Saturday, December 31, 2011


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'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 like theirs.  One which would allow me to run 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?

Friday, December 23, 2011

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.

Tuesday, December 20, 2011

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.

Friday, December 16, 2011

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.

Another is 

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.

Monday, December 12, 2011

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 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 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?

Saturday, December 3, 2011

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 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.