Tag Archives: side effects

My poor, dying skin

So, I might’ve spoken too soon about how easy radiation is. I mean, no question it’s easier than chemotherapy, but it isn’t quite the breeze I depicted it to be in my last post.

Here’s what’s happening all of a sudden: my skin is dying. I’m not being dramatic here. It’s literally dying. I asked my radiation oncologist why I was getting these gray/blue bruises all over, and he told me that those weren’t bruises, but patches of dead tissue. So. Damn. Disgusting.

Only it doesn’t end there. In the areas that aren’t dying, I have these angry, red welts that can literally bring me to tears in a split second, and look like something gross and communicable. In fact, the nurse has started to apply an antibiotic ointment to them, since the skin is starting to open in places. There are even a few on my neck, which is lovely, since next week I head to Washington D.C. to present my research at a national conference, hoping that everyone isn’t focusing on my diseased-looking skin. And I can’t shower too often, either (you’re welcome, Missoula!), because it hurts too badly, even if the water isn’t hot. Add that to the growing list of reasons why cancer treatment is super gross.

And yes, it’s true that I only have two treatments left. I am trying to take comfort in that, but really, when people try to remind me of that fact, I just keep thinking, “Seriously? They’re going to burn my fried, dying skin two more times? That’s not comforting! That’s torture.” Okay, that was a little dramatic. It isn’t water-boarding-level torture, but it does feel at least mildly mean.

This morning, as I walked into the radiation office, an older man who I see every day commented that today was the first day I didn’t come in smiling. Without a word, I pulled aside my shirt, just enough to show him my skin. He replied by showing me an identical patch. We both nodded silently, taking a little comfort in the shared misery.

Done.

Done. Done. Done done done done. Done done. Done. Done done done. Done. Done. Done. Done. Done done done done. Done done. Done. Done done done. Done done done. Done done. Done. Done done done. Done. Done. Done done done done. Done done. Done. Done done done. Done. Done. Done done. Done.

Well, kinda.

I had my last chemotherapy treatment on Thursday. My Last One. I’m trying to let that sink in, and feel the wonderfulness of it, but right now, I feel 20 weeks of chemicals and steroids coursing through my body. So while I am DONE with chemotherapy, it’s not quite done with me yet. And this last one was a doozy. If I didn’t know better, I’d think maybe they gave me a triple shot of the stuff. As it was, my doctor informed me that many people who get this treatment don’t make it through their full 12 weeks before their bodies can’t take it anymore. By week 8 or 9, they have to start trying other drugs. I can see why. It sort of feels like I got all 20 weeks, both drug combinations, in one last hurrah, just to give it that final kick. And with the last dose, I feel a return of almost all of the side effects, even those from the first eight weeks, when I was on a different drug combination: weird vision changes, heightened senses, queasiness, tingling feet, itchy hands, extreme fatigue, dehydration despite my best efforts, dizziness, agitation, inability to concentrate, extreme emotions, and other stuff I’m not recognizing because crappy is the new normal. So I can see why others don’t make it to the last dose of this combo, and I’m so thankful that I did. Because my other option was trying a new drug, and the new side effects that come along with it, instead of the ones that I know. And, worse yet, that other option meant suffering through those new side effects, knowing I’m only getting the second choice, or third choice of treatments, and worrying that it isn’t good enough, that it won’t work. I’m not sure I could have handled that.

So while I’m feeling like I’ve been hit by a semi right now, and can’t really celebrate being done, I am trying to recognize the smaller milestones that come with being done. I had my last Night Before Chemo, in which I lie awake and dread. I had my last Day of Chemo, watching the chemicals drip into my veins, noticing my body feel increasingly buzzy and poisoned and weak as the hour goes on, feeling my energy slowly drain. My last dose of steroids… ahh.. that’s a big one. I mean, literally, since I took an extra dose to help with the itching this week, but knowing it is my last? That’s a gift. So that means maybe my swelling has finally hit its peak. And my emotions can return to my regular baseline. Mostly, it means that I never again have to walk through the night after chemo, and day after that, in which I can’t sleep but am ridiculously tired. And Everything feels catastrophic and so incredibly sad. And I lash out at the people around me. And the lashing out makes me feel lonely and guilty, because I’ve pushed people away who are only wanting to be there for me, but they Just Can’t Know How This Feels. I don’t have to do that again.

And as I’m experiencing my side effects, I can tell myself that right now is the worst I’m going to feel. I haven’t been able to say that in 20 weeks. Almost 5 months. 20 weeks of always knowing I could feel worse at any time, even when worse is unimaginable. 20 weeks in which I went from wondering when it would finally sink in, when I would know what it really felt like to have cancer, to not really remembering what it’s like not to have cancer, and to wonder if I’ll ever feel healthy and energetic again. (Okay, let’s be real, I’ve never actually been known for having an abundance of energy, but it’s all relative, right?) But I can say that now. I can say that tomorrow might be better, and in a week I might feel pretty good, and in two weeks, I might be rejoicing in how normal I feel. That’s a realistic thing to say.

And just thinking that, just writing it and sharing it, that is such a gift. Such a wave of relief. I am getting myself back, starting now.

The neighbor

So, I’m pretty sure I alienated a neighbor the other day. One of the nice ones. Not that I have mean neighbors, but there are a few who are particularly nice. This one I think of as the “new neighbor,” even though I’m pretty sure she moved in about two years ago. I still have guilt for not bringing her a loaf of banana bread or something to welcome her to the neighborhood. I should probably let go of that, but it’s still what I think of when I see her, cementing her as the new neighbor. Anyway. Here’s what happened:

This last round of chemo was especially miserable. My nausea was so bad, it actually hurt. At one point, drinking water was painful. Not because of mouth sores or anything. More like, stretching my esophagus even for water was too much. To top it off, Brian had to go to Washington to pick up Miko from camp, so I was alone (save for one evening when a good friend saved the day by keeping me company). Mostly, though, I was unable to interact, or pay attention to even a book on tape, so just able to…. lie in bed. Ruminating. Feeling badly, and, quite frankly, sorry for myself. By Saturday evening I just had to get out of the house. My big plan was to go to the store and buy Pringles. Yes, Pringles. I had briefly seen some headline about Pringles contributing to cancer, and all of a sudden I had a craving. (Yes, I’m completely aware of how messed up that is. But really, I could only get about two Pringles down before getting sick, so chances are I’m no more cancer-y than before). Once I got to the store, though, it was more like a frenzy. All of a sudden, I was putting all sorts of things in my basket I’d normally never buy. (Ok, that’s a lie. I’d totally buy them, just not in front of Miko). It was my own ridiculous little rebellion against only being able to tolerate Saltines and water, and not even those sometimes. And then I added a few things like carrots and hummus to make myself feel better about it all.

Thing is, my little excursion was more than I was really up for. It had involved actually getting out of bed, getting dressed, driving to the store, and walking around for about ten minutes, and that’s more than I could handle. So by the time I got home and got out of my car, I was really ready to collapse. Cue my nice neighbor. She hailed me, asking me to wait a second while she put her dog in her yard. I swore under my breath. She bounded over in all of her non-cancer, healthy energy, her face full of concern. To be fair, she has watched me change from a normal (if a tad harried) neighbor who is in and out all of the time, to a slow-walking bald neighbor who rarely leaves the house except for semi-nightly walks in a few months, with no explanation, so I suppose she felt it was time to address it. Thing is, I was in no mood to address anything.

She immediately started in on how she could tell a lot was going on with me, and she’d like to help, do anything. A normal person would have said, “Thank you, that would be nice.” Not me. I started shooting down all of her ideas. Even when she asked what foods I could eat, I told her I couldn’t really eat anything, desperately hoping she couldn’t see into my shopping bag, willfully not acknowledging it when she did glance in the direction of the bag. I told her something like, “People want to cook for me, but it’s just too hard to find stuff I can eat.” This was a lie, really. Plenty of people have brought me wonderful meals, which I’ve enjoyed thoroughly. She asked if she could cook for my family, or babysit my kid. I deflected both. Could she walk my dog? No. In my defense, it wasn’t that I was opposed to any of her ideas. I was just so exhausted, my brain couldn’t think of the words, “All of that sounds so nice, but I’m really tired right now. Could we talk later?” It could only come up with terse rejections of her help, hoping she could go away, so I could collapse. She eventually did, and I ate my two Pringles. They weren’t worth it, by the way.

So, it looks like an awkward apology awaits me in the very near future. Perhaps it’s not too late for that banana bread, after all?

Round One

This is what chemo has felt like so far:

Day of 1st Chemo (I’ll call it Day 1): Mouth feels weird by the end of the treatment, can already feel the metallic taste in my mouth people talk about. I get nauseous fairly soon, but have an arsenal of drugs to deal with that. By the end of the evening, an episode of Friends is far too much for me to keep track of, and I just want to sleep.

Day 2: Between naps induced by nausea meds (which make me sleepy), I actually feel pretty good. I start plans to create an app to track everything. This will be comprehensive! It will help so many people! I will track which drugs I’m getting at which doses, what my nutritional intake is, how much I’m sleeping, how much I’m exercising, what symptoms I’m having, whatever else I’m doing for self-care, etc. This will enable me to graph my progress, and estimate what makes me feel better, and when to expect to feel worse. Why doesn’t this exist already?

Part 2 of Day 2: I’m tired. The app can wait.

Day 3: I’m not even actually sure what an app is right now. I certainly couldn’t make one. I just want to sleep. Taking Miko to her therapy appointment is the big activity of my day, and it wipes me out. Who needs graphs to map my progress, anyway? I feel like crap. Graph that.

Day 4: Feel a little better, but could sleep all day. I drag myself to the very end of Miko’s end of the year performance and try to act like I can engage in civilized discussions with others, but actually I’m just tired and emotional. And I just want my brain back, since it seems to have taken a vacation.

Day 5: Sort of like Day 4. Maybe a little less nausea. Maybe a little less tired. Still no brain function, still lots of emotion.

I’m hoping this day marks an upward swing, and I’m over the worst of this round. Because while it hasn’t been untolerable by any means, people say the effects are cumulative. Meaning, next time could be worse, and I could really use a reprieve before that happens.