Tag: mammary analogue secretory carcinoma blog

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It’s the strangest thing…

I’m now seven weeks out from radiation, and can happily report that much has improved. I can eat almost anything I like, with the exception of some meats. My energy is back, and I’m not in any physical pain. But emotionally, I’ve struggled. Life has felt oddly amorphous as I’ve healed. Rejoining the land of the living/well was more of a difficult transition than I thought it would be. Kind of like a war veteran readjusting to civilian life, but not. I miss being surrounded by others who are experiencing something similar to what I’m going through, or have gone through (i.e., the quiet confederacy of medical waiting rooms). I miss the myopic focus that illness induces–its consuming totality. I’ll even admit, with no small amount of shame and surprise, that I miss the attention that comes with it from everybody else. These are not things I anticipated feeling once I was on the other side of this. In fact, I naively thought that, if I was lucky enough to get to the other side of this, I would never have a bad day again. I would just feel so damn grateful to be alive, eating, and well, that there wouldn’t be room for any other emotions (particularly, negative ones).

But feelings, even gratitude, even joy, even (thank god) excruciating pain, move in and out like weather. And it has been this–the incessant changes to my body and outlook over the past six months–that has proven the most difficult to navigate. In December, I thought I might be dying. In May, I was granted a stay of execution. The time in-between was like nothing I’d experienced before. No wonder that, in returning to “normalcy”, I feel like a stranger, or interloper, in a place that was once quite familiar.

It’s hard for me to explain, but Katharine Smyth gets at this with astounding precision in her memoir, All the Lives We Ever Lived. Virginia Woolf, she writes, makes “a serious argument for how illness separates us from the healthy, whom she calls ‘the army of the upright’, and how, for the invalid, ‘the whole landscape of life lies remote and fair, like the shore seen from a ship far out at sea.’ […] It must be so difficult to bid farewell to one’s secret world of illness, and perhaps more difficult still to reclaim and trust in one’s new place among the living.” Indeed.

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Or maybe…

I’ll lean right the fuck into it. The future, that is. I’ve had a profoundly reassuring week, and I figure I should share the good news here, just as I have the bad. On Wednesday, I saw my surgical oncologist for the first time since he removed the stitches from my neck in February (and well before I began radiation). He said I looked great–that everything was healing wonderfully. Personally, I think anyone who’s not barfing all over themselves–which I was the last time we met–would get as favorable a review. But this was a relief to hear, nonetheless. I then asked him if my prognosis was good, and he told me I was in the best possible position I could be in with respect to that: the remaining tumor he’d removed from my tongue was small, my lymph nodes had been clear of cancer, and they staged it at I. “You can relax and enjoy your summer now,” he said. “The hard part is behind you.”

Hearing this was like a benediction. They’ll still continue to monitor me via CT scans of my head and neck for the next five years, of course, but there’s good reason to believe I just might be alright. The doctor then asked if I wanted a referral to a plastic surgeon to see if they might be able to laser off the long scar on the side of my neck. “I know it can make people self-conscious,” he explained. I declined. I’m strangely proud of it. As I read the other night in the knock-your-socks-off memoir, All the Lives We Ever Lived: Seeking Solace in Virginia Woolf by Katharine Smyth: “We are each of us circumscribed within a body, the shape of which, the scars on which, the holes within which, tell our tale if you care to read it.” I actually now have two scars on my neck, the one from my recent lymph node excision and another, fainter one, across the base of my throat from a partial thyroidectomy I had at age twenty-one. My daughter likes to trace her finger over them when she’s lying in my lap. It looks like I survived the guillotine or something. Twice.

Then today, I saw my speech therapist, who also gave me a good report. She observed me chew and swallow a few sample foods they keep on hand (the graham cracker was a challenge), and said she was impressed with my progress. She encouraged me to continue doing my weird tongue exercises, as latent complications from the radiation can occur as long as five or ten years down the road. So I figure I’ll try to do them when I’m driving and give anyone who happens to pull up next to me a good laugh.

When I got in the car to head home after this appointment, I cried. The weather outside was so fittingly, beautifully bright it seemed staged. I still feel the clench of fear in my gut when I think of everything I’ve been through (and will continue to go through in the coming months and years), but I’d like to give myself permission, as my doctor did, to feel joy a little more fully, too. I’ve always been frugal with this emotion, bearing (stupidly, constantly) in mind a line from Faulkner’s Absalom, Absalom! claiming that the minute you let down your guard is “the instant which Fate always picks out to blackjack you.” But what else is there to do, really? The house always wins, and yet you have to play. That’s the rub.

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Turning the corner

Well folks, I’m using a fork again. And not just on my hair. Over the past few days I’ve had some solid foods. They’ve had to be moist ( a god-awful word, I know) because my mouth is still very dry and my saliva is pasty (perhaps an even worse word). I can only manage a few bites, not an entire meal, but this is progress given where I was a week ago. I’ve found some success with watermelon, over easy eggs, well dressed salad (romaine lettuce only), tzatziki yogurt, peaches… In short, anything with a high water content that sort of salivates for you (man, do I feel sorry for my readers who are not, themselves, recovering from oral radiation. These past few posts must be a total bore. If I happen to have any readers who are recovering from oral radiation, take heart. Things do improve, albeit gradually). I’d say food tastes about 70% the way it used to. Chewing and swallowing remain slow and effortful, so eating still isn’t really a source of pleasure. But I’m beginning to believe it might be again someday…

It’s funny, I have a newfound wariness of that word (i.e., someday). Of the future in general, really. I don’t know whether I can lean into it fully–whether it will support me. So much of what I used to to take for granted has become a big IF… If the treatment worked… If my next scans are clear… It’s hard to inhabit the conditional and contingent, despite the fact that this is where we always already are. I’m treading lightly, I guess you could say, my heart a kind of rookery where the birds are liable to startle and take flight at any minute. A tall drink is definitely in order.

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Blech

The past week has been ROUGH. My pain has escalated with each day since radiation ended. Mornings are the worst, but, once I visit what feels like our in-house pharmacy, things improve ever so slightly. That said, I miss not being on a slew of medications. I miss eating normal food. I miss my daughter, who’s spending the week with her grandparents because my doctors warned me that I’d be feeling terrible directly following treatment (and they were right). In short, I miss being a person who’s not dealing with cancer. But, if I have to be someone that is, I’m actually grateful it’s this person. The person writing and sketching and making an effort here and elsewhere. The person who got through it–at least, the first part–with grit, if not grace.

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I take my waking slow

A friend who visited the other day asked me how I’ve been passing the time, and it was difficult to formulate an answer. I’m on a short term medical leave from work, but the past few months have felt nothing like the summers I enjoy off as a teacher. Those days are usually filled with leisurely errands, cooking, reading, small projects around the house, our annual trips to the beach and the lake–in short, stuff I like to do that’s more of a challenge when I’m working. And well. But right now, I’m not. This is a hard thing to accept, both for myself and for others. I want to be able to say that I’m passing the time productively–that I’m keeping apace with the world and its various demands. Or that my role in it remains an active one… But illness is really more of a passive art, as I’m slowly learning.

For example, I’ve had to increase the dosage of my pain medication, which makes me drowsy and means I can no longer drive. The radiation also causes fatigue, so I spend a good part of the day sleeping. I actually love the hours in which I’m not awake because I don’t feel any pain or discomfort. I’ve even fantasized about being put into a medically induced coma for these last few weeks of treatment (which my generally pleasant, positive doctor has said I’ll want to “blot out of my memory”), then magically awakened, like Snow White or Sleeping Beauty, when it’s all over.

The remaining portion of each day is now devoted to consuming the requisite amount of fluids, which I hate. I used to look forward to meals, but now I dread them. Swallowing is painful and requires a near herculean effort, so I work my way through a single glass of water or an 8oz. Ensure in, like, an hour. Because I’m losing weight and not getting many calories, I’ve not felt up to my daily walk. I’ll still go outside (as the weather has been beautiful), but mostly to sit on the deck or check the mailbox, savoring the sun on my skin.

In short, I’ve been convalescing. This is a rather foreign concept to our modern minds (not to mention, an outright affront to the busied, breakneck ethos of modern life), but it was once quite common. Pick up almost any 19th century novel and at least one character in it will be at–or headed to–some oceanside villa “to convalesce.” They’ll sit in a wheelchair on the shore, blanketed against the bracing sea winds, the salty air a supposed elixir of sorts. I feel oddly akin to them now, despite our differences in time and place. Just as I’m beginning to feel akin to the folks in the radiation waiting room. I see the same people at the same time every day, seated in mostly the same chairs. We smile wearily at one another, sometimes chatting a bit and sometimes not. It’s a fellowship I never sought, but will be strangely sorry to lose. Perhaps it will be succeeded by another one: survivors.

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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.

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Of symphonies & superheroes

I made it through Beethoven’s 9th (which was extraordinary), and Spider-Man made it through his treatment. When I walked into the radiation room yesterday afternoon, his little mask was missing from the wall. I asked the tech if he’d finished and she nodded, smiling sadly. She said that he’d wanted to take his mask home with him, and I teared up as they prepped me on the table. Things are becoming rather difficult and painful now. It’s funny–just as I’ve become adjusted to the actual radiation, to my seven minutes in the mask, the remaining 1,433 minutes of each day are proving much more challenging. I have open sores on my tongue and the walls of my mouth, which make it painful to drink, swallow, and even speak. I’m back on the liquid diet I was relegated to just after my surgery, and I pretty much have to force myself to get anything down. I saw my radiation oncologist, Dr. Higgins, yesterday (I see her every Tuesday), and she prescribed some new pain medication to help with these side effects. We will most likely increase its dosage with each remaining week of treatment. I’m having trouble envisioning the end now–envisioning myself making it to the end–but Spider-Man did it, so maybe I can, too.

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Salivation Station

Although it’s nice to have a reprieve from radiation on the weekends, that also seems to be when the side effects crop up with a vengeance. And this weekend they’ve been particularly rough. I’m not sleeping well because my mouth is painfully dry and sore (while Biotene claims to offer 4 hour relief from dry mouth, I get out of bed to use it every 2-3 hours). Last night’s dinner might also have been a Last Supper of sorts for me; this morning, I could barely eat applesauce. Everything tastes somehow both bland and sour, and it’s become quite difficult to chew and swallow. Oh yeah, and talk. Which makes this Sunday a good one on which to be seeing the Atlanta Symphony Orchestra perform Beethoven’s 9th. I bought the tickets well before my diagnosis as a Christmas gift for my husband. I’m hoping it will be as powerful and immersive as it was the first time I heard it performed live in Seattle, and that I manage to make it through the whole thing.