Wednesday, September 8, 2010

Happy cancerversary!

Cancer is odd and for me it is not what ‘someone else’ deals with and until you (your spouse, child, parent) have it you truly do not understand the magnitude of the diagnosis. How the world/your world will stop and struggle to start going again. The usual statements “I know so and so who had it and they are fine”, “I will pray for you”, “You are young or strong or maybe both don’t worry”, “Modern medicine is so advanced aren’t you lucky”… sometimes cut like a knife or become flotation devices in a stagnant pool of pain. They don’t make you feel better – they often make you angry – annoyed – frustrated – you may even wonder how these people could actually think they are helping. But it is in this that you /we /I need to realize they are as lost in dealing with this and just want to offer whatever measure of hope, faith or love they can at a time when much of this is lost.

From diary of a mad white cancer patient

It was two years today that a routine mammogram detected my tumor. Even though there is a huge false positive rate, I knew. I knew an hour before I had the first set of scans..followed by more...then more..then more. Finally an ultrasound and a meeting with the  previously hidden radiologist, a woman with absolutely no social skills who sighed impatiently at all my questions. How did I know? I had no symptoms. I had a 'false' positive in the past and they had watched the suspicious area very closely for years but this was in a different area. I felt a chill, a feeling that no..this will not be good and I am not immortal. I felt this same chill recently concerning an entirely different matter and I was right again.
Yeah I am Suzie Scientist governed by logic, not hunches or chills of insight. Usually.
 I tell newbies who find themselves suddenly in Cancerland that the worst that they will feel is in the beginning: the terror of the unknown, all the what-ifs..the main what-if being Am I going to die? The world continues to revolve around despite you. Things need to be done. The mind spins uselessly around with what did I do to deserve this? I get my answer the first day of chemo when I am in the bed right next to the pediatric unit: maybe I may be deserving of cancer but these children are not.
In general I received good care from the best of the 3 arms of the triathlon I had to complete: Slash! Poison!Burn! I read and question constantly. There are a few aspects of my care (and of my cohorts in this battle) that I think is deficient. There are some myths about cancer that the powers that be (probably more legal than medical)continue to parrot:
Belief in this justifies delaying treatment. A few months here or there shouldn't hurt, right? Well in the month between detection and surgery, the tumor doubled in size and also a new tumor appeared. I went from Stage 1 to Stage 2. My prognosis worsened considerably. The biopsy showed that I had a very aggressive subtype..why didn't things move faster?
More than half of the people in cancerland I encounter, in person or in blogsphere, report pain. Some delayed treatment because their lesion hurt so it couldn't be cancer, right? Wrong. After I was diagnosed, I did notice an itchy feeling, a very mild pain. Was I feeling this before? I don't know. I have, as most women in their fifties, minor aches all the time.
I received the current standard of care for my particular subtype of cancer. What this is very slowly evolves. Thirty years ago, standard care regardless of the subtype of cancer, even if it was in situ, was a radical mastectomy. Then it was if the tumor was below a certain size and no nodal involement, a lumpdectomy followed by radiation. Chemo is now recommended for large tumors or ones having a high grade, such as mine. Even though it did not appear in the nodes, there was a 50% chance that it spread through my blood stream. Chemo would reduce the chances of a distal recurrence to 25%. The median time for a distal recurrence to be detected is 18 months. It is now 24 months. What are my chances? Are they now halved? Aspirin, in a very uncontrolled study, reduced chances of recurrence to 50%. Is it going to reduce my chances too? I hope. Is Adriamycin truly useful for TNBC? The jury is out. Should I have been on Carboplatin instead? Maybe. Did I take a big risk on insisting on the 3 week Canadian study of radiation which was not studied in TNBC. They gave me higher rads in a shorter period of time. Maybe this will be found superior to TNBC.
I felt miserable during chemo but I know I got off lightly. I didn't need to be hospitalized. I was able to watch Naomi play bball. I was able to exercise though not at such a high level as before. My mind went into all sorts of dark places.Four months of being poisoned is a long time and it was hard that it occurred in the winter when I am not the happiest camper anyway.  Sometimes I felt forsaken when I wasn't. But in general, people came through for me especially Steve.
Did I learn any big lessons? I know I should have learned not to sweat the small stuff but I still do.
Part of me still has cancer on the radar screen but it is a very small part. I am supposed to show up there every 3 months to be monitored. What does this consist of? Asking how I feel and then checking for a local recurrence and then me paying $150 that is not reimbursed. I didn't show up last month. I will go for the mammogram however.
There is plenty of other things to worry about. I was just informed that there are some flies in the ointment with our condo purchase. Maybe they will go away, they should. Legally we are covered but...

1 comment:

Teri Bernstein said...

sue--thank you for getting so "down to specifics" in this post. It is a happy anniversary because: no mets.
You are in a totally different place. Let's hope the cancer sees that, too.
To life....


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