Friday, May 29, 2009

Cancerland memories

It's been more than 5 weeks now since I've been out of treatment and almost 9 months since I have entered Cancerland. I've blogged faithfully but much of time has been a blur to me. I do have a few distinct memories however.

1) The feeling of dread right before my mammogram appt. I suddenly had the realization that up to that point of time, I'd been lucky but I knew I was about to find out that I'm not immortal. I had no symptoms nor could I feel the lump (hopefully soft lumps have better prognoses than hard ones-I've read accounts of them 'softening" as they disappear) but I was not surprised when I was told that I probably had cancer.

2) The bitchiness of the radiologist who told me about my tumor. It was late in the day and I was a chore to deal with. Every question I asked exasperated her as how could I be so stupid. She has the suckiest bedside manner bar none. With her was a resident she was training. You'd think she'd have better behavior. I wish I remembered her name. All I remember is her bad perm and even worse attitude. I know it is mean to wish cancer on anyone but she'd be my top candidate to get it and I would want her to find out with the physician sighing the whole time as she receives such devastating news.

3) The paper punch sound of the gun extracting little pieces of vermicelli from my breast. The biopsied pieces looked like strings of fat-benign. But a few days later, I find out their true evil-Grade 3-the worse grade given due to a combination of fast growth and cells undifferentiated.

4) Finding out the tumor was triple negative. I had just assumed I'd have my mom's cancer. (ER+, non-aggressive) Chemo for sure. Instead of a 3 month ordeal, I was in for at least 7 months.

5) Reading about TNBC on the internet. Reading things like no targetted treatment-very poor prognosis, etc. Ended up thinking that instead of a few months of inconvenience, I was in a battle for my life that I didn't think I could win. I was filled with dispair. People's empty promises of 'everything was going to be all right' just made me lonelier.

6) Peeing bright blue from the sentinel node dye. The sentinel node procedure really has saved women a lot of misery. They take out 1-3 nodes instead of the whole bunch (usually around 20)so I would be spared lymphedema. And the nodes were clean-good news but the rogue cells could still travel in the blood stream to spread 50% of the time with a tumor my size and grade. My regimen of chemo would kill them 50% of the time leaving me with an overall 70% chance of survival (could be killed by cancer in the next 10 years 25%, by some other means 5%)
I later find out that the database used to generate these sad numbers isn't perfect and my numbers should be better. Still scary. Even being told that you have a 95% chance of surviving means that in 1 in 20 cases, you lose.

7) Trying to run after my surgery without damaging my breast. I actually ran holding it still and stopping if someone drove by.

8) Have 2 wires placed for the re-incission. I was not fully numbed so the deeply placed wire hurt like you wouldn't believe. My tumor had doubled in size in the month between diagnosis and surgery so I had bad margins. Also a new tumor was found and lots of suspicious calcifications. After the first surgery, my breast was roughly the same size but after the second surgery, it became 30% smaller than the left, but no cancer cells were found this time.

9) The terror of having the Adriamycin syringed into my iv line-letting myself be poisoned. Ten weeks of altered tastebuds-could no longer stand chocolate, sweet things or coffee. Salty, cheesy things-good. I never threw up but seemed to be queasy constantly no matter what I took. This lasted until about my second Taxol treatment.

10) The sadness of losing my hair. On Day 16, my scalp was burning and my hair felt heavy. As I combed it, large amounts of it ended up in my comb. By Day 18, almost all of it was gone leaving just a few stray strands. I had cut it shorter so the weight wouldn't hurt my head so much and it wouldn't tangle but even when it was only 2 inches long, it still tangled and hurt. I looked so pathetic-like a sad, old man. I still only have less than an inch of hair.

11) Trying to exercise. I actually ran the day after the first AC and didn't feel differently. But as time went on, I was able to run less and less and soon walking made me out of breath. I went into hibernation for 4 months going out for bball games but mainly staying home. Steve took care of food and most of the housework. I just lay around like a beached whale.

12) Having Steve shoot Neulasta into my belly a day after the infusions at $4000-$7000 a dose so my white blood counts would remain high. This worked less and less as time went on and they are still low. I never had an infection however.

13)Taxol induced neuropathy. The pain of every muscle fiber feeling inflamed in my thighs and finding it impossible to get comfortable. Heavy doses of meds ameliorated this but sent my liver enzymes out of whack.

14) The strange feeling of having it feel that your fingernails could fall off any second. The nailbeds tingled. Just yesterday, I lost 2 toenails though running probably caused this along with the Taxol. I kept my fingernails though they had 4 distinct Mees' lines on them-only the last Mees' line is still visible as the damage has mostly grown out.

15) Losing my eyelashes and eyebrows 6 weeks AFTER my last chemo. I kept telling myself-at least I still have those but no, they fell out. I wanted to just hide. Pencilling them in just doesn't look right. They are mostly back.

16) The annoyance of waiting in the rad waiting room not knowing their system. I would be furious when people who I know had later appointments went in before me. Having to lie absolutely still while they took all of these pre-treatment x-rays. The eeriness of knowing you are being bombarded by tissue destroying radiation. Such a primitive treatment. Having my one arm pit turn almost black from the treatment. The skin has since peeled off and it just looks like I have a tan.

Yep-these are mostly negative memories but I do have plenty of blessings too that I will write about in a later post.


Beth said...

Hi Sue, as someone following behind you, these 'memories' really help. Especially on the running, to know that you stopped for a while but were able to pick it up again later. I will be starting the neulasta needles next week too.

I look forward to reading the positive things!

Daria said...

Wow what a story ...

For some reason, I get shivers reading other people's cancers stories.

It's a tough journey.

Alli said...

Reading your blog now made me cry because so many of the things you described so many of us are going through too and we know the battle isn't an easy one and i question so much these days...that i have no answers to...
My scalp is heavy itchy hurting and I know its coming. i still haven't cut my hair It's over 16 inches long... but I will do it soon..

here are {{{{{HUGSSSSSSS}}}}} fot you...
Love Alli....xx

Sara Williams said...

Your blog keeps me sane and grounded. I still get my running mags, I still look at my running shoes and I will get there soon. Half way through chemo and my side effects are building up, pains, soreness, just awful. I had an aggressive tumour too but it was HER2 pos so I will get herceptin, mine was grade 3 and had calcified, just over an inch in size. I thank God every day that I found it!

Holly said...

aaaaaaaaaaaaaaaaaaaaaaa....yikes - your memories are way too close to home for comfort...i feel like i had PTSD just reading your DO we get through it all...met too - TNBC, Stage II/Grade III; SNB. 4 dose dense A/C followed by 4 Taxol and then 35 rads....ugh....


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