Frustrations

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

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

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

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.....

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

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

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

 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

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?

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

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!

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?

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

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

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

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

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

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

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

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

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

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

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

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

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!

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

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

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

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

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

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!