Monday, September 21, 2015

Seventh cancerversary reflections

Reflection of a beautiful sunset last night

Another cancer anniversary come and gone. I had forgotten it but someone on the
TNBC page posted that she was just diagnosed with her 3rd recurrence on her 7th
cancerversary and it was about the same date as mine. She was one of the victims
 of Dr. Fata, a local physician who bilked insurance companies and Medicare of
millions of dollars treating people who did not have cancer for cancer and
undertreating others through sheer incompetence and greed which contributed to
her many bouts of cancer as the first appearance was not treated correctly.
This is my post on my second anniversary. Most of this is still apt though I have
 since graduated from seeing the oncologist.
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 the
y 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 i
n 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.

1 comment:

Elephant's Child said...

Love that sky.
Hoping that you clock up many, many more cancerversaries - and that you are able to forget the date.
Well meaning people can say some hurtful things can't they?


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