It’s not fair.

No, not the whole cancer thing. I mean, yeah, that pretty much sucks but I never went through the “Why me’s”.  With my family history and the fact that 1 in 8 women will be diagnosed with breast cancer in her lifetime, why not me?  What I’m finding completely unfair is that while I no longer have a hair on my head I still have to shave my legs. What’s up with that?  And another delightful side effect of all these poisons medications that I am on is forced menopause. Forced.. as in forget about easing into it.  One of the (unexpected) side effects of the steroids I am given with chemotherapy is acne. Seriously?    So, while puberty and menopause wage an unholy war in my body, I’m going to complain bitterly about how unfair life is. Don’t blame me.. it’s my inner teen.  Later my inner menopausal crone will tell me to suck it up and get over it. For now, the teen drama queen wins.

Snatched bald

Literally.  So disregard my previous post about screwing with their stats by keeping my hair. Chemo won this round.  After yet another night of feeling the pillow and my head fairly obsessively I decided to vigorously brush to help things along.  I got an impressive amount of hair but now my scalp felt tender. So I started “gently” pulling out handfuls.  Yikes..now I looked like a plucked chicken.  I considered leaving the down as cushioning under my wig, but I needed to even things off. After a quick trim I thought what the hell and took the electric razor to it.  The good news is my head is not horribly misshapen like I have long suspected.  The stubble is minimal and I read a lint roller can take care of that.  I am rocking the Sinead O’Connor!

Looking ahead to spring though.. after this round of chemo I start another that will mean weekly treatments, so basically no recovery time in between. I was thinking at least I can sit out on my deck with a book or putter in the garden when I feel up to it. But no.. with this one (Taxol) I need to stay out of the sun. Completely. Lovely.  After a winter in Maine I’m white. Blindingly so. I am also now bald. Spring 2012 will find me rocking the Powder. Anyone know where I can get some blue shades?

Have I mentioned..

How much I hate the color pink?  Not all pink… just pale, baby girl pink. Even when I had 2 baby girls I wasn’t fond of it. They were dressed in bright primary colors, or at the very least dark pinks and purples. (You’re welcome girls).  Who decided pink would be a good color for breast cancer?  I didn’t get a vote.  Fight like a girl? pfft… What if I break a nail? A pink frosted nail? 

disclaimer.. I do love the hand crocheted pink ribbon blanket my aunt made me. But that’s it.

Can you NOT?

Dear Dr. Can you not tell me every damn time we meet that my hair is going to fall out? From my very first post diagnostic visit I have been reminded that I will lose my hair at every appointment, by every nurse, doctor, coordinator.  I realize this is very traumatic for most women and I doubt I will be any different when it happens to me, no matter how prepared I think am, but really? you feel the need to mention it ad nauseum?  Does the “yes I know”  “I have wigs, scarves, hats and turbans ready” or “I’m as prepared as can be” not register to you?  Why not just throw in “by the way, you have breast cancer” each time too, in case it’s escaped my thoughts for a nanosecond?  I had my first post chemo visit yesterday. I was feeling great, my numbers were good, I had plans to eat out and shop afterwards with my daughter.  At the end of the visit Dr. Doom asks what day it is again? I say Day 11. “Oh, well your hair is going to fall out in clumps now” and describes how it will feel.  I spent the rest of the day feeling like there were a million little invisible bugs crawling around my scalp ready to uproot my hair and throw down.  I envisioned myself standing in line at the bank while my hair fell out in waves and the branch manager discreetly followed me to the counter with broom and dustpan.  Last night I woke up every few hours and felt my head and pillow for signs of baldness. By morning I had myself convinced I can’t leave the house now until “it” happens.  Screw that. I’m keeping my hair just to mess with their stats.

 

The ball dropped..

And so did my misguided sense that I would escape all the unpleasantness of chemo. New Year’s Eve was my first day off the steroids and by evening I was alternating between spending time in the bathroom and curled up in a ball with shaking chills and body aches.  Felt like the worse flu ever.  I spent a mostly sleepless night and then gave up and was in the recliner by 5 a.m. where I spent the better part of New Year’s Day feeling sorry for myself, missing a family party.  It was a beautiful, unseasonably warm day here and my husband tried to lure me outside with a bonfire. I did watch a little from the window.  By late afternoon I was feeling a lot better and attempted to make dinner. We bbq’d turkey burgers and I managed one bite before I decided to have sherbet for dinner, a repeat of lunch.  By the time I went to bed I felt really well, just extremely tired.  In my delirium the night before (only a slight exaggeration) I completely forgot about the Imodium I had been told to have on hand. When I remembered it at noon, one dose was all it took.  I won’t be forgetting that again!  Now that I have a sense of what to expect and when, I think I will be better prepared next round.

Today I get a do-over. This is my New Year and we are clearing out 2011, packing away Christmas to start. Tomorrow, it’s life as usual. I’ve spent enough time anticipating and dreading symptoms that may or may not come, only to be blindsided when they do.   If one miserable night is as bad as it gets, I’ve totally got this! Happy New Year.

So is this supposed to make me a better person?

I read these blogs by cancer survivors and other women just starting out on their own journey as I am and it seems like there is so much hope and inspiration I want to just soak it up like a sponge. There is plenty of sadness too and while I don’t turn away from that.. I just don’t claim it as mine.  I am not particularly religious, though I do consider myself spiritual. I have a faith in God that never waivered even as I walked away from my childhood church and I know I am being prayed for by people with much greater faith than my own and I am grateful for that. Maybe this is my test?  Maybe I am supposed to learn patience?  I have no idea …but today I would have been happy to learn where the item I needed to ship out was after promising it would go today. I wish I hadn’t had a small melt down and decided to shut down my business if I was going to have to ask for help finding things (I didn’t, but the possibility remains)  I would love to be this always calm and serene patient not causing any trouble to those around me, soft spoken and sweet and always thankful.   But get real.. I had a lumpectomy, not a lobotomy.

Day three and the horrible terribleness remains at bay

So far so good as far as side effects. I took the anti-emetics religiously the day of chemo and all of day 2. This morning I woke up feeling pretty good and decided to only take as needed and so far one slight feeling of nausea was quelled with a hard peppermint candy. The steroid is making me a little hyper so I did a bit of housework. Enough to feel useful and to use later as a “poor me” if I need to pull one out.. win/win.  I am so hungry on the steroid and trying not to give in to that. If I have to have cancer I should at least get the benefit of weight loss. Dammit. Tomorrow is my last day for the steroid until next round so I think I can maintain some control. We shall see.   My biggest fret is my hair today.  I feel it tingling and itching and I know it will be jumping ship soon. I have wigs and hats, scarves, turbans, so I’m ready.  I’m debating helping it along to be done with it. Then I get thinking maybe it will just thin for a while and if I shave I will have horrible itchy stubble.  My family is no help with this decision.  I guess when the mister is busy snaking out the drain he may wish he had been willing to yield the razor!

One down….

Today was my first chemotherapy treatment and it went well. I arrived with my “chemo bag”.. a red canvas Trader Joe’s shopping bag with a notebook and pen, novel, Kindle Fire and a hand made breast cancer awareness blanket given to me by an aunt. I was ready for anything.  It was not nearly the horrible experience I had built up in my mind over the past few days. One big concern to me was my port a cath. It was placed 30 days ago today. I had read that if unused it should be flushed every 2 weeks. I have had blood draws and a MUGA scan since it was placed and no one seemed eager to access it. I could have insisted I suppose but hey, if the chick with the fat needle is hesitant to stab a foreign body embedded in my chest, who am I to argue?  I mentioned to the RN who was doing my blood draw today that it was virgin territory. She seemed surprised but didn’t say too much. After swabbing and anesthetizing it she told me to take a deep breath on 3 and plunged the needle right in.  It was no more painful than any other needle stick and worked beautifully. She told me afterwards that she shared my concerns and it should have been flushed within 3 days of implant. Ooops.

Next I had a nursing assessment and then met with my Oncologist. They both went over everything again and answered all of my questions. I find it helps to keep a notebook. I also learned that the Tumor Board has recommended me for genetic counseling. I’m not sure when that will take place.

I was placed in a private room as all the bays were full. I was very comfortable, the nurse was attentive and again explained each step and took time to answer any question I had.  I was given lunch and ate while the anti nausea drugs, steroid and saline were being introduced. Then 2 vials of Adriamycin over 5 minutes and finally Cytoxin for 30. I felt very little in the way of side effects. At the end of the last infusion my sinuses stung a little, like the sensation you get when chlorinated water goes up your nose while swimming. The sensation comes and goes, but is not very bothersome and I don’t expect it to last. There was also a slight metallic taste in my mouth that honestly I did not even notice until the nurse asked if I was experiencing it. I have a laundry list of anti-emetics at my disposal and am taking them on a schedule to hopefully avoid paying homage to the porcelain gods.

I have a list of possible side effects and was told to keep track of and report anything. Anything?  hmmm … I planted myself in the recliner of dread when I came home and waited for the horrible terribleness.  After 30 minutes I became bored and watched 2 episodes of Six Feet Under.  After 2 and a half hours in a reclining position preceded by a 40 minute car ride preceded by an afternoon on a hospital bed I noticed my hips and legs were aching.  I considered writing it down, but then decided I probably needed to just get up off my ass and move around.

I moved from the recliner to my computer desk where I have been enjoying a cup of wonton soup while writing down my experiences. Now it’s off to a hot bubblebath.   All in all, not a bad day at all.

…. fifteen to go

Updating Netflix

When I first got my diagnosis I was about halfway through Season 1 of Breaking Bad, a story of a man diagnosed with inoperable lung cancer who starts manufacturing meth to make money to leave his family.  I finished seasons 1-3 and next in line was the entire series of Six Feet Under and I’ve just finished Season 2 with 3 more to go.  I had a glance at my queue this morning and after I finish this series, next in line is 50/50 and and waiting in the wings is Season 2 of the Big C and Season 4 of Breaking bad.  Do you sense a trend?  Interspersed among all the maudlin is a lot of comedy, admittedly mostly dark comedy, and some horror and adventure as well, but a whole lot of medical drama, cancer and death.  I’ve decided to offset the morbid viewing with reading only uplifting and funny books and have just started Cool, Calm and Contentious by Merrill Markoe.  Perhaps I’ll save Love Story for another time.

My Gift To Myself

I’m taking today to feel sorry for myself. I have spent the last 2 months trying to make everyone else feel better, pretending all is normal, this is just a temporary blip ..but it is exhausting. I’m tired, sad and scared. This isn’t normal. This isn’t just an ordinary Christmas. In 4 days I start chemotherapy. The better part of the upcoming year will be spent fighting cancer and how many years afterwards will be spent worrying that it’s come back?  Tomorrow I will put on a happy face and on the 27th I will begin my journey to survivorship, but today I am going to cry and be pissed and give myself a splitting headache. Later on after I’ve ruined a few batches of cookies I am going to have a big extra dry martini.  Merry Christmas.