die.. imminently.Then, some people get angry, some people go into a period of denial, and me? Well, I felt like I had a job to do and I went into warrior mode. For most people the word "cancer" strikes fear because it is usually seen as a horrible death (and often it isn't) as well as being an absolute death sentence (it isn't...being born in a death sentence. Lots of people survive cancer but everyone will die some day).

What was so interesting is that he looked at me and said, "You thought you came in here about your toe...you really came today to help me. I've just been diagnosed with salivary gland cancer." Wow. I wasn't expecting that one. But I feel for him. He's a doctor. Doctor's heal people and so for him, there's another element that he has to wrap his head around.

Friday was my last chemotherapy treatment. I will still go in to get my port flushed and every three months I will get an IV of Zometa to help with my bones and ward off further bone mets. I will miss seeing my friends, the people I have been getting treatment with for the last 9 months. You really meet some of the most interesting and inspiring people in the treatment room.

I can honestly say that most people are very positive and nice. I did meet a very negative person on Friday, which was interesting.

Hopefully my eyesight will return...as well as the feeling in my fingers and feet, although I'm not so sure about that. I will certainly NOT miss having a dry mouth from the drugs. The sensation of waking up in the middle of the night with your tongue completely dry is not something I enjoy.

The End is in Sight

2011-06-28T12:14:00.000-07:00

The end of chemo that is. I am scheduled to get my last treatment on Friday. My first treatment was Nov. 8, 2010. Well, the first treatment for this go around. It is funny, some people put the dates out of their heads. I reamember all of them exactly, the surgeries and the chemo commencements. :) I can't tell you the end dates on most of them though, just the beginnings.

I will continue getting IV drips of Zometa every three months. That's OK. I'll also have to go in monthly and get my port flushed. My veins are pretty well gone after all this.

Some people are often afraid to stop chemo. I'm ready. I know that it can come back after stopping, in fact I've had several friends have to handle that. The good thing is that there are more treatment availble for people who have had breast cancer and failed on other chemo treatments. I am constantly amazed at how much more is out there than there was 14 years. ago.

I'm also amazed at how the anti-nausea drugs have chnged. CAF (Cytoxin/Adriamycin/Flourilacil or 5Fu) was hard for me. The woman I sat next to two months ago was amazed that I had had a hard time with it in 1994....they have changed the nausea drugs and how they administer it so it is much easier now.

I'm looking forward to having my eyesight come back, then my sense of taste, and NOT having my tongue dry out at night. I'm also looking forward to hopefully getting feeling back in my hands and feet. It has been a bummer not being able to drive where I want when I want and not being able to read much.

I am less happy that the progress of developing new drugs is based often politics and money. Drug companies don't put the effort into getting drugs certified if they are not going to make a lot of money on it. People who have rare cancers often have to wait until someone either does an end run (not very common, but it has been done) or it becomes expedient. Not what I like to think about. I don't know what the answer to this problem is....I just want this scourge to stop...whether it is breast, pancreatic, ovarian, lung or whatever cancer.

Secrets to a Long Life from Walter Breuning

2011-06-16T19:03:00.000-07:00

Not too long ago, Walter Breuning of Great Falls, Montana passed away. He was 114 years old. Last October, he was interviewed by an un-named AP reporter and left his keys to a long life. They are as follows:

1. Eat two meals a day. "That's all you need."

2. Work as long as you can. "That money's going to come in handy."

3. Hlep others. "The more you do for others, the better shape you're in.

4. Accept death. "We're going to die. Some people are scared of dying. Never be afraid to die,. ecuase you're born to die.

I don't think that Walter meant to roll over and give up fighting, nor that we shouldn't try to live a long life, just that death is a part of living and we shouldn't fear it. Frankly, I have a lot I want to do before I die. But that's a lesson too...we should try to do as much as we can while we can. Time's a wasting folks and time is something you can't get back.

Tomorrow I go in for the beginning of my last series of chemo. I'm hoping that I am able to make it through the next three sessions OK. This last one was really hard. Evidently that decadron buzz I used to get is a thing of the past...we'll see. I've been really tired and my eyesight continues to degrade. That supposedly will come back after quitting the chemo. What do I miss most? Not my hair (I did laugh when I was in the doctor's office last week and a woman said to me "that's alright dear, it will grow back." I don't know what gave her the idea that the hair loss bothered me...especially since I was sitting there in my pink Old Navy baseball cap.

I'd rather my breast grew back if we were talking about growing things back. I do hope, however, that some of the numbness in my hands and feet goes away. The inability to get information from my feet means that I'm unsteady. I fell in the garden a couple of times this week and whacked off the cover on the electrical to the fishpond. I'm just grateful I didn't fall IN the fish pond.

Hopefully, the muscle/nerve/bone pain I have will also get better. One can always hope! And I do!

Blurry Vision

2011-06-10T18:41:00.000-07:00

It's been an odd week. I have found that the further along in chemo I get, the harder it gets. OK, so you don't need an rocket scientist to figure that one out. However, I had sort of scheduled my days depending on the "buzz" I get from the decadron in order to help me get things done. The sleeplessness and extra energy helped counteract the days of lethargy.

However, last weeks treatment never gave me the buzz. That's OK, because I really didn't like it, but still, it was nice to be able to catch up on things. One of my Noble Circle Sister's who has been fighting a particularly nasty form of breast cancer longer than I have (well, she's been on chemo longer than I have) told me that after some time, the decadron didn't give her the energy either. Today is the first day in a week which I have actually been able to stay up during the day and haven't gone to bed by 8:30 p.m. This is my week off, so hopefully, I'll be able to get myself back in order before starting the next cycle next week.

I was beginning to get concerned. You see, I went to my oncologist on Tuesday and was dumbfounded to have him say that I could stop. While my markers have been falling, I was thinking that he would want them to be below 30. I looked at him and told him so as well as telling him I'd prefer that they be 0 (not realistic) but would like them to be around 18 which isn't really a magic number, but the point at which I stopped when I was on Taxol in 1998.

Granted...my eyesight continues to get worse, my hands and feet are VERY numb (I can't feel my feet at all when I'm barefoot on a carpet). I have rashes on my arms, like gloves...in addition to the other side effects of Abraxane.

I asked him what he thought about having me go one more round, a series of three weekly IVs. He said that he often has patients ask him to continue for six more months. I told him that wasn't realistic, but what about one more course, only because I wanted the markers to be a little lower so that my body could clean up the rest. He told me that he was fine with that, that there was no right or wrong answer, but that he had watched me for years in the 40s (well, only a couple of years I think) and that he felt that my body was beginning to cry uncle.

True. It is. At least with the fatigue I've had. While I find it important to be able to participate in my treatment, sometimes I think that calling the shots is a bit scary. I was wondering yesterday if I would be able to go for three more rounds. Of course, preparing for my daughter's graduation and the party did take a lot out of me.

Still...I could be done. However, I think I am making the right choice. One more, then I'll be done. Hopefully, the pain in my hip will go away and I'll figure out some way to be able to be mobile and do the things I like doing. One woman said that Abraxane was a horrible drug and that it ages you 20 years. Frankly, I'd prefer to be aged 20 years rather than dead. I am going to have to figure this one out and work hard at regaining my health. Ah, the challenges of cancer survivors! Figuring out the future can be a very foggy picture indeed!

Freaking out

2011-05-31T19:22:00.000-07:00

Life has been hectic.Saturday was my daughter's high school graduation and party. We had people coming from Washington state, Montana, Connecticut, Michigan and of course, the local area.


Iris from my garden

Trying to get the house and gardens ready was a real feat. I had help from lots of people but found that the fatigue and pain in the pelvis I had was really a bit much to try to accomplish this. Each night when I went to bed or often even before, I had horrific pain in my pelvis. Since I didn't have similar pain when I had the first bone mets in 1997, I was terrified that I had chemo resistant cancer.

The good news came today, howver, that my markers dropped again. So, the pain, which is rather nasty, is due to a re-fracture from the damaged area, pain associated with Abraxane, or pain from the 2009 fracture from all the lifting, pounding, digging, etc. I've been doing.

I was really frightened. How was I going to be able to continue to live in a 2 story house? Does this mean that the rest of my life, however long that may be, I would continue to have pain?
Sometimes the Tramadol worked, sometimes it didn't.

In the meantime, I am going to hire someone to help me spread mulch, the only way I'll be able to keep on top of my garden this summer. One of my neighbors told me that I would have to cut back. I've been thinking that and I've been giving away plants, but there is a limit to some of the areas that I am willing to cut out. I don't want to loose a lot of the shrubs I have and while I can, and am, reducing the size of some of the beds, others I don't want to. Mulching and using Preen, a synthetic corn gluten which inhibits seeds from sprouting helps. The areas in my garden where I used it last year and mulched were far easier to get into shape this spring.

And...of course, I hope I don't have to do this next year. In the meantime, I'm going to concentrate on the falling markers...........

The Moon Face

2011-05-11T20:22:00.000-07:00

Two weeks ago, I had a revelation....No matter what you KNOW about side effects...sometimes you're slapped up-beside the head with them.

Since starting chemotherapy in November, I have lost 10 pounds. This photo was taken of me right after having my first treatment. I got the chemo on Friday and this was taken on Saturday morning.

This photo was taken April 30....now mind you, I've lost 10 pounds. What you're seeing is the result of Decadron, the steroid I get to alleviate some of the side effects of chemo.

Yuck. Maybe if I stuck a pin in myself???? Oh...wait...they stick needles in me weekly. :)

Anger

2011-05-07T19:23:00.000-07:00

A couple of weeks ago at the Noble Circle project, we were talking about anger and the diagnosis of breast cancer. It was interesting, several of the participants had reacted to the original (and in my case repeated) diagnosis of cancer without anger. Instead, we saw it as having a job to do and we needed to get to work.

I can say that I have been angry during my treatment several times. I was angry with Dr. Bernie Siegal when I read Love, Medicine and Miracles. In it, he commented that those who got angry with their disease were ones who tended to survive longer. I had a hard time with this as I wasn't angry. I felt that I was sideswiped by evil, but that there wasn't anything I could do about what was in the past, I just had something I needed to work on at that moment. I felt that by saying that those who got angry survived , by the opposite, those who didn't died. I had to take a deep breath with this one.

Bernie was one of my friend's neighbors and I told her to tell him the next time he was jogging by to say I was angry, but that I was angry at him for having written such a thing.

Anger is a funny thing. In general, it is considered a negative....and "bad." However, I think that that is a disservice to human-kind. Anger is a normal, human feeling and to label it as bad is denying ourselves our humanity. However, it is what we do with our anger which is the trick. If we direct it towards others in a raw, destructive manner, yes it is bad. If we stuff it and allow it to eat at us rather than looking at the causes of our anger and trying to face it and find a solution and an appropriate outlet or diffusion, than that isn't good either.

Anger can be a motivating factor and if approached rationally it can open dialogue and clear the air. However, I think far too often we don't approach it in the right way and we lash out...

I have to admit, I have been angry with my family's inability to help me or acknowledge that I have cancer and am unable to do what I normally do because their own fear. In the past with my husband, I directed this anger inward by eating too much or stuff I shouldn't have....self-destruction is always a bad idea! But, I do think that if we step away and cool down, analyze it then talk rationally with the source of our anger, if we can, we can go far to finding solutions.

This isn't to say that I feel bad that my daughter doesn't remember a healthy mom. I do sometimes envy those who are living "normal" lives and haven't had to repeatedly face the financial and other burdens that having had cancer causes. But then, I look at the many beautiful children who have not been able to live as long as I have and all the young soldiers who have lost their lives or who are suffering from PTSD, or loss of limb and functionality whether it be mental or whatever and I feel fortunate that I am where I am.

Polyanna? Perhaps. I've always been that way...but I don't think we need anything else to beat ourselves up over....I do think that we need to work hard on trying to have the mental and physical stamina we need to live our lives as best we can...and that includes accepting that we are human and we get mad...at our disease, our doctors and the many injustices in the world.. So..lets go out and see what we can do to rectify some of these things...correct what we can and let go of what we can't. Seems to me that that's a pretty good way to live our lives however long or short that might be.

The photos is a honey locust tree (Gleditsia triacanthos) growing at Mt. St. Johns, the Marianist Environmental Education Center in Dayton, Ohio. The thorns were sometimes used as nails. The "honey" comes from the sweet pulp that is in the seed pods. The Native Americans used to use it as a food source.

Trying to do it All and the problems with asking for help

2011-04-24T09:08:00.000-07:00

My daughter's high school graduation will be upon us in a month. I am trying to get the house and the garden ready and it is very, very difficult. I have found that with each treatment it is getting harder. I'm getting more tired. My eyesight is causing real problems.

My daughter wants to have her party outside in the garden. In addition, friends and family from out of state as well as people we haven't had over before will be coming. Needless to say, I do want everything to look nice and be good.

I think back to when I was in treatment 14 years ago. I was in treatment with a woman named Hyla. Hyla's daughter was going to be Bat Mitzvahed while she was in treatment. Rather than have the reception at a hall, her daughter wanted to have it at home...in the garden. I remember feeling sorry for Hyla and thinking that her daughter was asking too much. It was going to be a lot of work to get things around.

I now understand where both Hyla and her daughter were. I think for my daughter and probably Hyla's as well, they were trying to keep things as normal as possible. In the past while I would go into overdrive, doing this would be very possible and things would be great. This is their way of trying to make themselves think that everything is fine, nothing is different and that mom will be OK.

Only, it is different. I don't have the stamina, strength, or ability. For me, I am tired of my daughter having to live with cancer hanging over her for all her life. I want her to have a really good graduation party in the manner in which she envisioned it. I want the same for me. Reality, however, is another thing and I find that I am doing the ever lessening expectations. Things I wanted to have done simply aren't going to happen.

Now, I'm hoping that it will dry out enough so that I can get mulch delivered and the deck painted (a necessity as ti really looks bad).

Dear husband and dear daughter both are in deep denial about what I am able to do, although I think it sort of shook them up today that I didn't go to church with them. Dear husband seems to be in lala land and really doesn't understand.

I am embarassed to ask my friends for help because some of it is sooo bad and I've been so lax in taking care of things (yes, the basement is a disaster area and needs to be sorted out). I need to make decisions about stuff and a lot of the putting away needs to be supervised by me. I'm going to have to just stuff it....I'm happy that a friend of mine is coming this next weekend to help. It doesn't mean, however, that I'm any less embarassed about it. I feel that my husband, daughter and I should be able to do it. However, I think that their inability to acknowledge that I'm in trouble is a major problem in this. I admit, I'm also a bit bummed that I thought I'd be done with chemo by now..instead, I'm on it for at least a couple of more months...sigh.

Understanding where people are coming from is often the first step in being able to work on the problem.

On a brighter note, isn't that tulip just great?

In the Moment

2011-04-15T20:04:00.000-07:00

Not too long ago, at the Noble Circle Retreat, a young woman who was listening to us tell our stories broke out "does it always come back?" At 33, she was understandably worried. In fact, that was one of her fears. She also wanted to know if you ever got over being afraid that it would come back.

I jumped in. Not surprising, I knew where she was coming from. I had been there in almost exactly the same circumstances, a young daughter, being young and facing early one's mortality. It was, however, a slightly different group of people. Most of us have been in or were in dire straights...more so than the average cancer survivor.

That isn't to say, however, that her fears were unfounded. I do know what she's saying. I can also honestly say that over time you think of it less. It is there, but it just doesn't raise it's head as often. Yes, every time you go in for a check up or a test, there is that moment. My husband's cousin goes into a tail spin every time. I don't, I think largely because I don't think it is worth worrying about. If tests do show that it is back, I can't do much about it and fussing about it is counter productive. We all, however, approach things in different ways. This is just my viewpoint.

I do think however that using a technique used in yoga and meditation is worthwhile. When the thought or fear of cancer flits through your mind, acknowledge it and let it go. Be in the moment. Not what happened before and not what MIGHT happen in the future. Just breathe and be in the here and now.

Sometimes when I think of things, it amuses me. Last weekend I had the privilege to work in the Mistyfuse booth at the International Quilt Festival in Cincinnati. I was going to buy some UltraViolet Mistyfuse, but Iris (Ms.Mistyfuse) was out of the packages. She said she'd send some to me. How much did I want? Oh, 10 yards would be fine....she said that it comes in 50 yard bolts. The thought which flitted through my mind is "50 yards? I don't think I'll live long enough!" I giggled when I realized what I had thought. Iris looked at me and said "What?" "Oh, you would be mad at me if I told you." She looked at me sternly and said "I'm sending you 300 yards, then." Iris knew what I thought....and I think it's pretty funny.

Remember...breathe in, breathe out...and just enjoy the now.

Medicinal Qi Gong Lift Qi Up, Pour Qi down method

2011-04-05T19:12:00.000-07:00

Vivien asked me about the Qi Gong which we did at the Noble Circle Project. Qi Gong is an ancient Chinese tradition which used for curative powers as well as prevention. It is based on the breathing and motion I think called Prana. Go to the Wikipedia entry for it here...it explains it better than I ever could.

The one we learned at Noble Circle is a form called "Lift Qi Up, Pour Qi down." I found a video on you-tube which shows it better than I could ever do it! Notice, what he does in 3 minutes (approximately) takes me 20 minutes to do...and I'm very clunky at it...one of these days I'll get as fluid in motion as he does.

I'm sorry to say that the embed codes are being stinky...so here's the link.

Trust me..me doing it would send you into hysterics.

Lymphedema

2011-04-04T16:45:00.000-07:00

I'm really disgruntled today. Last week Thursday, at the Noble Circle meeting, I looked at my hand in horror. My left hand, the one which had the axillary dissection and radiation 17 years ago, was swollen. After all this time, I now had lymphedema. SNARL.

Lymphedema is a condition which breast cancer patients who have had axillary dissections and others who have had either injuries, surgeries or other complications which disrupt the lymphatic system are prone to. The lymphatic fluids are not able to disperse in a normal way because of the damage done to their passage ways. Instead, these lymphatic fluids pool. The affected area swells and without treatment can become large, painful, hot and hard.

In order to prevent lymphedema, you need to make sure that you don't have blood pressure taken on the affected side, nor anything which can pierce the skin. Carrying heavy loads can bring it on, or an infection can trigger it (which is what happened to me...the side effect of the chemotherapy led to some problems with my fingers which led to an infection under the nails...and I went off the antibiotic because it (along with the chemo) was upsetting my GI tract. My sister got it when walking her dog about three years post surgery. Her golden retriever pulled sharply and from then on, she's had a light case of lymphedema.

Lymphedema can be controlled with therapy and wearing compression gloves/sleeves. Severe cases call for pumps and other therapies. However, the problem is that among many doctor's there's just not a whole lot of interest or understanding. In addition, many therapists who have gone through training don't bother to become certified or list their affiliations.

My sister cautioned me that some therapists could merely have taken one class and that I needed to find someone who really knew and understand the issues of a lymphedema patient. A couple of years ago, I met a woman when I went to get a P.E.T. scan. She had a horrible case of lymphedema. Her arm was grotesquely swollen, hot, hard and painful. The only thing it was lacking is the discoloration which often comes with advanced cases.

I had mentioned the lymphedema to my oncology nurse on March 25th. She seemed unconcerned and when I asked her what should be done, she said "Well, I suppose we could send you to lymphedema school." Not good enough.

So, I made an appointment with my general practitioner's office and went in on Monday. My GP wasn't in, so I saw another person from the practice. He proceeded to tell me that my fingers, for which I had gone in before, were a side effect of the chemo. I said, "Yes, it is. But the infection is only related to the chemo because of my supressed immunity. The de-lamination (for lack of a better word) of my fingernail from the nail bed allowed for moisture to get in and it to get infected. The infection has now caused this problem." He said that usually, the therapists who do lymphedema work are occupational therapists. I asked if he would check the National Lymphedema Network to see who is locally certified. The closest person was in Lima, Ohio, an hour's drive north of my home.

I wasn't thrilled. I'm tired and the concept of having to go an hour each way just wasn't my idea of a fun time. I called and the therapist nicely emailed me with a list of other people who had gone through training at her school and specialized in lymphedema. The closest one wasn't practicing anymore. The others, save one, were 47 miles away and didn't seem to have the credentials that this woman had.

So I went. She was pleased that it wasn't severe and it was restricted to my hand rather than all the way up my arm. She fitted me with a compression glove and taught me how to massage the lymphatic fluids away. She told me that I didn't need to see her again unless I had questions or needed more treatment and to keep an eye on it. I also have her email address so I can reach her that was as well if I have any problems.

Today, a week after I visited the woman in Lima, I got a call from a facility a half an hour away. It seems that the oncology nurse had made a note of it and someone had finally read it and made a referral. I know, however, that waiting isn't a good thing and I'm still glad I took the drive. It shouldn't be so hard to get treatment for something which is a common problem. It shouldn't be that we have to struggle to get what we deserve. I am also grateful that my doctors in Connecticut and the American Cancer Society in Connecticut had warned me about this so I knew what to do and how to proceed. I'm grateful for my sister to have given me some other links.

I'm angry that if I didn't know what to do, I might not have proceeded and perhaps would be in worse shape. I'm angry that my fellow breast cancer survivors have to be so proactive and know so much more on our own. Somehow, it just doesn't seem right.

Do check it out. Learn the warning signs. Keep vigilant. It can creep out and get you any time.

Giving Back: The Noble Circle

2011-03-25T22:07:00.000-07:00


Sycammore tree at Hope Spring's Retreat center,

In the last post, I suggested that a way to continue to fight cancer (and also to perhaps help avoid or dissipate depression) is to do something active, to get involved or help others after you have completed treatment.

In 2002, Anne Burns opened the Noble Circle retreat at the Heartwood Retreat in California. Shortly later, 8 Dayton, Ohio area women joined together and brought the Noble Circle Projects here. Their focus was to bring complementary healing techniques, particularly nutrition (or gentle eating) and exercise (using the Chinese healing art of Qi Gong (pronounced "chee gong"), as well as other techniques. Many of the original women had practiced these elements in their own lives and they found them useful.

I had heard about the Noble Circle project Dayton from my husband's cousin Maggie who did Qi Gong with one of the founders, Jan Lively. In addition, every year the Dayton Daily News ran articles about it right around the time they have their fundraiser called "The Aware Affair." I didn't really know the details. I didn't really understand how it worked. I also had no clue that there was a waiting list to get in on their retreats.

When I found that I had a cancer recurrence last year, I sent emails and asked about the retreats. I admit, I was in a panic. I told them about myself and found out that I couldn't get in, but that I would be put on the list. Each retreat they accept 15 women....in the Fall, I didn't get in either.

This spring, I got word that they had had a cancellation and that I was "in." I admit, I'm very strong on the nutrition part and try to practice that with the family (I admit, I have a sweet tooth and sometimes succomb to that), I was frantic to start Qi Gong. I had participated in a couple of classes of walking Qi Gong in Connecticut, but no one really offered classes on a regular basis or in a location/time which was good for me. In addition, my high school friend Janean Crapo runs a dojo in Battle Creek, Michigan and teaches Qi Gong and she's been after me for years to start practicing.

Still, you don't know what to expect. I must say, it was an absolute pleasure. While there, we were treated to wonderful vegetarian or almost vegetarian foods, Reiki, reflexology, and massage. The three days were PACKED with information, activities, and Qi Gong. I think they managed to put what normal people would do in a week into three days.

One thing which was very neat is that we were all women who were facing cancer....many of us were Stage IV, some of us were currently in treatment, others were completing treatment, some were out for a while. We have breast cancer, ovarian, pancreatic, melanoma, cervical, and neuro-endocrine cancers represented from either the participants, the past-participant volunteers and some of the practicioners who volunteered their time. Having more than just breast cancer was a good thing, although I have to admit, more of us had breast cancer than any of the other types.

We will continue meeting on a weekly basis for 10 weeks, then once a month thereafter. These are all remarkable women and I am honored and blessed to have been with them. As Robyn (aka Breast Cancer Diva) said, there's a reason we were all put together at this particular retreat. I think she's right.

Now, if only I can get the Qi Gong down...and integrated into my life....only a half an hour...but so far I've been interrupted by hail storms, children, and other things...maybe just forming my intent and visualizing it will work. .... :) It is my hope that the Noble Circle Project will spread even further an you all will have opportunities to participate either as volunteers, practitioners, or as one of the participants in the program.

Help

2011-03-18T08:03:00.000-07:00

On Tuesday, when I went to my oncologist, I overheard the lady across from me bemoaning that she couldn't work in her garden. She got out of breath and had to stop. "I'm so out of shape!" she moaned. I had to butt in (no surprise there) and explain that no, she wasn't necessarily out of shape, but that since her red blood cell count, hematocrit and hemoglobin were probably down, her body just wasn't getting as much oxygen as normal. She was on the same number of treatments I am and I feel like I should be on oxygen with all the huffing and puffing I do when I have to go up and down stairs more than once. Bending over and cutting down grasses in the garden is very hard.

She was an avid gardener, as am I. I have to really put it in gear as my daughter's graduation party is supposed to be in my garden at the end of May and I have house things to do as well...but that's not the point.

I've written in the past about the wonderful programs that are available to help cancer patients. One of them is a house cleaning service called "Cleaning for a Reason." Professional maid services donate one house cleaning per month for four months. A limited number of people are accepted and quite frankly, they need more cleaning services to become involved. The American Cancer Society's Look Good Feel Better program is another wonderful service.

As I have mentioned before, people who live in rural areas or ones farther away from a large city often do not have anyone participating near them. They lose out. Even with me, I live in a town of about 25,000 people, only 26 miles from Dayton which has a population of 141,000. Only areas south of Dayton have this available to them and they don't travel as far as Troy.

This brings me to another point...quite often (more often than not) people who have finished treatment suffer from depression, sometimes slight, sometimes more severe. They are no longer fighting cancer so they feel like they are sitting ducks.

I would suggest this. No matter how small your town is, see if you can't enlist people to help cancer patients. Contact the American Cancer Society and find out what is necessarily to get your local cosmetologist to participate in the "Look Good, Feel Better" program. If there are cleaning services nearby, suggest that they participate in Cleaning for a Reason. They may not know about it and be more than happy to participate.

Sometimes, helping out and fighting cancer in other ways may make you feel better too. I plan on contact local garden clubs and also volunteer to help people who have cancer and are concerned about their gardens.

New Breast Cancer Study for African American Women: Please Share!

2011-03-03T17:15:00.001-08:00

I just got a notice from the Army of Women. A couple of studies for African American Women studying breast cancer is not filling well. Please spread the word and work to fill the study so that we can learn more about their experiences.

http://www.pitchengine.com/pitch/129250/

Birthday Gifts????

2011-02-25T20:49:00.000-08:00

Last week I got a "Birthday coupon for our Valued Customer" from my favorite salon here in town. Oh...wait...I can't use the $15 off on a hair cut because I have no hair. Manicure? That's out because something strange is happening to my fingers and even the oncology nurses haven't seen anything like this so I went to my regular doc to have him take a look and some cultures.

Facial? I'm loathe to do that because my skin is ultra sensitive and very dry.

Bummer. I guess I'll just have to see who I can give the coupon to or even if it is transferable.

Bad Hair Days when the Hair isn't Even Yours

2011-02-16T16:28:00.000-08:00

I meant to share this picture on Valentine's Day. However, I was just too tired to post. :( Aren't they cute? Just another example of the wonderful people you meet in the treatment room.

Yesterday when I came home, my darling daughter said "MOM! WHAT did you do to your hair?" Huh? "You've done something really strange to your part!" Hmm...I grabbed it and adjusted it until she agreed that it was OK. What a bear, you have hair issues and it isn't even your own.

The other day, we were in a dress shop which specialized in prom and pageant dresses. Most of the big fluffy dresses were in plastic garment bags. It didn't take too long of looking through the racks until my synthetic hair was....well, standing on end. The static electricity got to it. Very fun.

Then there was the time I was on Martha's Vineyard. I had to scoot into a shop and buy some barrettes to hold my hair back and contained....and it wasn't even my hair! What an insult.

I also don't particularly like it when my new wig, which has longish bangs, pokes my eyes out.

But at least it's warmer than not having anything on my head!

The ultimate insult? My favorite salon sent me a$10 gift certificate for my birthday. Using it for a new hair-do is out...and my fingernails are too sensitive for a manicure. Growl. Ah well, it is the thought that counts, right?

Side Effects of the week

2011-02-11T20:10:00.000-08:00

I have been thinking for the last couple of weeks that the pain I have been experiencing in my side, back, shoulders and spine seem to be muscular in nature and the more I thought about it, I wondered if it wasn't fibromyalgia. This was especially brought to mind because of the neural (nerve) connection with the Taxol based chemo drugs. I was speaking with a friend who had experienced a bout of it after falling from a horse.

Today, I asked the oncology nurse, now mind you, I had spoken with the oncologist and the nurse before. She said "Oh yeah, it's common with Abraxane." Well, OK, now I had a cause. Does it go away? She said that usually, it goes away gradually, much the same way it came on, but in some cases, it doesn't. Ick.

I have a hard time rolling over in bed, getting in and out of the car, and miscellaneous other tasks which cause me to bend and twist. Sometimes it's more than that though. I can be talking to someone and breathe in and that lung motion causes me to feel like I have a knife in my back.

Another side effect I wasn't aware of is temporary blurriness of vision. Thank goodness! I was getting ready to go into the eye doctor's again. I just got my glasses in October and it has been a yearly occurrence for the last 5 years. A new pair in 4 months was making me worried that perhaps I had diabetes on top of it....but I am pretty sure I don't...it was just another side effect.

Sigh. I'll just keep on keeping on. I still can handle all this...it's annoying, but hey, it's better than the alternative!

Blessings

2011-02-07T18:42:00.000-08:00

Sometimes I wish more people could visit cancer treatment centers. I meet the most wonderful people there. I have an awful tendency to just start talking to people. Quite often, I will overhear something and I want to try to give people some hope, or perhaps an observation or experience I have had which may help their treatment go better.

Sometimes what I get in return is far more valuable.

This last Friday, I was sitting next to an old man....imagine if you will, someone with a baseball cap pulled low on his head, a weathered, prominent face and ...well...next to no teeth. His daughter was dark haired and her skin was pulled tightly over an angular face. She looked like one of the dark Scot's Irish descendants who live in the hill country of Ohio and Kentucky. She could easily have passed for a cousin of Loretta Lynn.

I started talking with the gentleman. It turns out he has had prostrate, lung, and bladder cancer over many years and now, like me, the cancer is back in his bones. He was unsure which of the cancers had metastasized. It does make a difference, because some of the cancers are easier to treat once they've gone to the bone than others. I told him that he and I were sharing the same experience.

He leaned over and asked me, "Does it hurt?" Well, yes, sometimes, but not all the time. "What do you do for it?" I take ibuprophen and try to keep my chin up. "Oh. Ibuprophen only works for about an hour on me, then it comes back to hurtin'. " Oh. I encouraged him to tell his oncologist exactly how much it hurt him. But, I felt really badly. Mine only hurts for a while...and lately I think it is the muscle and joint pain associated as a side effect of the various drugs I'm on.

We talked for a bit...as I got up to get a glass of water, he laughed and said he can't abide water. Coffee he drinks, but he never had a taste for water. I love water as long as it's really cold and I thought of my own father who when asked if he drank, he responded, "yes, all the water I can get my hands on."

He looked at me and said a blessing to me. Then, a bit later as I got up to go into the treatment room, I wished him well. He called out another blessing on me...that the "Lord will keep you and heal you..." He repeated it. I looked at him and said I wanted the same for him.

I was touched. It occurs to me that we all need to "call down blessings" on people. Ones we know, ones we don't. Ones we see everyday in struggles, in the grocery store, on the street, and just anywhere in our busy lives. We need to call down blessings especially on those who annoy us the most. I can't help but think that in this blessing, which by the way...saying out loud is not something I'm comfortable with...but I have to say felt very comforting when he said it, actually brings down just as much blessing on the one who gives as the one who receives.

Side Effects

2011-02-02T17:02:00.000-08:00

No, I do not smoke. Nor have I ever touched a cigarette, yet my fingers look like I have had a long established nicotine addiction. This is one of the side effects that Abraxane has had for me. In addition to the discoloration, my fingers are tender. It feels like I severely bruised them and I have trouble picking things up.

Peripheral neuropathy is one of the side effects which is acknowledged on the manufacturers list, although usually it just says "numbness" and "pins and needles." Each series of treatments, I discover new side effects. Some of them go away after that series of three drips is done. Others stay with me. Baldness, obviously, stays with me and is almost universal (although there are a few people who haven't lost their hair completely). I expect that at some point, my hair will start growing again, even though I'm still getting treatment. At least, that's what it did the last time.

Other side effects I have had are pimply bumps on my scalp (one time); rosacea like rash on my cheeks (one time); heart burn (pretty much all the time although Prilosec works on it); bloody nose (all the time, but minor as these are just capillaries in my nose for me, other people have much more strident nose bleeds); muscle pain (like I have pulled muscles, started on one side, and this month has moved towards my back); joint stiffness and soreness (this time is the first, so I don't know if it will stay or not); dehydration (pretty much every time); dry skin (ditto); in ability to taste (returns the week I'm off, then goes away again); the munchies (from the steroids, largely just in the first couple of days after treatment); and fatigue.

The most difficult to deal with is fatigue. It sort of scares me about what I can get done and what I want to get done. Yes, I know, I have to understand and take it easier in some areas, but I do have a list of things which needs to be done before May. Seriously. I have made some decisions and have put things on the back burner and I know I will have to put more there as time goes on. It doesn't stop frustrating me though.

I'm also hoping that the pain I have in my pelvis, in the acetabulum (socket) goes away as I'm not happy at the thought that I won't be able to walk much anymore. Walking and hiking were my major sources of exercise. I envisioned myself going back to hiking with my husband once my daughter goes to college.

Of course, one of the other side effects, common to all chemos is "chemo brain." You just get fuzzy in your thinking. Sometimes I mis-speak someone's name even though I KNOW who it is I'm talking to or about. Sometimes I just forget to do something. It's not as bad as the fog I was in when I was on CAF, but still, it is annoying enough.

I do want to post at least once a week. However, sometimes I am waiting to get a good photo. Maybe I should skip the photos and just type. :)

Anyway, stay warm.

From the Mouths of Doctors

2011-01-26T19:44:00.001-08:00

I was astounded last month when I went to an American Cancer Society's "Look Good, Feel Better" program. One of the women there said that she didn't wear underwire bras because her doctor said that it messed up the lymphatic system and may have a part in getting breast cancer. I was astonished at this, but thought perhaps something had changed since 12 years ago when I first heard this old wives tale and after all...it was her doctor who was saying it.

Then, last week, when I was looking at carpet, the sales woman spoke to me about her boyfriend who was diagnosed with a rare form of kidney cancer and his doctor said that the "city water caused it." Well, that I knew was complete hogwash because there is absolutely no documentation or evidence of in inordinate amount of kidney cancer in this area, which you would find if there were something to be said for that accusation.

The underwire bra comment seemed to me to be hogwash because first of all, the underwires are not that tight as to constrict the flow of anything. In addition, the lymph glands are not on the underside of the breast, but on the upper part of the chest and under the arm. So, I looked on line to see if there had been any further studies...no, just the old chestnut from the anthropologists who wrote a paper citing anecdotal information (that is to so, no scientific study but a "he said she said" situation which was shot down pretty strongly by the medical community. Nothing new.

The next step was to talk to my oncologist who practiced at the Cleveland Clinic and keeps up on the very latest of information. He said no, that that was incorrect. He hadn't heard of anything about that and it didn't make sense for the same reason I thought.

So, if someone makes some flat statement like that, check to see if there has been a study which has been published and review, preferably in a medical review such as Lancet (a British Publication) or the New England Journal of Medicine. Other countries have other high end , heavily reviewed and researched periodicals. If there is a study cited some where, look to see how many people participated (it has to be a big study in order to see if the sample proves anything or not) and for how long. Were there follow up studies by other doctors which proved the same results? If not, then this may not be real medicine, but folklore.

It's hard. You don't want to say "Your doctor is an idiot and should probably be practicing in a barnyard".....Sometimes you can ask questions to get people thinking. And sometimes you can't.

Signs and Portents

2011-01-17T18:00:00.001-08:00

I admit, I do believe in miracles. Because of some things which have repeatedly happened to me which are out there....and well documented, I also believe in the super-natural....above the natural world.

I don't know what works. I do know that there are charlatans out there as well as people who do have gifts which cannot easily be explained.

What annoys the living daylights out of me is when people use these aspects for financial gain...particularly if they have no real psychic powers. More than that, I don't like it when people who are at their most vulnerable are exploited, given false hope or in even worse scenarios, given concoctions which will actually hurt them.

I think there's a lot out there which isn't easily explained. Some people are healed and some not...and we don't know why.

I did have an interesting thing happen the other day. I went to a healing circle and there was a "sensitive" who knew my story. She told me that I wasn't going to die from this and that I had to learn to allow people to help me and do things for me. That the gift was actually for the giver.

I thought that was a little interesting because I learned that lesson the last time. I know I had a look of absolute puzzlement. I think I still do. I believe that this person projected what she thought I was experiencing which wasn't the case.

Heck, if anyone wants to come over and help paint my family room and my bedroom, I'd be more than happy to take them up on it. Mop the floor, help me sort out stuff and generally get everything in tip top shape for big family doings in May..... No one, so far, has offered.

Sometimes I see people in treatment who see things and take it as a sign that one thing or another is going to happen and sometimes it scares me. For instance, seeing these two vultures and thinking that they were portents of their impending death when it may or may not be so.

I can tell you though, that my shoulder and side hurting and my fatigue means that I need to remember to get everything done in the morning when I'm still fresh...because every night at about 9:00, I crash....at least after the Decadron has worn off!

So please, if you are walking this path, please hold the positive things and throw out the negative....only take the signs which are useful to you...and always keep hope at your side.

Take the Fruits of your Labors Today

2011-01-11T20:27:00.001-08:00

I meet the most wonderful people at the cancer treatment center. I am beginning to feel like it is very much like "Tuesdays with Morrie." Last week, I met Doug.

Doug has a sarcoma which has wrapped itself around his spinal column at the cervical vertebrae, has gone into his lungs and has also spread to his shoulder. He is 62, started working when he was 9 years old on his father's farm...just big enough to touch the pedals on the tractor.

I was amazed as I was trying to sketch out a design for a quilt with trout and as it happens, Doug is a fly fisherman. He is, like me, originally from Michigan. He started telling me stories about the Ludington Light and other areas and I was a welcome audience because I knew the places of which he spoke.

Doug has to wear a cervical collar as any jarring might cause damage to the vertebrae effected by the cancer. Doug said that one of the hardest things for him is the fact that he has to ask people for help, and sometimes what is offered isn't what he really needs. He's learning though, to accept it. For all his life, he's the one who has been offering help. Now, he needs someone to help put a tarp on his fishing boat.

Doug kept on saying that the first thing he's going to do when he kicks cancer, is to rent a motor home and drive his mother to visit his sister in Olympia, Washington (amazing as that's where my sister is too). Once there, he's going to fish some of the rivers....he's already working on it.

And he should. Even though things look really dire, the chemo is working and some of the spots are leaving. I'm pleased for him. He has a real positive attitude and is planning for the future.

What is sad, though, is that most of us have to be smacked up along side the head with cancer before we realize that no one notices if we take vacation or not...the world doesn't roll to a stop if we take time for ourselves...and we really need to tie a fly on and lay it out over the water...and catch our own whopper of a trout. Who knows? Anything can happen. Carpe diem...

Protect Yourself

2011-01-04T19:46:00.001-08:00

Sometimes we need to hit our friends and relatives over the head. When I was in treatment last week, I was talking to a woman who started chemo the same day I did. She has a very rare form of bowel cancer which they don't usually see until people are in their 70s. She is 34 with two young boys.

I asked about her Christmas and she rolled her eyes. She had gone to a family get-together and was sitting next to her husband who was sitting next to his brother-in-law. All of a sudden the brother-in-law started coughing. He said "Oh, I just got over the flu. I got it on Monday, but it's gone now (hack hack hack). " She cringed and stayed away from him..her husband did not and 4 days later, he too came down with fever....he had caught the flu from the other.

This meant that the woman had to do spend several days at her uncle's house where everyone was healthy because her blood counts were so low she didn't dare stay in the house with her sick husband. While there, her cousin said "Let's go to Walmart." She answered that her blood counts were really low and she dared not. "But it's just Walmart, " said the cousin.

Sigh. The fact that we are so susceptable to anything which comes down the pike seems to slip by people....no matter how often you remind them. One thing I recommend is asking your doctor exactly when your counts are the lowest (the nadir of the chemo) so that you can avoid people especially during those times....hopefully it sinks in. I also avoid large groups of people and try to remember to wipe the handles of the grocery cards and baskets I carry, or I leave my gloves on. This is especially important as we head into the greatest period for getting colds and flu, traditionally starting now and peaking in February and March.

However, don't get your hopes up. Last week, my husband's cousin invited me to go with her and her sister to Toulouse. From there, her plan was to go to Barcelona and Lourdes....after all, going to Lourdes would be good for me as I'm sick. Only one problem...I get treatment every week for three weeks, and three days after getting treatment I crash from fatigue...the steroids mess up my sleeping so much that when I come off them, I hit with a bang...the fact that the blood counts are lowest then doesn't help either. The concept of having to be on an airplane...not to mention catching flights and connections, given my present state of being really leaves me cold. I'd love to go to Toulouse, Lourdes AND Barcelona....but it's just not going to be now.

Keeping things in Perspective

2010-12-17T20:36:00.000-08:00

I love this sky...but the powerlines and the transmission pole get in the way. Wait a minute, that's a defeatist way of looking at things! Is the sky any less beautiful for the obstructions? Not really. The clouds with the light are so spectacular that you don't really pay attention to them or the roof of my neighbor's garage.

Chemo is that way I think. This last week I was really tired. It seems like I can't recover until Thursday mornings. Which is a pain in the derriere. Friday, I spend most of the day in treatment or driving to or from....I admit, I make two stops at least so I COULD get home earlier but still, I come home and do a little housework, then I have to make dinner, blah blah blah. Saturdays, I'm usually spinning around like a top from the Decadron (a steriod I am given by IV to reduce nausea). That continues through Sunday....until Sunday night at 8:00 or 9:00 I crash. Mondays, I'm exhausted. Tuesdays, ditto. Think so tired that your eyes are watering. I wonder if this is because I am the least fit I have ever been in my life....coupled with the fact that I am no longer young, but middle aged. I never was like this before.

This Wednesday, I spent getting a bone scan (it takes 3 hours to get the radioactive material circulating through your blood stream, then about 2 hours for the scan and reading it to make sure there are no problems....etc.). I don't if that added to my fatigue, but I wasn't even able to watch my favorite show. I have other side effects as well. Side effects can differ...this last week I had a breakout on my scalp....imagine the worse case of acne on a teenager.....but on my head and back of my neck. Add that to the bloody noses, dry and sensitive skin, thirst, inability to taste things (I can taste salty, spicy, sour) and baldness.

Every week, it is the same. Except, on the 4th Friday, I have a blood draw to test the tumor markers, and see the doctor. Repeat. Until the end of April if it continues to work. Longer if not. ARGH. It was easier on Taxol for me because I got a 24 hour infusion once every three weeks for 9 months. At least I was able to bounce back. I was beginning to feel a little sorry for myself.

Today was treatment.

She walked in about a half an hour after I started my drips. Short, but full of style. Red coat with black trim, black pants and a wonderful "bucket style" hat in a suede look fabric with a flat bow in front. She exuded beauty. She took off her hat to reveal a skullcap like I wear at home. No eyebrows, but an absolutely beautiful face....round and cherub like. I heard her say something about her bleeding nose.

I told her what I was doing for mine and we started talking about Taxol (what she's on) and chemo and things. She's on Taxol, the drug I had before, but the protocol has changed and it has been hard on her system. She had the bone pain, but she's also had to have multiple transfusions and one time she had an allergic reaction to something and she began to feel like she was floating. She's been having chemo treatments for over a year and she, like me, comes in every week and has a treatment unless her markers are too low.

That, my dears, put things in perspective. It is easy to find things that are wrong and to have a pity party. That's OK. We deserve to do that every once in a while....but I think the trick is to realize that we must keep it to a minimum.....and that it could be so much worse. I think most of us, no matter how horrible it may seem can usually think up another worse scenario....it's just that sometimes we need to have a stylish package sweep into our lives and show us the way. You Go KIM!

What to Do?

2010-12-06T09:56:00.001-08:00

Last week, I had an interesting experience and I'm still trying to figure it out. A couple of weeks ago, I was speaking with a woman at the cancer center. She had been exploring alternative medicines as well as taking anti-cancer drugs (I later found out she was on Aromasin and Faslodex and had gone over to Zometa and wasn't taking Faslodex). She had had breast cancer and had a nodule on her collar bone. Just as the chemo nurse came out, she had me scribble my name and telephone number on a piece of paper. "I'll take you to him when I go next" she said. Hmmm.

Last week, she did just that. "Him" was an Amish herbalist. I went in and he asked me what was wrong. I think I simply answered that I had breast cancer. He looked me in the ey, placed two fingers on my left side and said. "Yes, you do." I can't remember if I had said a recurrence of breast cancer, but he said, "You had this before and didn't get rid of it." Ok..He had me hold my arm out and didn't really tell me what he was doing....I gathered after the first push that I was to resist. He tore off a sheet with a diet and a list of herbal remedies he wanted me to use.

The diet is what has been around on the internet erroneously known as "The Johns Hopkins Cancer Diet"....which doesn't have anything to do with John's Hopkins. It is a plant based diet. You are only to eat fresh fruits and vegetables, whole grains, nuts (especially almonds), legumes (but not peanuts), real butter and no-salt added cottage cheese. All animal proteins, eggs, cheese, sugar, salt, white flour, peanuts and any other dairy other than the cottage cheese and butter is to be omitted. I have no problem with the diet, other than the fact that being Vegan with no eggs or cheese does take some work to make sure that you get the appropriate amounts of protein, especially for a person on chemotherapy. The diet is a good one and is very healthy for you in general...but I also didn't want to become a short order cook and I will have to cook darling daughter and dear husband animal proteins.

You are also supposed to make a quart of 50% celery and 50% carrot juice and drink it each day. It must be fresh. In theory, the celery is a detoxifier and the carrot has great anti-oxidant effects. I don't like celery. I went out and bought a juicer and made my first batch, throwing in an apple in an effort to counteract the celery. Did I say I don't like celery? I was successful last night with drinking a bit more than half. The concoction is over 6 large carrots and a bunch of celery. That's a lot of carrots and celery for someone to eat in one day's time.

While the healer doesn't charge for his appointments, you can buy the herbal remedies from him. I must say that after some research after I got him, his prices are good....but I still left a substantial amount of money....more than I should have.

The herbal remedies were Red Clover, whole apricots, Food Enzymes, Parsley tablets, and Pau d'Arco. I know that if I told my oncologist, he would probably have a bird. I researched each of the items. I immediately discovered that Red Clover, largely cited as a "cancer killer, but is something that I must stay away from. Red Clover contains isoflavones which produces estrogen-like substances in the body. More research is needed into isoflavones and phyto-estrogens, but the initial responses are mixed. I remember Dr. Bobrow saying "estrogen is estrogen and you need to stay away from it."

So....I am not going to take the Red Clover. The others seem to be more benign, but part of the problem with "herbal remedies" is that people tend to take them along with chemo and other drugs (like I am) and don't think about the interactions. In some cases, we don't even know all the interactions. After all, Digitalis (Foxglove) is an herbal remedy albeit a very powerful one . Much more research needs to be done on this topic, while in other areas it has been shown that some of the remedies just don't work.

Part of me says I shouldn't even look into this at all...at least not right now. I will say that I can't bear the thought today of drinking any more of the carrot/celery mixture. In fact, my stomach is quite upset today.

The lady I went with had had advanced breast cancer and following this procedure and other drugs, her large tumor has subsided. Part of me says that this may work.....the other part of me says that I know that the Abraxane is working (the tumor markers fell substantially), and that perhaps any more exploration of this should wait until after I'm done with the Chemo in April. It is a puzzlement.

I do believe in the mind-body connection. Some of the other things which have been put forward are completely unfounded upon further investigation. Do I believe that this healer is trying to hoodwink people? No. He believes in what he does and some people probably have been healed. Others haven't.

I don't know how or why I happened to fall into this position, but it really is making me think. The world cancer patients live in is often scary and it isn't just because of the disease and the treatment one gets through western medicines.

Out of the Mouths of Thoughtless People

2010-11-29T06:45:00.000-08:00

As old as I get, I never cease to be amazed by people. In September, my neighbor invited me to a "get to know you session" from a service organization in which she is active. About two weeks after that, I told her that I assumed it was a membership driven thing and that I was putting all such activities on hold and curtailing some of my other activities while I am fighting this bout with cancer.

Last week Wednesday, I got a telephone call from one of the members of the organization asking me if I wanted to join. I told her that as I was currently undergoing chemo for stage IV cancer, I am not joining things at present but would get back in touch if something changed, and that I was fairly close to the person who invited me and would work through her. This lady's response was "OH! You're one of the lucky ones!" Lucky? I'm undergoing my third series of treatments, the second for a stage IV diagnosis, and I'm Lucky???? Ok...So I AM lucky, lucky that I was born with more brains and sensitivity than to say to someone who has cancer that I think they were lucky. I will also admit that I am lucky to be able to draw my next breath....but I doubt that she would take to kindly to me saying that she was just as lucky.

Which brings me to another rant.... When I posted about my first treatment with Abraxane, someone left a comment telling me that I needed Vicoden for chemo pain (what pain? I only had pain for the first two weeks in the area of the cancer, pain is NOT a given for chemo as this person was intimating) and that it was available on line without a prescription. ARE YOU FRIGGIN NUTS???? Even if these drugs were pure and on the up-and up, they should ONLY be dispensed by a physician who is following you....and on top of it, narcotics make me really queasy.

The next wonderful thing was the comment left when I wrote about losing my hair to chemo. This was another blogger who was trying to get me to buy his product for hair loss. Well, dang.....that's all I need...slap a little rogaine on my head and that will prevent chemo hair loss. Well shoot. The thing which annoys me about both of these things is that there doesn't seem to be a place on blogger where I can report these nimrods to get them pulled.

So...long story short....I'm feeling well and as feisty as ever even though my taste buds are fried and I seem to be tired. Enough so that I'd love to smack all of these people who have no ability to keep their mouths shut and their money grubbing hands off people who are vulnerable and may be looking for some kind of relief. So I guess I'm doing A-OK. Oh yeah, and I'll get my first report on the tumor markers later this week. :)

And thank you for the opportunity to rant. On the sweeter side, my daughter called one of her friends who shaves his head every two weeks to come over and buzz my head....she couldn't do it because she was scared to, but she didn't want to see me scratching my head as the last little bits fell out. So....he came over on Sunday and did a really nice job. For the life of me, I can't figure out why any guy would voluntarily keep his hair 1/4" long in the wintertime...but then again, he wore his knit cap all the while he was in the house....as do I.

Comfort

2010-11-22T19:22:00.000-08:00

Not long ago, I attended a lecture by Kristin Armstrong. Kristin is a motivational speaker, an author and the ex-wife of Lance Armstrong. My husband and I, being bike riders, had followed Lance's life especially since his diagnosis of advanced testicular cancer came at about the same time as my stage IV diagnosis. In fact, we both were on the same chemotherapy.

In her talk, Kristin brought up how important it is to develop a strong group of friends. Not only was it important to your regular well-being, but in times of great difficulty, you would need to lean on them and they would support you. I felt a little sad about this as I am about 10 years Kristin's senior. I also knew that while it was easy for me to make friends when my daughter was in elementary school, moving down to Ohio when she was in junior high made things a lot more difficult. I wondered about how I would approach this new diagnosis knowing that the unbelievable amount of help I got in my second diagnosis in 1998 was so much more than it was in 1994 when I had only recently left work and hadn't developed much of a support system outside of my workplace....and family was far away.

I thought of this comfort quilt I made for Teresa Rorhbach to give to her neighbor who was undergoing chemo. What a great gift!

It wasn't long after I was thinking about that, and pulling out my healing quilt which was made for me in 1998 to take down to my treatments in Kettering, when this knitted prayer shawl came in the mail. I was dumbfounded. While I haven't been able to make many connections with the church here, in fact for the most part I find it pretty cold, this prayer shawl came from St. Andrew's Episcopal Church in Meriden, Connecticut. I know the ladies who work with the prayer shawl ministry there, but never in a million years would I have thought that they would send a shawl that they had made with love and prayed over and sent down here more than five years after I left Meriden. I was dumbfounded.

Getting chemotherapy often makes you cold because sometimes the drugs are refrigerated, but even if they aren't room temperature drugs are colder than your body temperature. In addition, in my case, I usually wear turtlenecks and sweaters, and I can't wear those for treatment as they need to be able to access my port. So, having a blanket or something is very nice.

This particular quilt was made for me by a bunch of my quilting buddiesin Meriden, spearheaded by Lynne Grobsky in 1998. Each block was given to friends and family to be signed. This one was from my neighbors and it says "Question: Weed or flower?" as I was often called over to identify plant material.

Marina Mozzi made this poison dark frog, outlining the spiritual powers that frogs hold.

My brother, the small grain farmer in Montana, made this one. "From the Atlantic, wide open spaces, to the Rocky Mountains, " and shows a tractor pulling a seeder and is "signed" even by the dogs, as was the weed or flower block. (Dogs like me. :)).

The last block is one from my sister with two pink ribbons, either one for her and one for me, or for my two trips to the chemo bar at that point, I don't know...and with scripture on it.

All of these things are sort of miraculous and the thought and effort that went into them makes getting treatment a little easier to bear. I urge you to find a support group before you need them...and work to support others. The comfort or healing quilts DO make a difference....even if only to fill us with wonder.

Hair Today, Gone Tomorrow

2010-11-19T22:12:00.000-08:00

Although my weird sense of humor brings to mind the cartoon I saw as a child....and a later joke...Hare today, goon tomorrow. I can't remember if it was a Popeye or a Looney Tunes cartoon.....

Yesterday, I started losing my hair. Not as much as I did when I had Taxol and CAF, but enough. I hemmed and hawed about shaving it. And then I didn't do it.

Today, it started some more, and it was no longer fluffy, but flat....and I hemmed and hawed some more. It's funny, the last time, I had no problem going into the bathroom with my electric hair cutting razor and shaving it. This time, I wasn't so sure. Maybe because it had been 13 years instead of 4, I was having second thoughts. The clincher though, was when I was baking and I was terrified that I was going to lose hair into what I was cooking. And of course, my scalp began to be a little unhappy.

It's funny....when it begins to go, I can only describe it as hair follicles as having little individual headaches. I think it is from the hair sort of pulling and dropping.

When I went into treatment today, it was funny. In the waiting area, I sat next to a man and his wife. He was being treated for multiple myeloma. Out of the blue, he turned to me (and mind you, I had all my hair at the time...as I did in the first picture) and he said, with tears in his eyes, "The hardest part about this so far has been losing my hair.....and I don't know why." He had gone into a barber shop and had it cut short, but stopped short of it being shaved, and I would say his hair was about 1/4" long. He was 72, and I must admit I was of somewhat a sexist bent in my thinking as I wouldn't have imagined that that would have been as much of a problem for him.

I think, perhaps, that as long as you have your hair, it creates a barrier. You are not obviously fighting cancer, even though many chemotherapies now don't cause you to lose your hair, there are several, particularly "the big guns" which do. Once you cross that line, you are outwardly fighting cancer.....and that can be tough.

Don't get me wrong, having no hair is COLD. Especially in the winter, even inside. For a woman, a lot of femininity and who she is is expressed through her hair. For many women, losing hair is more traumatic than any other part of the cancer process. It isn't for me, but I really understand where women are coming from. The kicker is, many, if not most, insurance companies do not cover wigs as they are deemed "cosmetic."

So...here is a not great shot of me as I appear now...all shaven and shorn....at least I'm not the cow with the crumpled horn!

Wigged Out

2010-11-13T18:23:00.000-08:00

I never thought that moving to the greater Dayton area in Ohio would be putting me in the netherworld as far as wigs go. At least it seems that way.

When I first had chemo in 1994, I was blessed to have been referred to a wonderful wig guy in Hartford, CT. In fact, I went to two shops, but the second was...a little odd. You went to his place which was ONLY by appointment. You were his only customer when you went. When I went to the other place, people were coming in for hair extensions, etc. I had one other cancer patient who was actually younger than I was. While we were there, someone else came in who couldn't understand why the two of us were imperative about getting a good wig, one which suited us, at a price we could afford and ASAP. So, when I went to this other guy's place, I found it much better.

He spent a lot of time and found this wig, which wasn't cheap. It is a synthetic wig, but a high quality one. It matched my real hair perfectly...and while it is hard for most people to fit wigs while you still have hair, he did a good job. He also hand stitched the netting and made adjustments so it was a perfect fit and was comfortable.

When I had cancer the second time around, I had saved my wig which was a good thing. The insurance company, a major one, had stopped paying for wigs for chemo patients because it was cosmetic. So, I went back to the wig guy and he styled it for me again and I was good to go. Because I was stage IV, I kept the wig...as I didn't want to be without it if I needed it again.

Fast forward to now...13 years later. I still have the wig, but since I'm a lot older, I thought I should have it styled a bit shorter. I also wanted to wash it. In looking at it, I noticed that I had some singeing...obviously from opening an oven door while wearing it, another reason to get a trim.

I needed to get some wig shampoo because I needed to wash it, after all, it probably had dust in it and I didn't wash it very much when I did wear it because every time you wash it, you shorten the lifespan of the wig. They usually suggest washing it about every 2 weeks if you wear it for 10 - 12 hours a day, and I didn't wear it that much. Washing must be done with wig shampoo (products for human hair don't work well...think of what happens to baby doll's hair when their mini-moms wash them ). Wig brushes should also be used, and when not worn, they should be kept on a wig stand which is ventilated. Mine is a wire one. The openness, rather than a styro-foam head, allow the wig to breathe and dry out as your head sweats.

I called around trying to find some wig shampoo....no go. I'm going to check at one place which sells wigs and mastectomy items....but we'll see. I wasn't too impressed with that aspect of this place when I was there last. I loved one salon's response "take it back to where you got it from." I'd love too. Too bad it's in Connecticut.

I finally got someone who would cut it....but it's a professional hair stylist, something some people advise not to do, but there's a dearth of people who will do it around here. Ask around. Try to find someone who has experience and is trained in working with wigs. Hopefully, I'll be able to add some curl to the bottom of my wig again so it turns under as a page boy should...only this time it is about 4" shorter.

The hairstylist suggested buying a wig with substantial human hair...the only problem is that I don't think she's aware of how expensive human hair wigs are. I still think that getting the most expensive wig you can afford is probably the best bet--they will probably look the best. Check with your oncologist for suggestions. Call the local chapter of the American Cancer Society to see if they can suggest something.

The American Cancer Society has a catalog called T.L.C. which has a variety of wigs and artificial hair in a wide range of prices . Check here. They also carry a lot of hats and lingerie items for lumpectomy and mastectomy patients.

For more on wig care, look at these websites: Feke Wigs and Ace Wigs. Go to an American Cancer Society's "Look Good, Feel Better Program." They will give you more tips about the care of wigs, using cosmetics (including a lot of samples which are very helpful) and also ideas about using hats, scarves etc. It's a great program and is free of charge to cancer patients.

And try not to bake with your wig on....it isn't pretty when the tips melt. :)

Unhinged

2010-11-11T18:55:00.000-08:00

This week has left me a little unhinged. The Abraxane seems to be working....at least as well as I can tell. I have been feeling winded, short of breath, which I suspect is the effect of losing significant red blood cells. The red blood cells carry oxygen, so if your counts are low, then you feel tired and out of shape.

The out of shape part is sort of worrying me. In my previous battles, I had been in far better physical shape and therefore had less side effects. I am in pain, in my shoulder and in my chest which I am fairly sure is from the cancerous lesions. Part of me wonders if I can pull out from this as before, I didn't have pain. But then again, my hip doesn't bother me all the time, just when I overwork it, so perhaps there is hope there too.

I will find out what my blood markers when I go in for another treatment tomorrow. I don't think he will check my tumor markers until the day after Thanksgiving. I've been struggling trying to get areas of the garden cleaned up...I can handle only one section a day. My daughter gets after me, but if I don't do it now, I don't know what I'll be like in the spring.

Tomorrow I will drive myself to treatment, as I always did when I was in Connecticut. I think it is easier that way and I will continue to do so as long as I am able. It is difficult to get my family to understand that I am not able to do as much as I want.

I am also a little unhinged as they seem to have developed a sort of hedonistic approach. I keep on hearing the two of them say "Life's short." While I have wanted a new stove (ours is 1989 and while it works ok, it isn't level, has been severely beaten up by previous owners, had pitted and nasty burner pans, and the oven window is obscured by some sort of guck which has become mired in between the layers of glass and I can't clean it. On the other hand, said daughter who got an interview request for the University of Akron based on her essay and application, has yet to call and set the date and keeps on moaning that she doesn't know if she wants to go to Honors College with "all those braniacs." She has very little understanding that she is smarter than the average bear.

Tomorrow, I hope to talk about my adventures in wigdom. Until then, I will leave you with the words of A. A. Milne as voiced by Christopher Robin to Pooh. One of the Batty Binders quilters sent this to me on a fabric post card:

"Promise me you'll always remember: you're braver than you believe, and stronger than you seem, and smarter than you think."

In My Daughter's Words

2010-11-06T20:12:00.001-07:00

My daughter is a chip off the old block...and by that, I mean she is the feminine version of my husband. I've been worried about her and how she is dealing with my recurrence. She, like my husband, hasn't been talking to anyone about it. She only told one of her friends. I've spilled the beans on it to more than she has.

She, and my husband, tend to just stuff it. They are scared, but they won't verbalize it. Often, the way my husband's family deals with significant troubles is just to put themselves into a state of denial.

My daughter is a senior and is applying to various colleges. This is her essay in her application to honors college to a public Ohio University. I'm sharing it with you because I think it is pretty good, especially for a girl who hates to read and despises writing even more (see? none of my genes are present!).

"I want to know how to get the most out of my time on earth. Albert Einstein once said “Once you stop learning, you start dying.” There is no point in continuing if you know everything, and do not learn from your mistakes. I want to seize the day. If a day goes by where I have not accomplished something, learned something, or most importantly had fun, it is a waste of precious time. We are not immortal, and eventually we will all die. For all we know, we could die tomorrow in a car crash, or next year of cancer. Instead of being afraid of death, I want to learn to live life now. When I die, I want to know that I have lived a fulfilling life, and done all I could possibly have done.

Conversely, I have not always lived my life with this philosophy. This realization is rather recent, and my relationship with my mother has played a huge role in it. Until this year I really didn’t have much motivation. I didn’t have a drive to want to learn, everything I ever really wanted to know, my mother already knew. If I had a question, I would ask her, and she would know. Most of the time I found her wide range of knowledge annoying. I would want to know who the third President was, or when the first airplane was made, and I would get an answer to my question, and all else there is to know on the topic.

Unfortunately, right before my senior year, in May, my mother’s cancer returned. In 1994 she had it in her breast and underwent chemo and radiation. In 1997, it returned as stage IV, in her breast and pelvis. After a tough fight, as I moved on to first grade, she moved on from the disease. Until this year she has been clean, that’s thirteen years, cancer-free. Sadly, cancer never really leaves and next week she will undergo her first round of chemo. It has spread to her ribs, sternum, shoulder, and hip.

Knowing how cancer works, and the intensity of what my mother is fighting, I am smart enough to realize she will not be around forever. I have to learn how to still ask questions, but find the answers on my own.

What I really want to know, you can not take a class, or read a book to learn. I want to know how to be strong, and fight like my mother. I come from a line of strong women, women who speak up for themselves, make their own money, and make their own life. They do not need anyone to help them through it. I am still young and do not feel like there is anyway I can live up to these women. I have a huge legacy to follow, and have already wasted precious time.

I am not one to lie, during the early years of my schooling I did not challenge myself much. My personality is not competitive and as long as I got all A’s, my parents were satisfied. I had a care free childhood. Even my pre-teens, in a private school weren’t terribly challenging. Until sophomore year, I didn’t know what hard work was. I now know what it takes to struggle, and learn something new. Battling through new material has been draining, but I feel refreshed, and renewed, everyday.

As I am also a cross country runner, I know what accomplishment feels like. Every week I get done with a ten mile run and feel fulfilled. Lately, learning has given me even more of a rush. I feel as if every moment I spend not challenging myself, I am wasting my time.

My time is precious. If I am to live up even slightly to my mother’s legacy, I should have started studying a few years ago. Actually, I should have started reading much more in third grade. I am not the common overachiever. In fact, I would describe myself as faithful procrastinator. Strangely, there is a drive in me, probably from my mother, that makes me dive into my work and finish it. Once I get into something like a math assignment, organizing a team event, or writing a paper, I put two-hundred percent effort into it. This has always been the case.

Again, I am not your typical overachiever. I did not apply to Harvard as a “reach school,” nor did I take a chance at North Carolina. I want to be at a school that fits me, and my lifestyle. No matter where I end up, I know I am going to make the most of it. Being a part of the Honors Program is a step toward my future, full of challenges and life. "

I guess she'll be OK...at least this is a good step forward. I'm pretty proud of her. She's got a lot of growing to do, but I think she'll do just fine. Maybe she is a chip off her mother's block as well.

Ports and Paclitaxel protein bound

2010-11-05T20:23:00.000-07:00

On Wednesday, I got my port, and yes, I am happy it is a Bard subcutaneous variety. Rather than a surgeon, this time a Radiologist made the placement. The port is nestled under my clavical and the line runs to my jugular vein. I told the doctor about the extra stitch (hey, I'm a quilter! Stitches are important!!!). He was receptive, and said that generally, ones radiologists put in don't flip, but that he would be happy to stitch it in firmly.

He had to put it above the area where the other port was as that one was sub-clavical and went to the veni-clava. So...more scars and bumps. Maybe this is some sort of tribal scarring we are supposed to get? Maybe the gurus could work on something to make them a tad more attractive....

Somehow I feel like a vampire has claimed me. Hmm....aren't Vampire's immortal? I don't want to be immortal, but a few more years sounds pretty good.

There isn't really any discomfort, except that the tape sort of pulls at my neck. I feel like a horse with a martingale set of reins, which sort of keep the head from rising as part is attached to the girth through a D-ring....supposedly to increase the contact and ease of communication. I don't remember much from my horsey days....that was a long time ago, but I can say that this lets me know if I am moving my head too quickly.

It did take me a while to clear the sedatives from my system. I am resistant to most sedatives, to the point of being completely awake and feeling it when I had my colonoscopy. I warned them, and indeed, again I was awake but it certainly didn't feel bad. I just was groggy when I went home and well into the next day.

Today, I got my first dose of Abraxane (Paclitaxel-protein bound, the actual description of the drug rather than the brand name ). I had some irritations, but none caused by the drug. First, my appointment was for 10:00. At 11:00 they finally took me in to draw the blood for the CBC. As I sat there, the nurse asked me if I would like a blanket or anything else. I thought a glass of water sounded good, and she asked if I wanted ice. OOOH. I love ice water.

Then, they started a saline solution with the steriod, Decadron. In the past, I hated Decadron as it make me not able to sleep. Harumph. Then they put another bag of something else on. At 1:00, that bag finally finished. And I waited as the alarm on my pole was going off. And I waited. A nurse looked over and came over and asked me who my nurse was. I told her and she said, oh. She's at lunch, but she's supposed to have someone cover for her. 20 minutes later they came an hung the bag of Abraxane.....which only takes 30 minutes to transfuse. Hmmmm.

I didn't really come prepared as I was told that the drug "only takes 30 minutes so you're not there all day." (!!)." So....I sat there. Eventually, my two neighbors joined me....one, well, she's a little pushy, which I have noticed is not the tactic to take in this office. Next time, I plan on going it alone, with quilting stuff, water and quilt in tow. That water and blanket? It never came.

However, so far, so good. I'll keep you all posted on side effects.

Any new port in the storm

2010-11-02T18:37:00.000-07:00

Sorry, no pictures. My daughter is snarling at me because I couldn't save her Spanish IV homework on the upstairs computer and according to her, that's the only computer which an do the Spanish accents.....of course, it is also the computer which has PSE and my photos on it.

Tomorrow, bright and early, I get to go to Dayton to have a new port put in. Having had CAF in 1994, my veins were shot. In 1998, I had a port put in and had it removed just 2 years ago. After a bunch of screw ups at the doctor's office (none having to do with the doctor, just his clerical staff), I will start Abraxane on Friday.

I keep on trying to remember what the port felt like. A port makes it easier to access the vein. There's little membrane and that's where they stick the needle. No digging. No diving or rolling veins. Two types of ports are commonly used, the Hickman (which is not subcutanious) and the Bard, which is. Hopefully, I will have a Bard because you can shower, there's less problem with infection and that's what I'm used to.

My surgeon was good. He added a second stitch which prevented the port from flipping, a common problem. He never had a port flip, and the other surgeons were amazed, until he told them about the extra stitch. He said that it was a small matter of time, but for the patient made all the difference in the world. He explained this to me after he kept on saying "Mine don't flip." I thought he was being arrogant, but after his explanation it seemed to make sense. Mine was deep, it was difficult for some people to get if they didn't take the time to feel the edges, but it always flowed well.

I remember waking up in the recovery room and being allowed to put my clothes on. When I bent down to get my pants, all hell broke loose. I started bleeding like a stuck pig. No one told me I should remain upright....but I'm still wondering how one puts on pants by oneself without bending over...or socks for that matter.

I was only partially dressed and had to ask the lady who was in the bed opposite the bathroom door to get a nurse, I swear she about fainted. I was fine, just putting as much pressure as I could on my chest. They called my surgeons assistant who was a BIG guy by the name of Dr. Aziz. Dr. Aziz had HUGE hands and he put one on my back shoulder blade and the other on the front where the port was and pressed. HARD. I remember asking that someone get a chair quick. Why? I was on the verge of passing out. I had Dr. Aziz's handprint on my chest for about a week.

On Friday, I'll start Abraxane (Paclitixel in a human albumen carrier....the human albumen is derived from blood...one of those "products" harvested from all those good people who are able to donate or sell their blood. We'll see how I do. Hopefully, as good as I did on Taxol as they are both derived from the Pacific yew.

I must admit, this is a bit scary. I never have had the discomfort from cancer as I have from this one. I fear that they didnt't move quickly enough. Hopefully, this will be able to stop it in its tracks. I'll get a 30 minute infusion weekly for 3 weeks, then I'll have a week off before starting again. I'll continue as long as it looks like it is working. I'll lose my hair, again.... The biggest drawback is that people complain of fatigue. Hopefully, I'll be able to breeze through that, but I am older than I was when I first got it. There are other things that the manufacturer note as side-effects. However, the only other one my doc mentioned as being common in his office is neuropathy in the hands and feet, which I also got from Taxol, only that never went away.

We'll see. Always an adventure. Trying to get the outside taken care of with digging and lifting as best I can before all this as I won't be able to do it for a while. Hopefully, the goldfish pond has stopped leaking (we did a repair which had pretty interesting happenings) and I got the big ceramic pots in good enough shape to weather the winter. What dahlias are dug are dug. I'm not going to be able to dig any more. Oh well!

The Perception of others

2010-10-25T21:24:00.000-07:00

Today I went to place my daughter's graduation photo order. I had made this appointment last week, before I discovered I had to run to Kettering to get another treatment. The photographer was in Springfield, 45 minutes away. Doctor's offices are notorious for not being on time, so I let the photographer know that I might not be there right on time as I was getting another cancer treatment.

When I got there, I placed the order and we talked about my having cancer. One comment he made was "You must ask yourself all the time why this happened to you."

I think he was shocked when I said, "Actually, no. I don't think that at all." I've always been of the opinion that spending time in this way, moaning "why me????" is a waste of time. The reality is that those of us who are diagnosed with cancer are just sideswiped by evil. I would bet that most of the people you meet have some sort of burden. While you might think that theirs is minor, to them it may be all that they can bear. Sometimes, you never know the horrible things that people have had to withstand. Life is uncertain, both as to length and as to what will happen to us. To listen to anyone say that we are supposed to have it easy and go down a primrose path is a fool....or delusional...or both.

It is a rare person indeed who is absolutely happy with all that has confronted him. I prefer to look at the sunshine and bask in it's rays, to run in the rain and be thankful for the drink that the earth is getting. Why waste your time wondering "Why me?" Why not me? If you think that things like cancer happen to "someone else," just remember this, to everyone else YOU are "someone else." The only time I ask "why me" is when I'm trying to think of the cause of my cancer so that we might better fight it.

Getting Good Treatment: A cautionary Tale

2010-10-24T18:37:00.000-07:00

As I mentioned in my last post, I had an appointment for treatment and to visit my doctor on Friday. Originally, the appointment was set for Tuesday, but since I had visitors, I moved the date to Friday.

I went in and waited. I was ushered to the exam room and as the nurse deposited me there, I asked that perhaps while I was waiting for the doctor, I could have my Faslodex shot, but I hadn't had my blood test yet. She nodded, not saying anything and left.

When the doctor came in, I told him that he didn't have any labs because I hadn't been drawn as I was told that my appointment was for him, the Faslodex and the Zometa. He told me I wasn't supposed to have Zometa until NEXT month. That was odd, as when the nurse called, she had said all three.

I queried him as to what his plan was for treatment for me, something which is very important to do. This oncologist and I don't have a "partnership" yet, something I valued with my former oncologist. Sam Bobrow always told me exactly what he planned to do, when, why, how much and how often. I can't emphasize how important this is, especially after what happened next.

I got ready to leave after the exam and I was retrieved by someone who was going to do my "check out." I was puzzled and I said, I don't think so, I haven't had my blood tests yet and I'm supposed to get treatment. Evidently, when I was rescheduled, the scheduler failed to include my treatment switch. I told her that I really didn't want to leave without it...the injection takes 10 minutes and it is a 40 minute drive for me to get to the office. Ten minutes is an exaggeration as it probably takes less than that. So....I had to wait. I had to get put back into the lab and have the lab read to make sure that everything was a go to get the Faslodex.

Finally, I went into the room. The nurse said " Ok, we'll give you your Faslodex shot now, and then you'll come back on November 10 and get your Zometa and another Faslodex shot." I think you had better check that, I said. I'm supposed to get my Faslodex once a month and since today is 10/22, it is only two weeks until November 10th. So....I had to wait while she checked. She finally came back, his annotation was Zometa and Faslodex in NOVEMBER of 2010 (hence, 11/10). So, I got my injection, got scheduled for my next appointment and at 11:38 I left.....three hours and eight minutes after my appointment was scheduled... I ran some errands and went home, and had lunch.

I was packing for the quilting retreat I was supposed to go on at 3:30 when the telephone rang...at 1:38. It was the nurse....she had made a mistake and only given me half a dose of the Faslodex....that Dr. Sabier's wanted me to have two doses as that seemed to have better results. So, would I please come back.

I'm irritated now...not only do I have to go back, but the last dose I received was only a half a dose as well then....I got two injections the first and second time, and one in Sept., and I'll have two now. If the doctor had told me exactly what I was supposed to have and when, then I wouldn't have to make a second trip and I wouldn't have missed half a dose.

Why is it so hard for a patient to get the treatment they are supposed to get? Why must we fight so hard? Maybe it's just me, but I'd rather you all know to ask exactly what is to happen and when so you won't have missed part of your treatment and have to return. One can only hope that it isn't going to threaten my results by getting half as much in one treatment as I should and having another treatment spread out over several days.

Today and Tomorrow

2010-10-21T19:17:00.000-07:00

Today I was out working a little in my garden. My neighbor popped out and asked me how I was doing. I feel like this is always a loaded question. Do I tell them that I'm hurting and I'm afraid that this is what it is going to be for the rest of my life? I just nodded and said "I'm OK."

She proceeded to tell me about her daughter-in-law, a woman who is older than I am and was diagnosed with breast cancer last year. "She's cured!" my neighbor chirped. I'm afraid at that I just mumbled something incomprehensible and walked away.

I was irritated. At present, breast cancer can't be cured. It can be beaten back. It can be managed as a chronic illness, but it can't be cured. If it could, I'd be first in line to get the magic elixir.

Tomorrow, I go to the oncologist for my monthy dose of Faslodex, a once every three month dose of Zometa, and my once every three months visit with my doc. Hopefully, my tumor markers will have fallen. They take a week to get back to me. My current doctor, James Sabiers, is a good guy, but he's not used to working with me yet. He tends not to lay everything out and I sort of have to pull it out of him.

With my oncologist in Connecticut, Dr. Samuel Bobrow at the Hospital of St. Raphael's in New Haven, I felt like we were a team. We discussed things and he told me what the plan was...sometimes it was sort of fun as I proposed things and he thought about them....sketching out treatments on the tissue covering the exam table.

With Dr. Sabiers, I'm not there yet. He did tell me that if the markers rise, then the Faslodex and Zometa aren't working and he'll put me on chemo. Tomorrow, I'll make him outline what and how long. This will be the third course of chemo I've had if I get it. I'm pretty sure that I'll have to get it as my bones tell me that things are not going too well. Last night not only did I have the pain in my pelvis (the acetabulum) but I also had extreme cramping in my feet.

This summer, I made a quilt for a lymphoma patient. On the quilt, the person who commissioned it had me write a saying by John Wayne. I really liked it and wondered that I had never heard it before: "Courage is being scared to death but saddling up anyway."

Protecting the Cancer Survivors and their Relatives

2010-10-14T20:25:00.000-07:00

I've been thinking about the Breast Cancer Bill of Rights that the Susan G. Komen foundation has been promoting. They've been pushing for us to contact our politicians and remind them that we vote and that we want certain points to be covered. (I wrote about this on October 4). Their Bill of Rights just doesn't go far enough.

People who participate in studies which involve genetic testing, as well as those who have genetic testing done should not have to live in fear that their relatives could be denied insurance or have claims related to the testing denied based on the positive results for gene abnormalities which are related to cancer. Why? Having a gene abnormality doesn't mean that you will develop the disease. Being related to a person who DOES have such a gene abnormality doesn't mean that you will have the abnormality. I shouldn't have to be afraid of this because I participated in a study to try to find the causes of breast cancer so that other young women won't have to worry about being sideswiped by this evil in the future.

I shouldn't have to worry that my husband wouldn't find a new job in time for my cancer to be covered.....if we had not been able to continue with our cancer coverage and let it lapse when he was without a job for 2 years, we would have been in deep doo-doo.

Women who are not covered by their own insurance should not have to stay in toxic relationships because they need the insurance.

What other things would you like to see in the Cancer Bill of Rights which the Komen Foundation didn't cover in theirs?

Pains and Pink Outs

2010-10-12T20:44:00.000-07:00

As an update. Last Friday, I went to my general practitioner who ordered chest x-rays on me after pounding on my ribs....which didn't hurt. He is a great doc, who went on-line to look at my views. He called me immediately. While he said he isn't a radiologist, he didn't see anything wrong with my lungs or my ribs, except for a small area on the 10th rib, not in the area where I was experiencing pain. So....we're guessing that this problem is muscular or neurological in nature. It's better, but not gone.

In the meantime, my daughter's school has themes for each week's football game. This week, they are having a "Pink-out" in recognition of breast cancer awareness month. To that end, I was dying her some tie-dyed pink shirts for her and some of her friends to wear.

As I work on these, I keep on hoping that these girls won't have to live through this, that perhaps they will do better at finding a preventative or something for breast cancer.

Sometimes it just isn't easy

2010-10-07T21:21:00.000-07:00

Tuesday, in the afternoon while sitting at the computer, I had one of those sharp, knife like pains on my left side, somewhat like I used to for the first several years after my mastectomy, only this time, the pain didn't go away. It is now a tightness and it hurts when I breathe deeply.

Rats. I took ibuprofen to see if it would work on the muscle. Today, Thursday, I decided I had better call my oncologist and find out if I should see him or my D.O. (my regular doc).

I got my physicians assistant who said that I couldn't get in to see my oncologist until Tuesday. If I couldn't get an earlier appointment with my D.O., then I should call her and she'd book me one then. I asked her to tell me which side was the cancer in my ribs so I could tell my DO with more authority. She said that it was definitely in my left side and probably in my right as well. Darn. I was hoping this was a muscle pull, or verification that I am out of shape.

This is sort of bumming me out....well, that's not quite the word for it, I guess I am concerned. I will say, however, that this whole experience has been different than my earlier two battles. This one, I find myself asking myself all the time whether I should join a group, buy a sewing machine or whatever. I mean, what's the point if I am just going to leave a mess shortly because I'm going to die?

Hmm. Thinking back, I do remember being in "The Fabric Place" in Cromwell, Connecticut asking myself if I should buy any more than a quarter of a yard of fabric because I might not make it. I suppose it is the same, it's just that I've been out so long that I've forgotten all those feelings of fear and uncertainty. I must say, however, I'm not pleased with how fast this is seeming to move.

I was talking to another friend who also has a life-threatening illness. She chided me and told me to stop thinking like that...and again said that those family members who had thought negatively did not have good outcomes. Forgive me, but I find that this is a burden. I can't always push it aside. Not that I dwell always on it, but I am taking steps to make sure that some things are in order....like I'm having a garage sale this weekend and trying to sell some of the fabric which I no longer have an interest in. Like the fabrics I got to make my daughter a little jacket...when she was 7. Gorgeous corduroys, funny cat prints I was going to make her a quilt with, some fabric I was going to make tea caddy's with, other fabrics I was going to make something for my sister out of.....I'm just overwhelmed with the amount of stuff, and it is time to move it on.

Am I being morose? Not really. If I don't die from this, then I'll have a neater, cleaner space. If I do, well, then, I'm not going to be burdening my family with the dreck and dross. But I still find it a little difficult to balance the concept that I will only get better if I don't think I'm going to die. Let's put it this way...I am going to die, I just don't know when, and this "little problem" is scaring the bejabbers out of me, but I'd be a pretty unrealistic person, or at least one who isn't exactly looking at reality if I didn't think that this might be the final battle. Heck, it might be...the final battle for the cancer cells. I just wish that someone would hurry up and get me on something that works.

Cures and treatment

2010-10-04T19:25:00.001-07:00

The other day, I wrote about the argument that my neighbors were having about prevention vs. cure. Quite frankly, I think we need to have both at present because we aren't moving ahead on either front in very swift time. At least that's how it feels to me.

For a long time, I have supported the Susan G. Komen Foundation. When I lived in Connecticut, I ran or walked in every race except for the first year they held it. I raised as much money as I could because I believed in the work that they did.

One of the things that the Komen Foundation does is keeps a significant portion of the money raised in the community, in the community. Much of it goes to provide free mammograms for those who can't afford it. The organization also works hard to educate and serve women in groups who are largely missed, or have higher mortality rates. Breast cancer, for a variety of reasons, is often diagnosed late in the game among African Americans and Latinas and the Komen Foundation is recruiting women from these groups to speak to their "sisters" and help them understand that cancer, if detected early, can be cured, or at least isn't a death sentence.

Currently, the Komen Foundation is working on a petition for elected officials to sign a Breast Cancer Bill of Rights. It is as follows:

Breast Cancer Bill of Rights

Every woman deserves access to timely and affordable high-quality breast health care but not every woman has it. As a breast cancer advocate, I pledge to support the Breast Cancer Bill of Rights and its ten tenets:

EARLY DETECTION: Every woman has a right to access breast cancer screening tools that may save her life.
FINANCIAL STABILITY: Women who are diagnosed with breast cancer have a right to fight the disease without fear of bankruptcy.
ACCESS: Breast cancer patients and survivors have a right to health coverage.
TIMELY CARE: Every woman who has an abnormal mammogram has a right to a diagnosis and treatment, if needed, without delay.
HIGH QUALITY: Every woman has a right to high quality care, no matter where she seeks medical services.
STRONG SAFETY NET: Uninsured women have a right to a strong breast health care safety net.
RECONSTRUCTION: Breast cancer survivors have a right to insurance coverage for full mastectomy care, including reconstruction.
CLINICAL TRIALS: Breast cancer patients who participate in a clinical trial have a right to coverage for routine health care costs.
PATIENT EDUCATION: Every woman has a right to make informed choices and take control of her own health.
INNOVATION: All Americans have a right to a government that invests adequately in innovative cancer research.

I promise to protect our newly acquired rights in the Patient Protections and Affordable Care Act and keep fighting until the entire Breast Cancer Bill of Rights is enshrined in law and extended to all women.

You can sign up for the petition here. Find out more about the Susan G. Komen Foundation here.

Two branches of attack are better than one, and one is better than none.

Prevention

2010-10-02T18:50:00.000-07:00

About a month ago, my husband told me of a deep (and heated) discussion that my two neighbors had gotten into after my husband and one of the neighbors had ridden in the Peletonia, a fund raising bike ride for cancer research. One of the neighbors is the county health commissioner. The other neighbor teaches chemistry and physics at an area high school. The county commissioner felt that less funds should go for cancer research (the the eye toward finding a cure) and more for prevention; whereas the other neighbor wanted research to find a cure.

I was flabbergasted. Prevention? Then I started thinking more about it. Both make absolute sense, and certainly, the health commissioner's viewpoint is absolutely understandable, even if he himself is a prostate cancer survivor.

The Army of Women takes the viewpoint that we have spent billions of dollars trying to cure breast cancer, yet we don't know what causes it. If we discover what causes it, then we can stop it before it starts. Makes sense doesn't it? I'd rather than no one go down the road I've been going on. In addition, if we knew more about what causes it, then doesn't it follow that a cure wouldn't be too far behind?

To that end, the Army of Women connects researchers with study candidates through the internet. Usually, recruitment for people to participate in studies takes years. Through the efforts of the Army of Women, researchers have been able to find their participants in 48 hours. Cool, huh?

The salient points of the Army of Women:

The Love/Avon Army of Women (AOW) is a unique program of the Dr. Susan Love Research Foundation, a 501 (c) 3 non-profit breast cancer research organization. The program is funded through a grant from the Avon Foundation for Women. The AOW provides an opportunity for men and women to take part in breast cancer research studies aimed at determining the causes of breast cancer – and how to prevent it. The AOW is a groundbreaking initiative that connects breast cancer researchers via the internet with women who are willing to participate in a wide variety of research studies. The goal of the Army of Women is to recruit ONE MILLION MEN AND WOMEN of all ages and ethnicities, including breast cancer survivors and those who have never had breast cancer.

Men are able to sign up for the Army of Women.

· Make sure that women know they are signing up to be added to the Army of Women database to hear about research projects – signing up for the Army of Women does NOT sign them up for a study yet.

· The Army of Women Research Studies are prevention based, not clinical trials.

· Participants must be 18 and older – but we need ALL ethnicities – ALL ages, we need healthy women, women with cancer and women who are survivors.

There is no cost. They aren't raising money. Participants can be asked to fill out a questionaire, or to give blood samples (at no cost to them), it all depends on the particular study.

Join at www.army of women.org

Then, invite a friend. I'd rather that we have an Army of people preventing cancer larger than the army of people who have been touched by cancer.....however, I think both are important. Take this step today. I did and I have participated in two of their studies, and I hope that I am eligible for more.

New Place

2010-09-20T19:21:00.000-07:00

Today I went to the new Cancer Care treatment center in Kettering for my monthly Faslodex injection. This facility is occupied by the Dayton Physician's Oncology and Hematology Office, and possibly others. It's my oncologist's new location.

It's far larger than the facility they were in previously. Larger waiting room, larger treatment rooms and more private examination rooms. I arrived at just before 9 am and was amazed at the number of people who were there. It made me think back to all of the treatment rooms I've been in over the last 16+ years. In the 11 years that I was in New Haven, the Hospital of St. Raphael's McGivney Cancer center grew by leaps and bounds too.

Cancer treatment has changed over the years. Instead of being there for long treatments, many patients are treated on an outpatient basis. Like me, some people come only for blood tests and quick injections. The needs have changed.

Of course, when you see large rooms full of people in a cancer center, it can be alarming. However, you have to remember that it doesn't necessarily mean that more people are getting cancer (although I personally think that they are), it does mean that people are living longer with cancer. It is becoming a chronic illness that one can live with.

I was also reminded of how nice and welcoming the people at this facility is versus where I used to go. Same doctor, but the atmosphere and general attitude toward patients, or at least toward this one patient, is entirely different. Once again, I urge you, if you're not happy with something about your treatment, look around....see what you can change. A different office made the whole difference to me.

Finding New Ways In

2010-09-18T21:40:00.000-07:00

Hmm... So in the last week, I have heard of two new possibilities for treatment. It will be interesting to see if I qualify for either one of them....that is to say IF my injections are not working. One of them fools the immune system into working harder on destroying the cancer cells by splicing cancer cells into a virus (interestingly an equine encephalitis virus....so hopefully that doesn't make one into a horses posterior). I guess part of the problem is that the body's defense mechanisms don't recognize that cancer cells are foreign and should be destroyed.

The other method, or so I am told....I didn't read about this one, is using the individual's cancer cells and studying them applying various treatments to find the best one....This sounds extremely expensive as it is an individualized treatment.

Individualized treatments have long been recognized as a method which will provide the best outcomes for the cancer patient, but it is one which takes longer to identify and it is less profitable....it isn't a mass produced treatment (like the current drugs) but specifically designed for each person. We all know that treatments are money driven, so this one will probably not be available for most of us.

Interesting things...Hopefully this or one of the other many treatments developed in the last 5 years will work for me. In the mean time, I get to have another Faslodex treatment on Monday.

To Be or not to Be?

2010-09-06T20:22:00.000-07:00

Sometimes the outpouring from people can be overwhelming. Sometimes what they say can be hard to take.

For instance, one of my husband's relatives called this summer and asked if they could come down and visit in August. I took a deep breath. This summer is a very busy one for me, not just because of the cancer, but because my daughter a high school senior this year and we had to do the college visits, her senior pictures (which she wanted some in my garden), work around taking our yearly trip to Connecticut, and visiting my parents who are ailing.

I was somewhat taken aback as we've lived in Ohio now for 5 years. Only one family member from my husband's side has ever visited. Only a few friends have as this is considered a "fly over state"--why would you ever want to go there? When we visited them in Connecticut, I started to speak to them about their plans on coming down.

"Oh, well, we only wanted to visit you to see you while you were still you. Since you're here, we can wait to come down for Meg's graduation." Translation: we wanted to see you before you died.

Thanks a lot. I was really taken aback. It was an unthinking way of putting it. You might think that, but please don't say that to my face.

On the one hand, I am not sure how I think about it when people say "You're going to make it, I just know you are." Part of me wants to say "how do you know?" On the other hand, wanting to "see me while I am still me" is a little too dark for me.

So...I guess I want it two ways....I want people to recognize that there is a possibility that I won't survive this, but on the other hand, I want them to think positive thoughts for me.

I don't have the faintest clue how this is going to turn out. I do know though that I am not going to sit around. I'm trying to make some good decisions and take care of somethings now in the event that I don't make it....and I have to admit that some of those things will make life much easier even if I do make it.

And yes, I did buy a new quilt pattern and some fabric the other day. I'm not planning to make an exit anytime soon, and I am going to live my life as I have it with as much grace and panache as I can.

Through a Lense Darkly

2010-08-31T21:19:00.000-07:00

I hadn't heard from my oncologist. Usually he calls a week after my blood draw with information on my tumor markers. As of today, he hadn't called, so I called the office.

I was pretty sure they were up. They've been rising with mathematical precision...multiplying exponentially...In June, 98; now, 298. I had been hoping that they had dropped, that the Faslodex and Zometa were working. Nada. The oncologist is on vacation and I'm not due to see him until October. I'm due for another Faslodex injection in a couple of weeks.

I think back...what has changed in the recent past, in the last two years really which would have caused the cancer to come back and so virulently? Sleep? Yes, I've been getting less than I probably should, but what mother of a teenager doesn't? My diet remains good, and in fact, for the entire period of Lent this year, I gave up sugar.

Yes, I'm under a lot of stress. Having a 17 year old daughter doesn't make for the most relaxing of times. I think back too to when I was first diagnosed, and then with the recurrence. I remember begging God to just let me make it long enough for my daughter to be older, and not in so much need of me. Well, 17 would be that....and then I start being disgusted with myself. That kind of thinking is magic thinking....there isn't a higher being out there who is ready to snip the threads of my life just for fun.

It's easy to get into this kind of thinking. For most of us, there is no real known reason as to why recurrences, or even the initial cancer starts. There's nothing really we can do except to live our lives as healthfully as possible.

And don't let our fears and wild imaginations get the best of us.

Everyone's Experience is Different

2010-08-22T13:38:00.000-07:00

Last Friday, I had my monthly Faslodex shot, Zometa IV, and check up. While I was getting my IV, the lady next to me was having trouble with her port. They needed to draw blood as they had accessed her port before doing all the blood tests she needed. The port was being obstinate. Material would flow in, but she couldn't get it to draw back enough to fill a vial.

Now, my port was often a trouble maker. Not really a trouble maker, but it was hard to access and sometimes I had to sing "Up on the Hill was a lonely goatherd...." with the yodeling part from The Sound of Music. It sounds silly, but it worked...and at least I had a decent voice so I could pull it off. This lady wasn't so inclined.

So, they had to stick her again for the blood draw. Is it my favorite thing? No. Is it do-able? Yes, and it is a necessity. I was amazed at how this lady complained and whimpered. You'd think she was having her arm amputated. I know how awful it is when phlebotomist doesn't hit a vein and digs around. But this wasn't the case. I'm also not happy when they put a catheter line in as that doesn't feel too pleasant either. But none of these warranted in my opinion her reaction.

Then, when I was in the room to get the Faslodex, the nurse kept on apologizing for the "stick" she gave me. Really? That is a tiny needle. I'm used to the big mamas they use to draw blood, access my port (when I had one), and put int he IVs. Big. Pokey. These little needles for injections are a piece of cake even though they do put in a lot of material and it is very thick. For me that is.

I was thinking about it and I realized that not everyone can handle pain. I know I have a high tolerance...at least it seems so as I don't complain about much...it has to be really bad before I do. So, I have to remember that others have low tolerances for discomfort.

I really feel sorry for them. I promise I will try not to be judgmental at the yelps and whimpers other people give.

Random thoughts, Random issues

2010-08-18T14:13:00.000-07:00

Daylilies only bloom for a day. Too bad most of us don't think about that earlier in life. Today, my husband and I went to the Miami County Fair, after I had worked in the garden for about three hours.

I didn't think I did all that much...I dug out two perennials, hauled in some soil and back filled around the pond, and planted 4 new perennials. Then, I mulched it.

As far as my normal gardening days go, this was really light. At the fair, we walked around for a couple of hours. By the end of the time, my hip was really hurting. I realized that perhaps I needed to really concentrate on losing weight so that the joint isn't under so much pressure. I also realize that just possibly this pain won't go away over time and I won't be able to be as active as I once was. I don't think I'll ever be able to run again and I don't even think that hiking, something my husband and I used to do before my daughter came along, will be in the picture. Thinking of myself wheelchair bound is just not something I ever considered, not that most people in their pre-30s ever think about something like that.

But, that might not be the case either...even so, it is sobering. It is possible, that if I survive this recent go around, I will just have to be careful. I'm not sure about if the damage or pain I'm having now is directly related to cancer, or if it is as a result of my loss of estrogen at age 38, the calcium issues (loss) from chemo, and the damage to the area from the high-dose radiation. In addition, because it was the acetabelum (the cup in the pelvis which the rounded head of the femur rests in) it is possible that it is just the problems associated with a break in that bone (nerve damage, muscle issues as well as pain because that part bears so much pressure).

I have decided that whenever the hale and hearty male friends of my daughter show up to go swimming, I am going to make each one of them dig me one hole...or do something else which requires putting foot to shovel. One of her friends offered to help me when he found out I had cancer...but never showed up until I messaged him on facebook (I don't think these kids know how to communicate other than texting or facebook) and asked him when and how much. $10 per hour, and three hours of labor I got some of the things done, but I have about 2 hours more of work to do.

I find it amazing that although these kids don't have jobs for the most part, or if they do, they are for a few hours rather than during the daytime, that I can't hire them for a bit of work. Now, I know that this sounds like I am an old fogy, and I suppose I am, but I worked for less than minimum wage when I was their age. I am amazed that making $2.50 per hour OVER minimum wage won't bring them in....and when I say digging, I don't mean hard digging....if it weren't for my hip, I'd do it myself.

I'm about ready to pick up someone who sits out on the highway exit with a "will work for food" sign....if it weren't so scary to do that..... Maybe hanging a "handicapped" sign off the end of my nose, or as a medallion on my neck might do. At present, people don't know there is anything wrong with me....My daughter suggested that I get an handicapped license. I would, but I don't need it ALL the time...just more than I'd like to admit. It is nice that she thinks about where I'm parking and how I hobble at the end of the college campus visits we make. Oh well, at least I'm still taking in breaths. ; )

Why I blog

2010-08-12T21:06:00.001-07:00

Not too long ago, I received a comment on this blog asking me to fill out a survey about breast cancer blogs. Being the sort of person I am, of course I went and completed it.

One of the things which struck me, however, was the apparent supposition that the person who blogs about breast cancer is to illicit support, inform people of their own particular current issue, that sort of thing. I didn't see anything coming through the questions as far as the reason I chose to blog.

I started this blog because I knew of very few people who had had Stage IV breast cancer and survived, and I don't know anyone who has had it and been around as long as I have. That's not to say that they aren't out there, I just don't know of any.

I also wanted to give people hope, especially for those who have been recently diagnosed. Of course, there are those who follow this because they do know me or that they know of someone else who has been in similar circumstances.

Since being diagnosed with my own recurrence, I have often hesitated to post about my current struggle. I just didn't want anyone to get depressed that I am now going through this too. I still struggle with that...but I also see this as an opportunity to tell about how the drugs are working on me, and some of the things I have found out as once again, I'm going into an area where I don't know of anyone who has been in similar circumstances to me.

So...I'll continue...until I think that I don't have anything pertinent to share, or it just becomes too hard. Rest assured, if you don't hear from me for a while it is probably that the job of raising a teenager, keeping a household running, maintaining my own business, gardening, and all the other things I do have been interfering with the blog. :)

Sometimes doing the right thing leaves you exposed

2010-08-07T21:42:00.001-07:00

I've written before about the Army of Women posting a research study for young women who were diagnosed with breast cancer. You had to have been under 40 and pre-menopausal. This was one of the first studies that I have ever qualified for, and something I really wanted to participate in.

I was especially interested as there had been no breast cancer (or cancer of any type) in my family up until me, and then my sister who is 7 years my senior was diagnosed with it about 5 years after I was. I want new information to come out and hopefully treatments/preventative measures so that my two nieces and my own daughter don't have to go through what I have.

I also thought it would be good as my mother and father are both living and both are in their 80s. The combination of my sister and my parents just might give some insight into why this happened.

I filled out the permission forms and the history and had blood drawn and sent off to Washington University in St. Louis. It was not without some trepidation that I filled those papers out. You see, there isn't anything to protect me or my daughter from having insurance companies in the future deny her treatment based on genetic testing information which might show her to have some sort of gene abnormality which would make her at risk for getting this disease.

I find this a travesty. I didn't like it, and I know I am putting her future at risk, but I feel that I'm putting her future at risk if I don't step up to the plate and participate. We should be protected. No one should have this being held over their head, particularly if one is being penalized for doing something for the greater good.

In addition, even with a positive genetic factor, it doesn't mean that a person who has a gene abnormality which is connected with cancer has a 100% chance of developing the disease. For some unknown reason, sometimes these "triggers" are not tripped. But I certainly want to put a bullet in this disease. I guess I'm going to have to write my congressmen, but I feel like it won't go any where.

Not Every Cloud Brings Rain

2010-07-31T19:40:00.000-07:00

Imagine that there is a watermark on this picture....for some reason I'm having trouble with Photoshop getting the watermark to stay. grrr.

This week has been a little tough. Not only have I been having pain in my hip, but yesterday I started to have some discomfort in my ribs as well. Toss in the fact that I also discovered that I have Lyme disease (and am now on antibiotics but feel tired and often dizzy), its been a little rough.

Usually, I keep my head about things, but the rib thing really made me a little nervous. Since I couldn't remember how much calcium and vitamin D I'm supposed to be taking (I finished the bottle and threw it out and then talked to my sister who is taking LOTS of both) I decided it was time to call my oncologist and ask him about the dosage and also to give him the heads up that I was feeling something in my ribs....which is one of the locations of the new metastases. I figured that would give him some time to think about what to do next if the Faslodex wasn't working.

He called me back within a couple of hours. and told me that for some reason, even if Faslodex is working it doesn't usually show up right away. He said that he new of cases where they had discontinued the drug, and then two months later they saw improvement. He also said that he has had very good results with his patients on this drug and didn't have any bad cases to report, but that he had several patients who had been on it for 6 years and were still doing well.

Ok...so why don't we know about these things? I think part of it may be that quite often what reporters and the media are looking for are cures. What Faslodex does isn't curing cancer, but making it be a chronic illness. Just another case of keeping us patched together until we can find something better.

I'll take it. And I'm very grateful I have a doctor who is willing to listen to me and to give me encouragement even when things look rather dismal. I'm not usually one to jump to conclusions. I'm also not one to always look totally on the dark side. However, since I have only known this doctor for 4 years, I never know how his office perceives me.

The Tattooed Lady and other laughs

2010-07-22T20:43:00.001-07:00

The road for the cancer survivor is often long and bumpy. However, it isn't without giggles...at least if you look for them. Today, I actually experienced a new giggle.

Every year, I try to go and get a full body check for cancer by a dermatologist. I decided that I would switch to the local guy my daughter has been seeing.

When I received radiation therapy to my breast when I had my first bout with breast cancer, I was tattooed, 4 (or 6, I can't remember) little black dots were put on my breast in order to mark the coordinates for the radiation beam. (I asked them for a mermaid, but they said no, that was a little over the top. Darn.). Ordinarily I don't think too much about them. In fact, when I had my mastectomy, some of them were removed with the breast, but I still have two small dots.

When I was at the dermatologists for my first exam with him today, he looked at me and said "What's with the tattoos?" Uhhh...well, you see, I was going to get a mermaid, but I chickened out after a couple of dots...." Yes, I really did say that...but I followed with the real explanation.

I told my daughter when I got home about the exchange. Her eyes grew very wide.."You have a tattoo???" she asked incredulously.... I told her yes, but they were top secret dots. For a moment, she almost thought she had a really cool mom, but then I had to go and spoil it for her and prove once again that I'm not cool, just an aging nerd.

Preparing for Surgery and Axillary Dissections

2010-07-18T19:23:00.001-07:00

NiddyNoddy's comment on my last post made me think back to the first time I had breast cancer surgery in 1994. While I had listened carefully to the surgeon's information, after surgery I was confronted with a lot of new experiences and situations with which I could have been far better prepared.

As I mentioned in my comment to her, one of the biggest embarrassments I had was that I didn't have any button down shirts to wear after the surgery. I am a turtle neck with sweater in the winter and polo shirt in the summer sort of person. After having an axillary dissection (where they remove lymph nodes from under your arm), you are fitted with a drain to carry away the fluid under your arm. This extra apparatus doesn't fit too well under a turtle neck....but the biggest issue is that you can't raise your arm. A button down shirt is imperative. I actually had to borrow some from friends and relations.

The drain is important, and must be kept flowing well. Be very clear on how to flush it and make sure that nothing plugs it up. I had a slight plug the first time around.

As soon as the doctor gives you the go-ahead, start doing the exercises. Make sure you ask about when and what to do. They are simple (wall climbing with your fingers being one) , but the tendency is to treat the affected arm like a broken wing. Failure to move that arm may cause permanent restriction in the movement of the arm. I firmly believe that the reason I don't have any issue is that I HAD to get moving...caring for a 15 month old baby MADE me move and take care of myself.

Be aware that for the recuperation period you will not be able to lift ANYTHING....even weighing as little as 2 pounds. Make arrangements or think about how this is going to impact you.

More importantly, if you have had lymph nodes removed, then your lymphatic system is disrupted. Fluids may build up in your arm and you are more susceptable to infection. Silly things like insect bites or pulls can bring on lymphedema, a swelling of the arm which can be painful as well as dangerous. My sister developed it after the dog pulled hard on the leash while walking. I am very lax in watching what I do, but it is something I should be aware of.

For the same reason, you can't have blood drawn from the affected arm, you shouldn't have blood pressure taken on that arm and you should avoid all types of "sticks" (i.e. needles of any sorts) in that arm. Only under duress should that be done. Medical bracelets with this information should be worn to protect yourself... for the rest of your life.

I strongly suggest that you take advantage of the programs provided to breast cancer survivors by the American Cancer Society. They can send a volunteer out to talk to you about what to expect, what your concerns are, etc. The volunteers are all trained and all have gone through the same thing that you are looking at now. The major program is "Reach to Recovery." In addition, they often sponsor breast cancer support groups. While many people react to the support groups as not being necessarily because "I know x,y, and z who have gone through it, " the advantage in going to a group such as this is that you can hear all of them discussing things at once. In addition, the larger the number of individuals will give you a broader experience. Believe me, while there are times of tears at such groups, there are plenty of laughs as well. My Meriden/Wallingford, CT group was called "The Bosom Buddies" and let me tell you, they were a great bunch of ladies who gave me great advice.

Do not panic if months after your surgery you have pains, often searing, in the area. These are generally nerves regenerating or just doing funky things. While it is worthwhile to mention this to your doctor, it doesn't necessarily mean that you are having a problem. Even 13 years after my last surgery, I sometimes have the searing pain. It comes, then goes quickly...but leaving me a little breathless. The nerves and scar tissue are really odd that way.

Living with cancer is different. Sometimes it seems like a long, steep upward climb...but the sight at the end of the staircase is wonderful.

Bottoms up! Faslodex

2010-07-16T20:09:00.001-07:00

The new regimen of treatment for me is Faslodex injections once a month and Zometa IVs once every three months. Last month I had my "loading dose" of Faslodex (fulvestrant).

Faslodex is an injection which is used to treat cancer in hormone receptor positive women who have not responded to (or have had their case worsen) with other treatments, such as tamoxifen, or in my case, Arimidex. Faslodex is an estrogen receptor antagonist which prevents the cancer from being able to use the body's hormones to grow. It is only used in menopausal women and is NOT chemotherapy.

It is administered as an injection in the "buttocks" as the material so nicely describes it. There are very few side effects, other than packing a substantial whallop to your wallet. Well...relatively minor ones. The most common is an "injection site reaction."

Last month, I received a "loading dose" (basically twice the dose I will normally have), one shot in each "cheek" so to speak. The needles were a pleasure after getting used to the chemotherapy needles I have been using for so long. What did amaze me is the size and variation in color of the bruise which I had by the time I went to bed. Imagine yellows, to magenta, to dark "blue"....all in one fairly large spot. The spot was also hard and warm to the touch for about 10 days. The second week, I could still feel the lump but by then, the swelling had gone down and the area well...itched. Not exactly a ladylike spot to relieve the sensation.

Today, I got my second dose. When I went in, the nurse had two syringes ready....TWO? I asked about this because it was my second dose, and I thought I was done with the loading doses. She had wondered the same thing and had asked my oncologist before she came into the room with me. So, she decided it was worth asking again as I had understood that I was only getting one shot today.

She came back saying that recent information indicated that the "loading dose" should be administered for a longer period to have the greatest amount of efficacy. This news made me feel really great. Why? Well, it indicated that my doc keeps up on the latest information. Cancer treatment is changing....and rapidly. I'm grateful that I have someone who keeps up on what might be best for me.

I said something to the nurse about hoping this will work...her comment was that lots of people have lived a long time with good results on this drug. I'm just hoping I'm one of them.

Zometa part II (zoledronic acid)

2010-06-21T20:17:00.000-07:00

I've now had my second dose of Zometa. I'm happy to report that the drug seems to work just like they said. While I had extreme fatigue with the first dose, I didn't have the same symptoms this time. According to the manufacturer's information, it usually only causes heavy fatigue in the first dose.

My doctor has me on it once every three months. I queried him on this as my "warrior" individual says I should have it monthly to fight it more! It also seemed like most of the information I found on it was that it was given monthly. In fact, I received my first dose when my doctor was on vacation. The nurses automatically put me done for a monthly shot, but I told them I was fairly sure that he wanted me to have it only once every three months.

When I was able to discuss this with him, he told me that he doesn't usually prescribe this for monthly unless I have extreme pain or in cases of multiple myeloma. He said that current studies indicate that having it more frequently doesn't ensure a more favorable result, and it does carry greater risk of negative side effects such as kidney failure and Osteonecrosis of the jaw. Frankly, I'd rather not have these side effects.

It's difficult to explain what Zometa is to my family and friends. Since it is given in 15 minute IV drips, everyone assumes that it is chemotherapy. It isn't. It is a bisphosphonate, and is the same compound as Reclast, for those who may be familiar with that from all the direct advertising.

They don't know quite how it works, but it does work well for some patients. I just hope I'm one of them.

Sometimes you just want to scream

2010-06-07T19:52:00.000-07:00

Sometimes people want to help. Sometimes you just want to pop them in the nose. A week and a half ago, I realized that shoveling was getting difficult for me. I worked in the garden moving plants and shrubs several days in a row and my pelvis (at the joint between the femur and the pelvis) was aching severely.

I realized that this is the area which has been recently diagnosed with cancer more severe than in other places....and yet I also know that this is the same area which was fractured in the fall. It is my right leg. Surprisingly, because I'm left handed, this is the foot I put on the shovel, the one which carries the power.

I thought maybe, if I just used my left leg instead....I'm pretty ambidextrous in most things...only I felt like I was a clown wearing big shoes when I tried. I sulked. I mentioned to my neighbors that this was getting hard. I'm also getting a little concerned that I won't be able to keep this up.

I also know that my gardens are too full of plants as I love plants. I need to make divisions, send some things on to someone else that I don't particularly like after all....or whatever. So, I emailed my quilty friends that I needed to simplify my gardens as I won't be able to work on them like I have...at least for a while. . .

A couple of days later, one of my neighbors came running over. "Lisa! Lisa! I've solved your problem!!!" "Problem?" I thought.... "I talked to the woman who does my gardening for me. She's a member of the Hosta Society!!!! They'll come and dig up all your hostas, haul them away and even PAY you for them."

My jaw dropped open.

If you take a look at my other blog, you'll see how important my gardens are to me. Most of my hostas were brought down from Connecticut where I had over 100 different varieties. I had to keep on saying to myself "She means well." I had to make sure I didn't say "BUT I'M NOT DEAD YET! I'M STILL ENJOYING THEM!!!!" I was really dumbfounded that anyone would make such a suggestion to me with as much enthusiasm as this particular neighbor.

It will be a cold day in hell before I have the Hosta Society come in...at least while I'm still alive. If anyone digs up all my gardens and takes them away....it will be at a garden party at a time of my choosing, when the end seems near. I'll call in all my friends and ask them to bring friends who garden. They may come...have good food and drink, then take home what they want, leaving a more reasonable garden for Carlos to enjoy...especially since he doesn't garden or understand.

On the other hand...I put out to the local quilt guild and some of my other quilty friends that I have plants to share and plants to give away as I can't do this like this any more. Instead of coming to destroy my gardens, I've had three days of people coming to help me take out things which I point them to, weed and move things around to better locations. They've taken home things that I have pressed on them, not that they hovered over like vultures. What a more caring way to deal with this. I am enjoying working with everyone and I think they are getting something too, in addition to plants. Much to my amazement, the guild has offered to come and help me on a weekly schedule throughout the summer. Hopefully, I'll get the mulch down and everything and we won't have such a mess as I do now...but what a sweet and thoughtful thing to do.

My hip doesn't hurt so much, I've found, if I don't press my luck and go for several days in a row.

On another odd note.... On Sunday, May 30, I fell at Bruckner Nature Center while taking photographs. I stepped on a steep path and there were little twigs which caused my foot to roll...and fell on the side which I was holding the camera. I turn my wrist to protect the camera and heard a snap as I hit it. I have an occult fracture of the radius...and after three days in a splint, the orthopedist took it off and told me to use it, but if it hurt, don't do that particular motion. This would help maintain motion in this joint.

Now the thing I find interesting is this: In 1997, I stepped off a curb and rolled my foot, causing a torsion fracture. Two weeks later, I was diagnosed with a recurrence of breast cancer which I later found out to be stage IV. What a strange co-incidence that two weeks ago I discovered I had some more lesions (shoulder, ribs, sternum, pelvis) and then I broke another bone.

Anyway....

Cures for the Wealthy?

2010-05-25T22:02:00.001-07:00

Earlier this month, the news was full of a new treatment was approved by the FDA which had been developed for late-stage prostate cancer. In this treatment, white blood cells were removed from the patient's body and treated with protein fragments from the cancer cells. This stimulated the immune response of the body.

This seems to me, at least on the surface, to be a great break through as I feel that the key to battling cancer is to look at the individual's immune response. After all, these are our individual cells which have run amok. Granted, I'm not a scientist, nor to I play one on T.V., but it just seems logical.

What doesn't seem logical though is that one of the reports I heard about this said that it was extremely expensive as it isn't mass-produced and that it takes a fairly long time in order to do it. Does this mean that if this IS the way to treat cancer that only the wealthy will be able to take advantage of it? Even now, it is a bit maddening to know that there are lots of adjuvant therapies which I could do, if I was willing or able to shell out the extra money to do it. In this case, I mean therapies which are not necessarily proven to stem the tide, but seem to have positive effects, such as qi gong, additional health suppliements, and other non-traditional therapies.

The other maddening thing is that this treatment only resulted in an additional four months of longevity in the study group. If I were part of this group, I would sure as heck want more than just an additional four months....In other words..once again, we are just not getting the full picture.

How do you tell your mother?

2010-05-23T20:47:00.000-07:00

I know I've talked about this before....but I finally had to bite the bullet. This last Thursday I got the word that I have multiple bone metastases ...shoulder, sternum, ribs, vertebrae and another on the pelvis.

My mother will be 80 soon, and my dad is 88. My mom has severe back trouble now and is in a lot of pain, and my dad has congestive heart failure and is just fading away. Both of them are of very good mental state.

But I dreaded this. How do you tell your mom and dad who have their own health issues that their youngest child is once again in the trenches fighting cancer?

I know I have lived with this for a long time, but even so, I don't want them to worry a lot, and I don't want them to go through the anguish of watching me with this disease. It's hard when something like this happens.

My husbands family has a habit of sweeping things under the rug. I tease them that the family motto is "Diga Nadie" ---"tell no one." This is kind of a laugh as usually when this phrase is used, the teller has already told everyone and you find out later that you've been keeping this secret that everyone knows. Secretos. Secrets. Lots of them. This is not the way I was raised.

I feel that I owe my family the right to hear significant news from MY mouth so I can answer questions. It didn't make it any easier. But I think I made it better for my mom. She still said she was going to be "down on her knees" (praying). That's OK. Still, I wish I didn't have to deliver such news. Meeting it head on is always the best policy. What I can conjure up in my head is usually worse than whatever anyone has to tell me....and I feel that I owe it to everyone to lay it out. The good, the bad and the cancerous.

Same Song, same refrain

2010-05-20T19:49:00.000-07:00

Yesterday's P.E.T. went fine. Well, lets put it this way. Although the technician DID try to find the vein in the center of my arm, and failed as no one has ever been able to get that one, he was able to access the old faithful vein in my wrist. I assure you, it is far more painful there, but when your veins are as bad as mine, you take what you can get.

Today, however, my oncologist called. Not a good sign when your doc calls you the day after you've had the test. Indeed, the suspicious lesion on my pelvis (the acetabulum) has gotten bigger. In addition, since my last P.E.T. in late September, there are new lesions on my sternum, shoulder, ribs and vertebrae. Given the rise in my tumor markers, this doesn't surprise me.

Was I hoping for a negative finding? Of course. Is my prognosis completely black? No. According to my doc, there have been a number of new drugs developed which might help and give me many more years. In addition, a number of new chemotherapies have been coming on the market which are good or have been very promising.

One of the things which surprises me the most is my reaction to all of this. No tears. I'm not even really upset. I think that is because I know at present that while death stalks me, it is not any more imminent than it was yesterday. I handled all of the struggle with coming to terms with my death when I was told I had stage IV cancer 13 years ago.

Earlier this month, I went to the funeral of an old family friend, Margaret Norton. When we lived in Bronson, we did lots of things with the Norton family. The oldest son, who was a couple of years older than my brother, married a woman who died of breast cancer in 2006. As she was dying, she said to Margaret, her mother-in-law, that she regretted not being able to live to a great age and to be a woman like Margaret. I can understand this completely. As a child, and then later as a young woman, I always thought of myself as growing old. Maybe I still will, although the likely hood of that seems more remote as I continue down this journey. I think I'm OK with that.

I do know that when I had cancer first in 1994 when my daughter was 15 months old, I prayed to be able to live until she was older. Then again, just 4 years later, I was praying the same thing. I still would like to be around to see her graduate from college. I certainly am most concerned as to the impact this will have on her life as I feel that things for a teenager and young adult are still a bit tenuous and mom is still needed even if there are maelstroms in between times. I want her to be able to face things without thinking about me or worrying about me.

Tonight, when I told her, she cried a little, and snuffled something about how she was nasty to me....but I think she'll be ok. We'll get through this. Even though the tree seems to be a bit barren, it has budded out now, and leaves will come and go and come again. Whether I fall like those leaves now, or years from now is rather immaterial. I have no control over that. I can just as easily have been killed by the idiot on 571 today who pulled out in front of me as not. I can live with cancer a few or many more years....I have no control over that. I can enjoy tomorrow for what it is...and the next day after that...and the day after that? We'll see. One step at a time. One moment in time.

PETs

2010-05-18T19:26:00.000-07:00

Drats. Last Wednesday, my teenager had a tonsilectomy. She's done really well, but for the last two days has been complaining of a "swollen tongue." As my husband is allergic to penicillin, this was a little alarming. Plus, she's milking her recovery period for all she can get.

She's done well, and it is really less traumatic than most would be, but because of this, and other things I have on my mind (like getting the garden together, trying to sort out the house, keeping up with my book business, and finish quilts for shows) one major piece just slipped my mind.

Tomorrow, I will have a P.E.T. scan. P.E.T. stands for Positron Emission Tomography. A fancy way of saying they are going to map what is happening inside my body. It is a nuclear medicine method of seeing in three dimensions. Tomorrow, I will go in and have a radioactive form of glucose injected. After about an hour of sitting and doing NOTHING (not even reading which is a great hardship to me) I will go in and be scanned by laying on a movable bed which passed through a scanner. The glucose will be taken up more readily in areas of higher activity...such as in cancerous areas since cancer has a higher metabolic rate than other areas. Areas of healing, and other things can also be picked up.... Basically, as the radioactive particle decays, it gives off a positron...usually this involves gamma rays (and no, I'm not a Man in the Moon Marigold for anyone who remembers that book).

In order to prepare for this, you cannot do any strenuous work (well, it was a good thing I had to take the teen to the doctors today to figure out the tongue or I would have been digging and weeding the garden), shouldn't drink any caffeine for 24 hours, limit the consumption of sugars and carbohydrates (oops, I really blew that one, not so much for the sugar but most of my food today was high in carbs), and I cannot eat for 6 hours previous to the test (check, that one at least I can do).

I'm not looking forward to this. Not because I'm afraid of the results, or because I have problems with the radioactivity (hey, for a little bit I can glow), but because I don't really want to give up the time it takes. Pretty silly. I do think that they won't see anything with this....or maybe they will see old damage. Who knows? This is one more step in trying to figure out what is going on. We'll also see more when I have my blood tested next month for the tumor markers. Lets just see if this godawful expensive medication and infusion treatment I'm on is doing anything which we can positively see.

Don't be Chicken! Participate!!!!

2010-05-11T20:14:00.000-07:00

One of the websites I ran across a while ago is Dr. Susan Love's Army of Women. Now part of me balks at the title of this, as men get breast cancer too, but I do understand why this is the name.

One of the things that this website does is that it gathers volunteers for various research studies. Often, I don't qualify, but recently a study came across my email in-box which I did qualify for and which I feel passionately about. This is a study of women who developed breast cancer before the age of 40.

You don't have to be currently in treatment. You can be out of treatment for many years, like me. You can have recurrences, like me. I can't remember if it also calls for siblings and mothers of young breast cancer survivors or not... It does mean that you have to get some blood tests done.

To me, thats a small enough price to pay. When I look back, I shudder at the fact that I have spent more of my adult years fighting breast cancer than being healthy. I cringe at the fact that my daughter doesn't remember a mom who wasn't battling and that my husband only had three and a half years of marriage to a woman who wasn't ill, recovering or living under the shadow....I want the researchers to find out as much as they can so that others don't have to go through this.

Don't be chicken. Please, join the Army of Women. If something comes along that you can participate in, do. With this we might more quickly find a cure.

Frightened or paranoid...I'm not sure which

2010-04-26T09:32:00.001-07:00

Breast cancer survivors should be angry....very angry, and the general populace should be very scared. Last Friday, word came out that Wellpoint was discontinuing coverage, or limiting coverage for breast cancer survivors/patients. Since I haven't heard anything else about it, I wondering what the word is...or has the insurance industry squelched it....or are people too ready to throw it into the "so what? I don't have this particular problem.

We all know that insurance companies are out there to make money. The house is stacked in their favor. We also know that when something becomes unprofitable for them, they try to wiggle out of it. So, one of my questions is why did they choose breast cancer over all the other expensive illnesses? Is it because there are now more of us (even though some entities say it isn't on the rise)? Or is it because women are more expendable? Yes...it does sound like I'm becoming paranoid.

I admit it....on Saturday, our answering machine picked up a robo-call from our health insurer....requesting me to call them "at my earliest convenience." When I called this morning, I got a computerized information session, warning me that I should be screened for breast, colon, and cervical cancers...well, DUH! They should know that I had my first colonoscopy in October, and that I am screened every year for breast cancer (i.e. mammogram, every six months for a P.E.T. scan) and that I have no cervix thanks to the prophylactic oophrectomy/complete hysterectomy I had when I was diagnosed with stage 4 progesterone positive breast cancer.

The robot asked me if I wanted more information. No. Why should I? I must admit I was hesitant to press the "no" response....Would that mean that they would throw me into a bin as un-cooperative? or would it flag me for other problems???? Why, after being covered by this same insurance for 4 years, is this popping up now????

So..yes...I'm hesitant...and afraid....The health care/insurance house of cards is shaky....and I'm afraid it is going to come crashing down around my ears.