Wednesday, June 29, 2011
In order to line up the radiation the same way day after day, set up for it involves acquiring marks on the skin. Though you can opt for Sharpie marker dots covered with tape (which, with all my swimming and sweating, I doubt would hold up), the method of choice is tattoo.
In case you haven't noticed, I don't gravitate toward pain, not for fun or fashion. I am not a tattoo gal.
And now I have three of them.
Albeit miniscule — just three dots, one at dead center of my chest and one on each side, below my armpits — receiving these was emotional for me. This may seem melodramatic, but considering that I was raised on stories of the holocaust, with recurring nightmares and true belief that the Nazis might show up at any minute to drag me away, I suppose it isn't a surprise. I found myself thinking of the tattoos given to concentration camp prisoners. Of course this wasn't the same thing, but there was a disturbing echo in the utilitarian and permanent nature of the beast.
Luckily the technician was patient with me while I came to terms with what was about to transpire. She showed me her tattooing device, a little plastic contraption with a sharp metal tip that reminded me of a protractor or some such measuring tool from high school math class,. She cheerfully offered to demonstrate on herself, showing off the little dots she had already made on her own forearm in past demonstrations. "It doesn't hurt," she assured me.
To my utter astonishment, she was right. It really didn't hurt at all. And the dots truly are tiny.
One more hurdle in the obstacle course of cancer treatment behind me, which means one less in front of me. Hallelujah.
Monday, June 27, 2011
Wednesday, June 22, 2011
|Pureed tomato soup: sauteed onion, garlic, carrot, and diced tomato, white beans and raw avocado add creamy texture, salt and pepper and fresh basil, cilantro, and oregano add yum.|
|Miso soup for breakfast.|
|Nori rolls with black rice, carrot, red pepper, tofu, and cilantro, plus tamari and wasabi gravy, and pickled ginger.|
|Yesterday's salad: spinach and lettuce from the garden, bell pepper, grapefruit, Spanish onion, heirloom beans, avocado, and sprouted lentils.|
I'm playing hookie from cancer for two more weeks before radiation begins, using the time to wrap up client projects, organize my office, weed the garden, exercise, play with my dog, and cook. I've also instituted a new, earlier bedtime, which is serving me well.
The key to happiness, I'm convinced — for me anyway — is to do less of a million things and more of just a few. Less multitasking, less rushing (as I've said), and more work on the things that matter most to me. More lounging around reading too. It's a new discipline, but so far so good.
I have a goal to finish a book proposal (I'm working on a cookbook, have I told you?) by the time I start radiation. I may or may not make that deadline. In a way, it doesn't matter, as long as I'm making progress. What matters most is balance. But I do think I might make that deadline!
I'm determined to open a new chapter of my life in which the work I want to do is at center stage (writing, art) and in which there is at least a moment if not long hours of aimless pleasure each day.
Cancer reminds me that each day is precious and irretrievable. I can worry about not getting as many days as I thought, or I can savor what I've got.
I choose the latter.
|More of my videos here.|
Sunday, June 19, 2011
|The ultra-modern moth on the window sill.|
|My stepson found this in the yard and brought it to me. A jewel of a bird, but long dead.|
|I don't have words for this photo, but it deserves a few poetic ones.|
I'm a hoarder.
I mean, I have some clutter, a bit more than I'd like, but it's certainly not out of control. The hoarding that is an issue is the internal kind, the kind where I say yes to too many things, try to squeeze too many chores onto the To Do list, too many social engagements and appointments and projects onto the calendar, too many servings of delicious dishes from the buffet table of life onto my little plate, into my little belly. I feel stretched much of the time. Pleasures in too a great a number are not pleasures at all. This has got to change.
Even writing this blog post right now, eight minutes before I promised myself I'd be in bed, is too much. So I'm going to stop. Right this minute. Now.
Friday, June 17, 2011
|Peonies from the yard and freesia from my husband (as a congratulations for finishing chemo).|
There is a woman at the gym who went through breast cancer treatment and has given me some interesting tidbits of advice. She told me, about chemo, "You will completely lose your sense of taste within 48 hours of your first treatment." She went on to talk about how she, as a tea drinker, switched to plain hot water, because, why waste tea? She was also one of the three hundred thousand chorus who told me to use plastic cutlery because metal would become intolerable.
I did not lose my sense of taste within 48 hours. Actually, food didn't even begin to taste funny until my second round, about three weeks into treatment. And I was never interested in plastic cutlery. As for tea, I brought a thermos of herbal tea along to my first chemo treatment . It hit the spot that day but for months thereafter the thought of tea of any kind, even pseudo-tea (hot water in a mug) turned my stomach. The sight of that thermos still makes me queasy.
Funny, because I had no such issues with soup.
I saw that same woman today in the locker room and she told me that for her, radiation was the worst part. She said, "Your skin will get so sore it will bring you to tears."
I know this was my friend J~'s experience. But my friend J~ (another J) said that for her, the worst of it was a little redness toward the end. "You'll be fine," she's said to me on more than one occasion, with a reassuringly dismissive shrug.
One thing I've learned on Planet Cancer is that though there may be some common themes, everyone's experience is their own, unique, and likely unpredictable.
I plan to apply aloe vera gel and calendula cream religiously and hope for the best.
Thursday, June 16, 2011
|Anticipation. More of my videos here.|
The other day I came across a DVD someone gave me and thought, I should save this to watch with Jim at chemo. And then I remembered: There is no more chemo!
No more weekly weigh-ins, blood draws, killer bee-sting needles. No more poison injected into my veins. No more eyelashes falling out, fingernails lifting away from the nail beds and stinking, no more gradually worsening numbness and tingling in my feet. No more inexplicable exhaustion mid-week. No more terrible taste in my mouth or steroid-induced sleepless nights. No more dry eyes, dry mouth, unsettled stomach, and low low blood counts.
It's hard to believe.
At the same time, I'm worried about radiation, now officially scheduled to begin July 6th.
Some people get through it easily, without noticeable fatigue, with only a little bit of redness and dryness to the skin. For some the fatigue is profound. Some have painful blistering weeping skin, some experience scarring and pain underneath. And I'm just talking about short term issues. The long term issues are much scarier.
For now, I'm doing my best to savor three weeks of relative freedom.
Let's celebrate, shall we, with a little retrospective - a few photos I took with the laptop to document chemo treatments twelve, thirteen, fourteen, and fifteen, and the morning after number sixteen.
I'll warn you right now, for those who don't want to see: the morning after sixteen I took another "here are my scars" picture. For those that do want to see, there are two other entries where I post pictures. The first was just days after surgery. The next was shortly before I began chemo. And this one will heretofore be referred to as the one between chemo and radiation.
Without further ado:
|At chemo #12.|
|At chemo #13.|
|The morning after my final treatment, chemo 16.|
Tuesday, June 14, 2011
Monday, June 13, 2011
|Rice penne, onion and garlic, crimini mushrooms, burdock root, fresh and sun-dried tomatoes, chick peas, and Swiss chard. Sauted with tamari and a splash of red wine.|
Tomorrow is set-up day for radiation. I'll get a CT scan, three little dot tattoos on my torso which they'll use to line up with the radiation beams, and a casted "immobilization mold" which will be used to hold my body in the exact same position every time I'm treated, beginning three weeks from now - 28 times, five days a week for nearly six weeks.
I'm at the point now where all of this cancer treatment stuff is getting just plain tedious.
So let's change the subject, shall we?
I am behind on sharing my meals with you. Many salads, a few exceptions, and a bit of a sesame seed fetish. Feast your eyes:
|Black beans and guacamole, plus red onions, dandelion greens, beets, shaved carrots and summer squash.|
|This one is undressed. I liked the clean colors and the clean, simple taste. (Though I did later add salty and tangy umeboshi vinegar).|
Tofu, orange bell pepper, red onion, radicchio, and spinach.
|Spinach, radicchio, avocado, chick peas, onion, grape tomatoes, and sweet red grapefruit, and a simple vinaigrette (with sesame seeds, of course).|
|On this day I craved moisture and crunch: fuji apples and romaine lettuce answered the call. Plus carrots, yellow peppers, and good old sesame-lemon vinaigrette.|
|Black beans and basmati rice, onion, carrot, tomato, cilantro, and crunchy jicama with a twist of lime. Oh yeah, and sesame seeds.|
Sunday, June 12, 2011
On my second visit to the neurologist last week, she hooked metal loops over my fingers and, with what looked to me like a little cattle prod, shocked my hands and arms repeatedly, maybe thirty times on each arm. The first few shocks caused my entire body to jump, and reduced me to tears. I could feel my nerves aching, vibrating up my arms like over-twanged guitar strings.
It was, to say the least, unpleasant. It did get easier with subsequent shocks but by no means did it become comfortable. I felt like a lab rat, and once that image hit my mind, I was flooded with images of all the indignities I've suffered on this cancer journey, and the tears would not stop coming. (As I write this line, I find myself crying again. My dog, who was just moments ago resting comfortably on the couch downstairs, just trotted upstairs and has begun licking my feet.)
The test showed no evidence of nerve damage. But, the doctor said, it might be too soon to tell. She wanted to do the second test, which would be more definitive, involving needles inserted through the skin of my upper arm, all the way into my muscles, approximately six needles in a single arm. While the needles were in, I was to move my arm in prescribed ways.
The goal, in the neurologist's mind, was to determine if I had nerve damage. Though I would love to have that information, the goal, in my mind, was to determine whether or not I was getting my final chemo. So I asked some questions and came to the conclusion that she was expecting either to be telling me go ahead, no worries, or go ahead, with caution. She thought the chances were slim that she'd find damage so severe as to contraindicate chemo. After all, a little nerve damage is one thing, a little cancer is something else entirely. I agreed.
So I told her I'd like to skip any additional poking and prodding, if it's all right with her, and proceed directly to the part where I go ahead with chemo. She called my oncologist, and the wheels were set in motion again.
I had my final (hopefully the last ever in my life) chemotherapy treatment on Friday. It's hard to believe that it's over.
I have appointments Monday and Tuesday, in preparation for radiation which will begin in three weeks.
And now my dog is barking and whining for me to play with her.
Life goes on.
Thursday, June 09, 2011
|Thank You Steroids. (More of my videos here.)|
I went to a fundraiser last night featuring a friend of mine from the pool, Marcy MacDonald, a dedicated swimmer who is about to attempt her eleventh crossing of the English Channel. We watched a documentary about her and others who've attempted this astounding feat, and afterward, Marcy answered questions from the audience. Very cold water, long hours, big boats, waves, oil slicks, salt in your throat, chafing bathing suits... To say the least, it's not easy.
Someone asked about sharks and I turned to the friend on my left, P~ , and said, "I've been bitten by a shark." Her face registered alarm. She was beginning to compose a question when I went on to say, "It took my whole breast."
P~ laughed and slapped my leg. But was that funny? Can I make jokes about my missing breast? I'm never quite sure.
I was editing video the other day (the one below), and came across a section of footage filmed by J~ of myself in a tank top, chucking balls for the dog. It was the first time in a long while I'd seen my new body in three dimensional motion outside the confines of the mirror. In the same way it jars me when I happen upon a person with a missing arm, I was brought up short by the sight of my own chest. The thought was: I am asking a lot of people to take this in stride. I see that familiar moment of hesitation often, but still, I am amazed at how well people are doing it.
|After Mastectomy: My Lopsided Life. More of my videos here.|
Wednesday, June 08, 2011
|More of my videos here.|
In a few minutes I will peel myself away from the computer and get ready to leave for my morning swim. After that, breakfast, a walk with the dog, then back into the car, back on the long road to Hartford to see the neurologist I met with yesterday. This time, she will not be asking kindly questions and having me do fun little tasks like touch my nose, her finger, my nose. This time she'll be hooking up electrodes and shocking the muscles of my forearms with electricity in order to test for nerve damage. And after that, assuming the results are either alarming enough or not definitive, she might want to stick needles into those muscles and take samples of my tissue. All of this to help make a more objective determination as to whether I should go ahead with my last chemo treatment.
"Anyone else," my doctor told me on the phone Monday, "and I would say let's just go ahead with treatment. But you're an athlete and if things get worse this could mean a real impact on your quality of life. Let's see what the neurologist has to say."
So far, the neurologist has not said, but I have become very clear. There's no knowing if the numbness in my feet and problems I'm having in my hands will persist or get worse, and it is unlikely that today's tests will change that.
I never gamble anything I'm unwilling to lose. Given the choice between alive and impaired, the choice is not a difficult one. I want to go ahead with treatment. And I don't need any needles stuck into my muscles to help me decide.
I'm hoping that, between these two doctors and myself, we can come to a consensus without that test.
Friday, June 03, 2011
|Dreams do come true. More of my videos here.|
I was supposed to get my final chemotherapy treatment today. No such luck. I'm having weakness in my left hand and wrist, and my feet are increasingly numb. CIPN (Chemotherapy Induced Peripheral Neuropathy) or too much cycling last weekend, or a combination of the two are to blame. Oh well.
What else can I say? I don't know if I'm risking my overall survival in favor of comfortable typing, keeping my fingers together when I swim the crawl, and one-handed bicycle gear shifting. But it's not up to me. I tell the doctor what I'm experiencing as accurately and honestly as I can, and she makes the call. Though I trust myself as the expert on my own body, I trust her more when it comes to this. She's seen what happens to other people, I have not.
I'm supposed to call in to report my symptoms on Monday.
What happens after that? It's yet to be determined.
A friend of mine from high school, a co-inhabitant of Planet Cancer, wrote me last night to tell me she's in the hospital. (She has breast cancer too; we have the same oncologist. I made this video about her.)
She had a seizure on Tuesday. They've found a tumor in her brain. Because of this progression of the disease, she can no longer continue with an experimental drug that seemed to be keeping the cancer in check in other parts of her body. On the bright side, she tells me, she will no longer have to travel several times a week to Boston for treatment.
Next stop: cyber-knife, targeted radiation to the brain. After that? It's yet to be determined.
We spoke on the phone this morning and we're in agreement. It's the not knowing that's the hardest part.
In the meantime, we grieve our losses and enjoy whatever blessings we're offered.
There are no straight roads in life. The twists come when you least expect them. But hopefully the road is long and you can take great pleasure in the winding.