Saturday, December 31, 2011

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?

5 comments:

  1. This was a really poignant and thoughtful post, Lisa. Having those cheery glossed up (though you know the bad or awkward stuff doesn't make it) greetings flutter in at holiday time can be tough reminders of the athletic pursuits or whatever you would have preferred to b/c worry and treatments.

    Or more fundamentally, as I saw mentioned on another b/c survivor's blog (Katherine Russell Rich): "All I wanted was ordinary life back, for ordinary life, it became utterly clear, is more valuable than anything else."

    I know your "ordinary life" used to have lots of things like hard work digging in the garden and bike rides. I hope the next treatment brings you back closer to those sorts of activities. I know your hard won wisdom and grace will remain no matter what though.

    And lastly, did that "holiday busy" nurse not have a CLUE how important your blood draw is? Anyone working in her position should be able to immediately understand when time is really of the essence, respond quickly - especially to a reasonable request politely voiced - , and do everything possible to swiftly fulfill your simple request. ASAP.
    xxx
    Jean Z

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  2. Hi, I am in a similar position waiting to find out if my latest AI has stopped working after a rise in markers and if I need to go on to chemo. The waiting is tough and the only consolation for me is getting a bit more time on an 'easy' treatment. Really hope that the tamoxifen is working for you - pain is not always indicative of progression for me although of course it can be.

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  3. HUGS, gently. I'm not in your shoes or can say for certain that I know how you feel, Lisa (Michigoose), but my heart goes out to you and for you.

    During my practicum, for my Medical Assistant Program, I worked in an Oncology practice. The nursing, and Medical Assistant staff treated their patients with compassion and understanding. Never heard an unkind or impatient word from any of them. I'm so sorry you were treated the way you were. I hope you get the blood draw and test quickly!!!!

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  4. Surviving cancer is not an easy thing. I hope God gives you all power to face the pain.
    My wishes and prayers for you always.

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  5. When you have a course of action available to you and you aren't allowed to take it, it can be very frustrating and demoralizing. Stick to your guns, advocate for yourself (as you so ably do), but try to stay hopeful.

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