Tag Archives: radiation

things unexpected

I’ve been forming a blog post in my head for the last several weeks about various unexpected things that I learned from this tussle with cancer, but a few things have stopped me. First, if I write that post how it keeps popping into my head, it feels like an end. And there are still things I think I want to say. Some of them I don’t know how to say yet, and some of them haven’t formed, but I can feel them there, waiting to come out. In any case, I’m not quite ready for the end of blogging yet. Maybe soon, but not yet. And second, I can’t really get past the first two items that would be on my list of things unexpected that I’ve learned, or decide if they are actually  separate. So maybe I’ll just talk about them for now.

Before cancer, whenever anyone went through something difficult, I liked to comment that if I had to go through the same situation, I would melt into a pile of goo, unable to cope. Not because I needed validation from whomever I was talking to, but more because my self-deprecating nature delighted in that vision of myself, quivering in a gelatinous blob. And also, it just felt accurate.

But now, that visual doesn’t feel right. At least, not anymore. Not to describe post-cancer Lauri. And that surprises me. I didn’t expect it. I didn’t expect that I would be able to handle everything that I have. I didn’t expect that the experience of cancer would both be as difficult as it was AND manageable. One or the other, but not both. I didn’t expect that chemo would be hard in the many emotional ways that it was. That the steroids and fear would leave me so agitated and on edge, that I would, on some days, take an anti-nausea pill as much for the emotional escape that sleep gave me as for the nausea. (This topic is another post, because it is a part of cancer treatment that goes undiscussed all too often, but it also needs to be said here, so I can’t avoid it). I also didn’t expect that I would be able to recognize that when it happened, and tell myself, “No more.” And actually successfully follow through with that. I didn’t expect that the hardest part of surgery for me would be the complete reliance on others, and not the pain or the drastic change in my body. I didn’t expect that if the worst-case scenario symptoms of radiation happened to me (which they eventually did), that they wouldn’t really slow me down. And I just didn’t expect, when I got diagnosed, that the experience of cancer and its associated treatments would leave me feeling so much stronger than I ever have. I mean, to be fair, I’ve always defined myself as a wimp, so stronger than that isn’t much…. but I do feel strong now. Very strong. And as a result, very happy.

The other item on my list of things I’ve learned is that although the world can be unrelentingly cruel at times, and it can, it can also provide balance through humanity. I know I’ve blogged about this to the point of sounding like a Pollyanna, but it’s just been my experience, and I can’t talk about my experience without being brought back to the beauty and care that people have surrounded me with. People have been so incredibly selfless and loving. Some of them were expected and reliable and comforting, and others were complete surprises, in a breath-catching way. But more and more I realize that maybe this is the secret to my newfound strength. It isn’t that I can handle anything that the world throws at me (And just to be clear, Universe, I really don’t want to test that out, thanks), but that I’m surrounded by such good people, that I don’t actually have to handle much alone. And the things that I do, the physical things, well, those are made more bearable by knowing I have the support of so many lovely people. Maybe my strength isn’t about me being an island of strength like I always imagined it to be, always admired in other strong people, but about allowing myself to access the strength and help of the people around me, and in keeping that circle filled with loving, reliable people.

And maybe that’s what I want it to be. I really don’t want to walk away from this with an arrogant swagger, feeling prideful in a “keep heaping it on, World, I’ll keep going,” kind of way. That isn’t helpful to anyone else, or to me, really. I want to feel strong in my ability to lean on my people when I need. In respecting my individual limits by my ability to say, “No, I cannot take on another project/client/assessment/whatever-the-job-is,” without feeling like a failure. I want to take pride in the strength of finding balance in my life, giving as much priority to the enjoyment of the people and places around me as I do to the tasks ahead of me. And that’s unexpected for me. I thought that the feeling that came from finding myself capable would be enough. But I’m learning that it’s not. I’m learning that my version of success is embracing my inter-dependence with my circle of people as a path toward true fulfillment. I’m still working on that, but I’m getting there.

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.

Radiation (Or, I don’t have cancer)

I realized I have yet to write about radiation. This feels significant, because it is almost over. I only have one more full treatment. After that, they just radiate my left mastectomy scar five times. Then I’m done. With every other part of my treatment, I write and write about every move, getting my worries, concerns, fears off of my chest. But with radiation? It’s barely gotten a mention.

This is a case of No News is Good News. Basically, if some doctor says to you, “You have cancer, but can pick your treatment (assume they all have the best success rate): chemotherapy, surgery, or radiation,” ALWAYS CHOOSE THE RADIATION. (This will never happen, I’m pretty sure. But just in case it does.)

Here’s what happens, every day:

I go into the office. I don’t even check in, because one of the receptionists says, “Good morning, Lauri! I have you all checked in!” (Okay, so they always pronounce it “Lori,” but whatevs.) Then I sit down for a minute max, until one of the techs comes out, and smiles at me as if I’m the bright spot in his/her day. They take me back to the changing rooms, where I take off my shirt, put on a gown, and head back to the radiation room. Here, I’m given a warmed-up blanket, and lie down on a bench with my head comfortably supported. I hold onto bars above my head, and allow the techs to push and pull me into the exact right position. As they are doing this, they ask me about my new puppy, my classes, if I’ve been hiking that week. They tell me about what they did over the weekend, and maybe we discuss Downton Abbey. It’s all very pleasant and congenial. At some point someone says, “88.4,” and someone else says, “.5 to the left.” I’m not sure why, I’ve never been concerned enough to ask. Then they leave the room, and I suppose the machine over me zaps radiation onto the exact dimensions they have specified, making the skin on the upper left quadrant of my torso, in an exact rectangle, a little darker shade of pink. Then it rotates around and zaps my back. I’m sure that’s pink, too, but I can’t see it. Once that’s over, they come in, and make some readjustments, so they can zap me more superficially, I think to protect my heart, but still get my scar, where the cancer cells can hide. I’m not really sure. Then I’m done, and I unwillingly give up my warm blanket. The whole thing lasts about 15 minutes, including the time it takes to change my clothes.

I keep meaning to look up exactly what is going on, so I can explain it better, but here’s the thing: I don’t really feel a need to. This is huge for me. If I am looking something up in as many sources as possible, that means I’m anxious. Maybe I’m not feeling well, maybe I’m afraid I’ll be feeling horribly soon. Maybe I’m afraid for my life. I research to try and comfort myself, arm myself with as much knowledge as I can. But I’m not this time. I’m blissfully ignorant. I’m skating through radiation with very few worries. And in fact, I’ve had it pretty easy. Some people get such bad burns that they blister. Some people get really raw skin. Some people get really fatigued. In the last week or so, I’ve started to get this weird burn/rash thing that feels like a combination of a sunburn that extends down into my muscle, and an itchy rash that feels like it would hurt to scratch, and has random bouts of a stinging sensation. It hurts a little more every day to lift my left arm above my head, because the tissue underneath the skin is pretty swollen and irritated. I also get tired pretty easily, which is poorly timed with the beginning of the semester. But compared to chemotherapy? Or recovery from surgery? I am fully functional. I am not throwing up. I am not highly emotional, or so tired that walking to the living room is a task. In fact, I go hiking pretty frequently, and even tried snowshoeing recently. I feel better than I have in a year and a half, when I started feeling so tired, when I’m convinced my cancer started to grow.

This feeling was validated by my  medical oncologist last week. I went in to talk to her about the anti-hormone therapy I will be starting in a few weeks. My type of cancer responds to estrogen, so for 5-10 years, I will take a pill that will block my estrogen receptors. This will reduce my chance of recurrence to one that is almost equivalent to that of the general public. I asked her when the  clock started for me to be able to say I’m cured. She said that unfortunately, with my type of breast cancer, I can never really say that. Recurrence can happen 20+ years later. BUT, I can say that for now, I have no cancer. My PET scan in the summer showed that the cancer had not spread beyond the lymph nodes. Since then, I’ve had chemotherapy, which took care of all of the cancer, except for the small bit that was found at surgery — and that’s been removed. So there is no reason, no indication, to say anymore that I have cancer. I had cancer. I do not have cancer anymore.

I don’t have cancer. Now it’s not just a feeling. Now it’s a fact. I think I need to repeat it a few more times to let it sink in.

 

Good Riddance, 2013

Well, we’re (obviously) at the end of 2013, and I’m not sad to see it go one bit. I usually have a strict rule against wishing any minute of my life away, but this year won’t be missed. It was memorable, and I learned a lot. I’m not sorry I went through it because of that, but I wouldn’t want to relive it, at all.

Christmas was bittersweet. I loved seeing my family. I loved having them around me, feeling their warmth, knowing we were all taking a little comfort in being with one another at the end of this wearying year. But I missed my brother. I knew his absence would be strongly felt, but I couldn’t get exactly how that would feel until I was in the situation. And while I enjoyed my time at Christmas immensely, I needed his mischevious smile, his constant teasing, punctuated by looks of utter softness and love. Or I wanted them, anyway, and their absence left a hole. I know from experience that the hole will fill with other things, feel less raw, as time goes on. I know that in the future, missing him will mostly feel like reminiscing about the things he brought to the table that I loved so much. I know that next Christmas will be easier. And none of that knowing takes away the present feeling of grief, so I’m just letting myself feel it.

All this grieving, though, it makes me tired. More tired than I already am from the surgery, and the heart problems, and the worry about radiation. Because it’s not just about Mike. It’s about all of the insults this year has brought. All of them, added together. It creates in me this naive expectation that 2014 will be better, as if at midnight, something clicks and my luck changes. I know that’s not how it works, that December 31st and January 1st are actually only separated by a pretty arbitrary date line, but I want so badly to think all of this ends within a matter of hours, and my life drastically improves once the clocks strike midnight. I mean, not just for me. Actually, mainly not for me. Since Miko was six, we have lost five people in our close circle. Five people in five years. I want her to know a year with no death, without the next year making up for it by bringing two deaths. I want to look at my parents and not see the grief and the worry in their eyes. I want all the people I love to just be able to enjoy whatever is occupying them from moment to moment, without the obstacles of mourning or fear.

But I can’t control that. Or much of it, anyway. I can start radiation on the 2nd, and dutifully complete the entire regimen, or as much of it as my body allows, to minimze the chance that they will have to mourn me as well. I can try to be present in my own moments, allowing myself to feel whatever those moments bring me. I can be cognizant that it is important to reach out to my family and friends more often, even if it’s not in my habit, and even when I’m frustrated with them, because I don’t know how much longer any of us has. I can say yes to experiences more often, like my brother did, because who regrets a fuller life? I can be grateful for all the good little (and big) things, even (or maybe especially) when they’re brought because of the bad stuff. I can give my time and energy to only those things, experiences, and people who sustain me, help me grow, or make me feel loved. I can offer love when I see grief in the faces of those I love (or even just like), since I can’t protect them from having to experience it in the first place.

And I can hope. I can hope that the radiation does its job, that 2014 offers my circle a repreive from sickness and death, and that by the end of the year, we’re all a little sad to see it go.