Soundtrack to my healing
When you haven’t used a fork in so long you’re like…
#oralcancer #radiationsideeffects
Healing is hard work
Consider the cucumber. We bought one at a plant sale my daughter’s school was having, and watching it grow has been fascinating. The students staffing the sale told us that cucumbers are climbing vines, and would need a trellis or cage to latch onto (if you’re an avid gardener, you already know this, but I’m a novice; I try to grow a few potted vegetables and herbs every summer, with varying degrees of success). We followed their instructions, and I was awed by the first little tendril that unfurled from the stem, delicately coiled as calligraphy. It listed far from the cage and I thought, there’s no way it will latch onto that! It seemed blind, like a worm or some deep sea creature, tonguing its way, vainly, into the air. But then, a day or so later, this tendril had somehow found the thin metal rib of the cage, and curled around it with such grace and precision that I felt oddly moved. That nature is ingenious and resourceful shouldn’t surprise me, but it did. It struck me as miraculous that this seemingly lost and fragile fledgling of a stem found what it needed in the night, even though it’s merely a rote machination of the plant–what it does, what it’s designed to do.
I’ve wondered if my body is functioning in a similar way. I wonder how much invisible work it does every night to heal and repair what has been ravaged. And I’ve wondered how it knows to do this, without any books, instruction, or bidding. I was in so much pain last week, and felt so vulnerable, that I couldn’t believe my doctors had sent me home to deal with it, alone. I don’t see my radiation oncologist again for six weeks. Six weeks! I would think to myself, enraged and incredulous that I’d been left to flounder through the hardest part of all this, unmonitored. But maybe it’s because there’s really nothing she could do for me, aside from prescribing the heavy regimen of pain meds. Maybe she knew that my body would begin to heal itself on its own, and my job now is to simply wait it out. Only it’s not so simple, because the process has been slow and strangely hidden from me. I wake each morning wondering how I will feel–whether the pain will have subsided some, or my energy returned. Whether my body, in its distress, will have found some kind of mooring.
You can ring my bell
Yesterday, I reached a major–albeit, unsought and unwanted–milestone: my last radiation treatment. It was an emotional afternoon. Unlike Spider-Man, I chose not to take my mask home with me. But, like him and every other cancer patient treated at this center, I did ring the celebratory bell outside the waiting room when I finished. Everyone sitting nearby claps while the radiation techs and administrative staff sound noisemakers. I can’t believe I made it through the past six weeks (much less, the past five months since my diagnosis).
Several friends and family members have asked how I’ll be celebrating, and it’s frustrating to have to tell them that I’m not exactly out of the woods yet. My doctors warned me that I would probably feel the worst during the week following treatment and, so far, that’s been the case. My mouth is a swollen mess, my jaw aches, and painful new scar tissue has formed in my throat as a result of the radiation. I’ve been ordered to stay on the full (which is to say, maximum) dose of my various pain medications for the next ten days before I start to slowly wean off of them, one at a time. So a glass of champagne isn’t exactly in the cards for a while. To celebrate, I cried with my husband, came home, and took a nap.
Today, though, I feel slightly better than I did yesterday. I’m sure a large part of it is the sheer relief of knowing that this leg of the journey (which has been an arduous one) is behind me. I don’t have to go back to the hospital today at 3pm, as I have for so many miserable afternoons. I don’t have to go back tomorrow, either, or the day after that. When I think of this, it’s like taking a deep breath after holding it underwater, or under duress, for(seemingly)ever. But this is not the end. There are still follow-up appointments and scans and the attendant, agonizing period of waiting for their results before I’m officially in the clear. Remission–a word I once gave little thought to that now sounds so wonderful it has the ring of an incantation–is a long ways away. That said, I now also understand that the designation “survivor” is as much about surviving treatment–be it surgery, radiation, or chemotherapy–as it is the cancer, itself. And I survived this.
Happy Mother’s Day
I’ve received many a beautiful bouquet since my diagnosis, but sometimes the best arrangements come from the grubby hands of your five-year-old and are harvested in your own backyard. I believe these are technically weeds, but they warmed my heart nonetheless. Some people have asked how my daughter has been handling my illness, and the answer I give them is, “fairly well.” That’s because she doesn’t have much of a frame of reference for it, despite a few children’s books we’ve read her on the subject. I think she understood that something serious was happening during and after my surgery, because I stayed in the hospital for a few days and was pretty laid up when I returned home. She kept a wide berth then, clearly weirded out by the bandages, stitches, and drain that hung from my neck. This was followed by a brief period, around her birthday, after I’d recovered from surgery and before radiation, when I felt like myself and could do the things with her that I normally do. But that time has since passed, and now I feel like lame, Sick Mom again.
I think the more complicated question that people haven’t asked is how I’m handling my illness as a parent. Like many mothers, I have high expectations for myself in this role. I want to be an active and involved part of my daughter’s life, and it kills me a little bit that I struggle even to read her a story right now (the sores in my mouth, along with its dryness, make speaking for any length of time painful and difficult). I don’t like that she sees me in pretty much the same position every day, which is resting on the couch. I don’t like that I’m often too tired to give her a bath, or walk with her while she rides her scooter. But these things, I must remember, are temporary, and there are all manner of parents in the world with their own limitations, physical or otherwise, who love their kids no less well for these. And, as long as kids feel that love, my sense is they’ll be just fine.
Radiation: No more, please. Thank you.
I’ve been feeling pretty god-awful these last few days, so I’m not up to writing much. I’ll try to post cartoons instead.
April is the cruelest month
Maybe I should just re-name my blog “I miss food”
I’m becoming quite the connoisseur of protein drinks. Apparently, this is the beverage of choice for gamers and coders. I’d say it has less of a metallic finish than Ensure, with hints of isomaltulose and soy lecithtin. The bouquet is barfy. Needless to say, I haven’t taken a solid shit in days (gross, I know. If you’re looking for a non-gross blog on cancer’s ravaging of the body, let me know when you find it). On the upside, I have stopped biting my nails. It’s a nervous habit I developed when I was about 9 or 10, but surgery and radiation have made this nearly impossible. I wish quitting had taken less extreme measures–I remember my dad offering to pay me $1 for each nail I stopped biting when I was a kid ($10 was a lot back then!). Maybe I can collect on that offer now.
I miss food, cont’d.
If you haven’t seen the deeply depressing film by Lars von Trier, then this cartoon won’t make much sense. But when my husband said this the other night at dinner, I laughed so hard it hurt.
Radiation: Halfway there
After today’s appointment, I will be halfway through my treatment. I should have been halfway through this past Friday, but a week ago, the server to the radiation machines was down, so they sent me home without treatment one afternoon. I remember this being a little alarming. My doctor assured me that it wouldn’t affect the outcome of my treatment in any way. “The server was down once before,” she said, visibly annoyed. “That was about five years ago.”
It’s strange to think that possibly everything we rely on is vulnerable to some kind of breakdown–even the most advanced technology, state of the art machines, our bodies, our minds… Confronting this truth is difficult and, no doubt, leaves us reaching for all manner of props and crutches that seem more secure, or for distractions that evade it altogether. What are these, for me? I don’t ask because I want to condemn them, but because I want to recognize them more clearly for what they are. My thought is that, in doing so, I might also be better able to recognize their converse–the ways in which I am whole and present and functional now, despite the cancer and the treatment and its side effects.
The other day, when the radiation tech (whom I’ve gotten to know and like a little better) asked how I was doing, I confessed that it was getting harder–that I was in more pain than I had been before. She responded that this was a particularly tough treatment because it takes away a crucial function–several crucial functions, actually–that you’re so used to having (namely, speech and swallowing). It was a relief to have someone inside the medical profession acknowledge how hard this is. It freed me up from having to be so hard on myself.
Well, then 