Category: Recovery

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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.

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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.

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I’ll take what I can get

This probably gives you a good sense of where I’m at today. The hours pass at a snail’s pace, but I’m growing accustomed to this. Time is marked mostly by the dosing of different medications, in-between which I sleep or make myself drink something. Monday is a big day, however: my last radiation treatment!

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Side effects may include…

While perusing my radiation packet a few months ago, I saw that a likely side effect of treating the mouth was “thick, ropy saliva.” As with so many other things I read or was told before I began treatment, I laughed (among them, my surgeon warning me that I would probably lose 15-20 lbs.). But here I am in my last week of radiation, with saliva so thick and ropy you could use it to rig a ship. Seeing is believing.

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The home stretch

Things really took a nosedive this week. When I saw my radiation oncologist after my treatment on Tuesday, she said it was time to pull out the big guns–namely, Oxycodone. “You want to stay ahead of the pain during these last two weeks,” she explained. I was wary, as I’d experienced some unpleasant side effects from opioids before (mostly severe nausea), but acquiesced. Then, like clockwork, after my second dose of Oxy yesterday, I felt immediately faint, feverish, and dizzy. I broke into a cold sweat and had to lie down on the couch. Dry heaves followed shortly thereafter (I don’t have a whole lot in my system these days).

Unfortunately, conditions did not improve. When I went to my radiation appointment in the afternoon, I looked and felt awful. My radiation tech noticed immediately, and said we’d go back to consult with the nurse after my treatment. She also acknowledged that I’ve been doing really great so far, commenting that many people look and feel the way I did much earlier in the course of their treatment. This was an odd consolation, but I was willing to take it. When we later met with the nurse, she confirmed that everything I was experiencing was pretty normal at this stage of the game, and was likely to get still worse (not exactly what you want to hear when you feel like you might pass out in your chair). She decided to schedule me for my first infusion, which was earlier today.

This ended up being the first time since my surgery that I’ve actually felt like a cancer patient (which is to say, weak, awful, and exhausted). The hospital’s “infusion center” is a startlingly crowded ward of little, curtained IV stations. I sat in my designated recliner, bracing myself for one of the things I’ve come to dread most: nurses trying to find a vein. I’ve inherited notoriously small, deep, hidden veins from my mother, and it’s always a challenge for someone drawing blood or sticking me for anything else to find them.

Apparently, the anxiety surrounding this relatively routine procedure, combined with my general fatigue and depletion from radiation, was enough to trigger my second episode of what I’ve now learned is an actual condition: Vasovagal syncope. As soon as the nurse inserted the IV (which she was able to do on the first try), I became faint, dizzy, and nauseous. I passed out briefly, and came back to with a violent fit of vomiting. This also happened a few months ago, when my surgeon was taking out the stitches in my neck. He thought I was having a minor seizure. Because I barfed all over the front of my own shirt, I had to throw it in the bio-waste bin and leave his office in an open-backed hospital gown and jeans. I received some strange looks in the elevator, and one guy even asked if I was making my escape.

Thankfully, that didn’t happen today (the barfing on my own shirt part, anyway). I did throw up, but the nurse had a bag at the ready when I told her I struggled with needles. She was patient and kind, which helped calm me considerably. I sat for an hour, getting a simple saline drip to replenish the fluids my body has steadily lost over the past few weeks. They also threw some morphine and Zofran into the mix, so I was like a groggy zombie by the time we left.

Now, several hours later and the afternoon’s radiation appointment behind me, I’m feeling *slightly* better. Baby steps, just like Bob.

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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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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.

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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.