I had my last radiation treatment on Tuesday afternoon. It’s Friday morning, and I’m just now sitting down to write this post. When I got home from that last day at the hospital, I wanted to immediately start writing. But then I realized that I had no idea what to say. I mean, I had so much to say, that I didn’t know where to start. I still don’t. But it’s Friday morning, so I figured it was time to try.
Tuesday was an Event. I was giddy about it, eager all morning long, felt excited like a first date for my appointment. I had everything planned out, how I was going to bring my gratitude and spirit into that last session: I made cupcakes with yellow frosting and “GO, PACK, GO!” in green letters; I wore my Green Bay wrist band; I brought Carle a balloon and a card, but also a bouquet of yellow and white flowers wrapped in green paper; and most importantly, I brought out the big guns. I. Wore. My. Cheesehead. In other words, I was not fucking around.
When Carle came to get me from the waiting room, the look on her frozen face was positively priceless. She looked overwhelmed by the ridiculous picture I’m certain I presented, wearing a cheesehead and a hospital gown, flowers and cupcakes at my side. I wish it could have been a hidden camera moment. As it was, I’m sure the guy on the couch next to me, who was just starting his treatment cycle, wondered what this radiation business would do to his sanity. He just looked at me, unblinking and dry, and said, “The hat’s a nice touch.” I think he’ll be fine.
Once Carle and I composed ourselves, she started walking me back to the radiation room. We turned a corner, and I saw something that it took me a few seconds to understand. There’s a room off to the side, and from the doorway protruded this arm, holding an absolutely gorgeous bouquet of flowers, and a sign that read, “I would throw my pie for you, Lily-Rygh."
(Yes, I realize my name isn't technically on the sign. But whenever I try to explain my name to new people, I say to think of Lily like a flower, and Rygh like a truck. Flower truck. Hence the pickup truck in towing a flower. Hence, my name.)
Those of you who watch Orange is the New Black understand the significance of this sign. Crazy Eyes, in her bid to make a prison wife out of her Dandelion, throws a piece of cherry pie at someone she perceives as a threat. When Piper/Dandelion tells her that while she appreciates her support, she is not, actually, her wife, Crazy Eyes responds by simply exclaiming, “I threw my pie for you!” It’s as though it’s a done deal. I mean, once a woman throws a pie for you, it’s all in the bag: marriage is a sure thing.
Kara and I have been watching Orange together, often while my breast is covered in canned pumpkin, and like all fans of the show, we toss that line around in conversation liberally. So it should come as no surprise that it was Kara’s arm holding that sign. She surprised me and took the afternoon off to meet me there, coordinating it all with Carle. I damn near started crying when she stepped out of that doorway. Several members of the radiation team were milling about, and somebody – I still don’t know who it was – took the cupcakes from my hand so Kara could wrap me up in her arms. She whispered how proud she was of me for the way I’ve handled this whole ordeal, and then walked with me to the treatment room. I felt like a queen in a very fucked-up court.
The actual treatment was almost anti-climactic. For the last time, Carle and Sara shuffled me around on the table, maneuvered everything in to place, and left me alone with my breast and my thoughts. I was thinking about the fact that my boost site – the area around my scar that was targeted during the last 5 treatments – is a much darker pink than the rest of my breast. But luckily, my nipple is being spared. After the weirdly intense pain it was in for a good couple of weeks there, I’ll take whatever small blessings I can get.
And the nipple thoughts reminded me of Elliot, a guy who was training with the amazing Providence Portland radiation team when I came in for my mapping session. Sara was running the show that day, and the three of us were discussing the fact that my nipple now points vaguely sideways from losing the supporting tissue under it to my lumpectomy. And Elliot casually starts telling me this story of shaving his chest in the shower one day and accidentally shaving off his nipple. Shaving it off! As in, he looked down at the bathtub floor and wondered where all the blood was coming from, then looked closer and saw his nipple laying there. Detached. Just, you know, there. Sara started cracking up and couldn’t believe he had never told her that story before. All I could think about was the fact that I instantly knew three things:
- This guy shaves his chest;
- He's clearly not very good at it;
- This is gonna be really weird.
I wasn’t disappointed – it was definitely weird – and Sara and the whole gang continued to provide all the weirdness and laughter and support and expertise I could have ever hoped for.
Oh, and Carle came up with a real gem for my last treatment song. I can't even.
When all was said and done and it was time to leave for the last time, I gathered all the hugs I could from the whole team. Carle, Sara, Erica, Barb, Kevin, Dawn…everybody seemed to be hanging out (hopefully for the cupcakes!), and it was great to get to thank them all for being so good at their jobs, and just for being such good people. I felt relieved and excited and blessed.
And I continued to feel all of those things, pretty much up until Wednesday morning. That was when I realized that the party was over. That now it was going to get hard again. It sounds and felt kinda stupid – I’m here to tell you, 6 weeks of daily radiation is plenty hard, and not at all the kind of picnic I ever want to attend again. But there was something freeing about it, about the process. Because the process was planned and prescribed by somebody else. Once I made the decision to have the treatment, to subject my body to the risks of all that radiation, my only job was to show up and take care of my body. That was it.
Now that the radiation is done, I really have to start to focus on what may come next. I have to go back in to decision-making mode, and that scares me. I have to decide, once and for all, if I’m going to absorb the risks of Tamoxifen, in order to try to prevent more breast cancer, or if the risk of other cancers resulting from the Tamoxifen is too great. I have to start gathering more information about how often I need to have mammograms going forward, and how to weigh those risks. And I have to factor in the results of my BRCA genetic testing, which I will be getting next week. Those results could be game-changing, in that if I test positive, the most logical course of action is to have my ovaries removed. More surgery. More recovery time. More risks to weigh.
My body has been so tired from the radiation. I’m starting to get a bit of my energy back; I still take naps every afternoon, but I recover from that down time faster. I can see a very faint light at the end of that tunnel. But now my mind is starting to feel exhausted, from all the next steps to contemplate.
And I wonder how to define my own version of “long term,” in this planning. I had assumed that by living a healthy and clean lifestyle, I was going to avoid the cancer plague that claims the lives of my family members so young, often in their mid-late 50’s. “Long term” meant one day becoming a blue-haired dingbat crazy cat lady with questionable stories and a negligible attitude. But now I know that despite my best efforts, I developed cancer at only 42. And I wonder what “long term” means now. I don’t think blue hair is realistic for me anymore. I wonder if what I should really be gaming for is a fantastically great 10 years of wicked vitality and vibrant energy and excited exploration. Anything above and beyond that is just the cherry on the ice cream sundae. Maybe my family history is simply going to be a part of my history, whether I like it or not. And maybe it’s naïve and silly to ignore it when I have what are sure to be some lengthy and complex questions with my oncologist in the coming months.
I don’t know. I don’t yet know how to separate what I want for myself from what I think might be practical to expect. Because I would love to be a sometimes-cranky old lady, the kind who waves her cane at the neighborhood kids for cutting through the flower garden, but whose idea of punishment would be less about smacking them with said cane and more about forcing them to sit down and listen to the story of the time I climbed the fence outside Prince’s house to take pictures of his windmill. I want to live a long and healthy and strong life. I want to feel powerful in my body, and I want to free my mind from the constant nagging, the waiting for the other shoe to drop. But I don’t know if that’s possible. And there’s a “quality vs. quantity” argument to be made somewhere in here.
But let me be clear about one thing: my gratitude has never once wavered. I am so blessed that my cancer was found so early, so tiny. I’m so lucky that I was able to avoid the ravages of chemotherapy. I’m so grateful that my breast, while misshapen and discolored and peeling, is still a part of my body, and that I have every reason to expect it will heal and recover fully. I’m thrilled to have had a radiation team filled with smart and funny and nuanced people, and a bang-up treatment team in general. I’m grateful that it could have been so, so much worse. And it wasn’t.
And I’m grateful that while I’m unsure about what comes next, I’m finished with this piece. I’m done with radiation. I’m not done with the pumpkin or the peeling or the lazy eye nipple or the fear. But I’m done with radiation. 30 of 30. And as far as I can tell, I’m still standing.
Lily-Rygh...Oh my goodness....I just finished your blog. Although it is almost 2 years after your last post, I'm hoping you see this. I found it today while looking for personal information about wimen who have had radiation treatments. Not the kind the medical community puts out there. That's not personal enough to tell me what I need to know. You sure as hell did! I have several things in common with you. I had DCIS, I had a lumpectomy April 21st,(left breast) having radiation starting within the next 2 weeks. And will be taking tamoxifen. You are so right in that no, we don't have to do chemo, but that does NOT take away from the torture our body goes through. Your blog has opened my eyes and has helped prepare me for what I have to look forward too. I also have very fair skin, a redhead by birth. So I do not look forward to the burning. I have a couple of years on you though, I am 60. The fatigue is something that I hope I can manage. You being active and it still hit you so hard, I live a very sedate life. So it will kick my ass. I need to stop, I could go on and on. Just know that you have helped at least one woman with your blog, ME! I only wish you would have continued it. I will be reading it over and over. I hope this finds you well. Thank you!!! MaryReplyDelete
Ditto. 2 years later still. 53 with DCIS and just had my surgery. Will be starting radiation in the next month. Thank you for your honesty and willingness to tell it like it is. Physically AND emotionally!ReplyDelete