Wednesday, April 10, 2013

Crash Course on My Cancer

I haven't been here in a long, long time but I've been yearning to write, especially about what's happening with my cancer, and I think this is a good repurposing of Ye Olde Blogger for me. A Caring Bridge site didn't appeal to me -- it's clunky and I tend to associate it with terminal cancer (perhaps wrongfully so, or maybe I am just full of too much hubris). I also didn't feel like loading up everyone's Facebook newsfeeds with updates either. I know some people look forward to scrolling through puppy posts, cherubic babies, and triumphant dancers hoisting trophies as their little dose of happy with their morning coffee so I don't feel like foisting my day-to-day cancer issues on everyone. Maybe that's wrong but this feels right to me. At the same time, I know some of my friends and family like knowing what's up but don't know how to ask, and they feel cut off if I don't include how I'm doing on Facebook all the time. Due to all of these factors, I have downloaded the Blogger app to my phone and plan to let my over-sharing nature run wild. Please feel free to comment or lurk as you see fit. Get ready!

So...hmmm.. how to start. I suppose a good way would be to dispel some confusion about my cancer. I envy those of you who have never needed a crash course in cancer stages and treatment, and I will explain here just how friggin' dastardly cancer is.

My cancer is indeed breast cancer, not liver cancer. Though my breasts were removed in 2008 and I underwent adjuvant chemotherapy over four months after that, followed by six weeks of radiation and three and a half years of hormone therapy to block a reoccurrence, the cancer still managed to circle the wagons on my liver. Since the three tumors I had were isolated to the breast tissue and my sentinel lymph nodes (the first ones in line to absorb any cancer coming out of the breast) were cancer-free, I was labeled Stage IIa and that means the assumption is that it was isolated. Maybe it had already trickled into my liver then, maybe it was just circulating in my blood, who knows? When my largest tumor in my liver was biopsied this fall, the sample showed markers that indicated it was indeed breast cancer. Anyway, what I have now is liver metastasis, and that makes me Stage IV. Stage IV doesn't always mean terminal; it means that it has proven itself to be aggressive enough to leap to other organs and grow. It is believed to be everywhere, just driving through the neighborhood, assessing curb appeal and looking for open houses.

As such, a liver transplant isn't an option. Such a surgery would compromise my health (and take a liver from someone who really needs only a liver) only to have the cancer either pop up there again Whac-A-Mole style or grow somewhere else, requiring chemotherapy that would be even more debilitating now with an implanted liver. There's no cutting it out either since the organ is pretty much shot through with it. Even the larger tumors are confluent, meaning they're sort of connected to one another. The only option is to use two chemotherapies -- one that keeps new blood vessels from forming and the other that keeps fast-growing cells from dividing -- to kill these pieces of shit.

Chemotherapy doesn't make me vomit. There are some chemos that are more emetogenic (meaning they will make you puke) and I was on those four years ago, but I was given the antiemetic big guns for starters and if those didn't work, there were more. I never puked or even felt nauseated beyond what could be treated with a glass of ginger ale.

What I am being treated with now does, however, make me feel shitty in other ways. Over six months, I've had mouth sores, an infected parotid gland, daily bloody noses, a tongue that can't taste, fingertips that feel like nonstop pins-and-needles, and fungal infections in my toenails and fingernails. There's loss of hair (everywhere), loss of appetite, loss of memory, loss of muscle mass, loss of hormonal function, loss of menses, loss of libido, and loss of emotion. I know all you pretty young things out there think not having a period is a blessing, but after two pregnancies preceded by being on the Pill, I became attuned to the incredible ebb and flow of natural hormonal tides and how they affected my personality, productivity, creativity, and interest in the opposite sex. I'll take a dumb ol' period to get that back. Meanwhile, I am an emotionless cyborg, full of implanted devices from tip to tail and no interest in the human basic needs beyond sleep.

What having chemo feels like is similar to a day-old flu. When I get home on Tuesdays, the Benadryl has started to wear off and I'm ramped up from the steroids, but I just want to lie down because I start to have body aches, a headache, and just that general fluish miasma of yuck. Then I can't sleep because DECADRON! When I finally get up on Wednesday, my face is all swollen, hot and red and I have a sore throat. Thursday is better and Friday is better still, but the fatigue is cumulative. My heart rate is elevated very easily so I wear out quickly. I usually try to exercise on Monday, but being on the elliptical at half my normal resistance at my typical speed means my heart rate goes up to 182. Get why I'm tired all the damn time?

I do not know if/when I will be done with chemo. I will continue to be on chemo until there is No Evidence of Cancer (or NED). I have a CT scan and a bone scan every three cycles to see how things are cooking in there and if anything is popping up elsewhere. A cycle, for me, is Avastin and Taxol on Days 1 and 15, just Taxol on Day 8, and then a week off. Today I am at Cycle 6/Day 9 so I will plan my scans over my week off in two weeks. Today is the day I have a red bloated face, much different than the smiling and freshly shorn Cycle 1 me on my Facebook Profile Pic.

Okay, that was a sufficiently lengthy post to get you up to speed. Time to force-feed myself water and close my eyes... Spring is coming!


Scott Hess said...

You write beautifully, P.

Odd as this might sound, I'm really happy you chose to write, and to write here. This feels more like you than CaringBridge. And although I get secondhand updates from Casey, I hesitate to ask you for all the treatment chapter and verse when I see you, because we're usually doing something frivolous and/or dumb and why muck up frivolous and dumb with cancer talk, right? But I do want to know, and I crave the kind of specifics you posted here.

Anyway, thank you for writing this. I don't know how to say it any better than, "I really enjoyed reading it." Which sounds odd.

Hope you are NED soon!

Dina said...

I too am so happy that you are writing. I think friends and family will be relieved (?) to get a better understanding of your therapy and get a chuckle with your humor. Consider it another part of therapy. Love, Hugs. Kisses

Jamie J said...

I think Scott phrased very well what I would have tried to say here - not only am I pleased and relieved that you have an outlet for your thoughts and emotions, but I'm grateful to have an update without having to bug you for it. I think about you more than you might realize, and am always hoping like hell for the best.

Anonymous said...

I'm so happy to hear your voice here, Paula. I'm following, supporting and cheering you on from the southern wild.

Anonymous said...

I too am so happy that you have chosen to let us all know what you are feeling and experincing as you go through your treatments. I believe that Scott expressed my feelings extremely well, and you have involved us in your emotional journey, which is very helpful to those of us who do not have first hand experience with the drugs and the tests. You are a beautiful human being, and I admire your ability to put in words what is happening to your body and psyche.
Know that you are loved and supported in any way possible.

Susan said...

Paula, you are a beautiful woman, beautiful writer, and beautiful human being for sharing your story with others. It is always awkward to ask questions on Facebook especially because while you seem open, asking about someone's health seems so impersonal and insensitive through Facebook.

Lisa N said...

You are a phenomenal writer but an even more phenomenal woman. Thank you so much for sharing. It is nice to 'connect' with you through your words. Know that I'm thinking of you, and sending you strength and love.

Auntie Wall said...

It is Auntie Wall and I am thankful for your update. I think and pray for you always, and, just as you said, am always hesitant to ask specifics. Thank you for sharing and bravery and for being my beautiful niece.

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Your Mom said...

You are so loved and cared for. Your write with such honesty and eloquence. (I know that) This blog clears your mind for you and the minds of the people who puzzle about you and love you.

Your are honest, beautiful and vulnerable in your photo, the pretense of hair, make-up and pretty smile purged. Cancer can't take that away from you.

I know you will come out clean from this. It will be OK.