Ringing the Bell

Well, today (Thursday) is finally my last radiation. As I've seen people do online on their last day of chemo, I learned there's a bell I'll get to ring when it's over. (There doesn't seem to be one where I do chemo). It's a little bittersweet. If I didn't have to do chemo again it would feel like it is more of an accomplishment and a more exciting thing to ring the bell as the end of radiation would have been the end of treatment. And I wish it was. BUT, I'll ring it and enjoy it because NO MORE RADIATION. 

About a week and a half ago, things started to get awfully uncomfortable. Turns out that was nothing. There's a bright red square covering the right side of my chest where I've been receiving radiation and by last week my skin was thin, like tissue paper. I went to pick what I thought was a drop of a face mask Claire and I had done and when I pushed at it, my skin just pushed away. I was momentarily horrified. In the week and a half since, I've amassed several knicks and scabs across my chest -- it seems every time James touches me, my skin breaks. Kind of like when you have a blister and it pops. Those don't really hurt though -- they itch more than anything. And the radiation seems to keep them from healing. 

By late last week the skin under my arm had gotten brown and leathery and started to peel. The skin underneath is soft and pink. The whole area is tight and dry. I can only compare it to the feeling when you have a scab on your knee or elbow and have to bend and stretch it or when your lips are painfully chapped and your lips crack when you smile. But they said my skin was doing great for this stage, better than many. A couple of weeks ago they gave me some ointment and also said I could use this Boiron Calendula Cream. A friend who is a year out from radiation dropped some off to me. Once they said I could use that, I also started putting this natural, also calendula-based bath oil on the area gifted to me by a friend who co-owns the company, Clary Collection, every time I shower. I had been using it, especially on my scars, since I healed from surgery, until I started radiation and they asked me not to put anything on it. While it specifically wasn't approved by the doctor, once they said I could use the cream I took it upon myself to decide it was okay, being all natural (and handmade in small batches by a small, women-owned business -- plug, plug!).  I think this was a big part of my skin staying in good shape for so long. 

Just to insert a bit of humor into this post, here is a picture of James on New Year's Day, who asked to see my "special lotion" -- Clary's balm. Daniel and I were in the middle of eating dinner so I stupidly handed it to her and off she went. I found her like this a few minutes later. I think her skin is still nice and soft from it. She asks for it almost daily. 

ANYWAY, last Friday the nurse gave me some packets of powder to make a soaking solution for my skin once it breaks. She said it as if it was inevitable, but part of me still thought, much like when I reached two weeks after I started chemo and hadn't yet lost my hair, that I would be this magical freak of nature whose skin remained intact. Just as my hair started coming out in clumps on day 15, the very next day a quarter-sized area of red, wet skin appeared in my armpit. We had been at my sister's house for a few days because our power was out (totally saved our lives) and, as we unpacked the car Saturday evening back at home, my armpit area was definitely hurting more than usual. Kind of burning. Stupidly, I was surprised to find the broken patch of skin when I changed my clothes. 

So, I started the soaks. You mix the packets with water, soak some gauze, hold it to the area for 15 minutes, then let it dry thoroughly. I've been wearing a lot of tank tops to make this easier and sitting by the fire so I stay warm. Each day I wake up and the open area is a little bigger. They examined it Tuesday and said they didn't think the area would get too much bigger but that it would get worse for the next week before it starts to heal (seems a little contradictory, but what do I know).

Tuesday night I took Claire and a friend to a really fun circus play in Detroit (super fun, good for all ages and headed to you next, Chicago friends) and, as I was walking during intermission, I could feel the moisture and thought, "That doesn't seem good." When I got home the area had doubled in size. Today, Thursday morning, it's several inches long and a couple of inches wide -- it looks like what you imagine when you picture a burn victim. (And, as more than one person has pointed out, I know this isn't a "burn" even though I keep calling it that -- it's just the best way to describe it). It's really uncomfortable and I seriously can't imagine what it's like to have a real burn over a large portion of your body. 

It makes me feel like a bit of a wimp, but I'm taking some meds to ease the pain a bit and I'm just trying to focus on next week -- when I hopefully will turn the corner and begin to heal. Part of me wants to lay in bed and sleep until that day arrives, but I can't do that. Or at least I won't. While I'm hopeful chemo won't be as brutal this time around, I know I've got lots of days in bed on the horizon so I'm going to be as mobile as I can while still being smart and careful. 

I realize all of this detail is perhaps unnecessary, but I've got my ladies in mind who are embarking on radiation in the coming weeks. I won't horrify you all with a picture of what's happening, but will happily share it with them, should they want to see it. I saw pictures too and, though it doesn't really prepare you for what's to come (and who says any two people will have the same experience anyway), there's less of an element of surprise when it happens. Someone yesterday said they heard radiation is worse than chemo. I don't know that I would say that, but this couple of weeks is definitely proving to be a little tougher than I thought it would be. 

I'm trying my best to keep my arm elevated and away from my body, as friction has a lot to do with why this area gets hit the hardest, but you can imagine how easy that is while trying to do ANYTHING, especially when you're right handed. If that means I need to do less and ask for help more for a week until I turn the corner, fine. Daniel is on board and doing a great job of taking care of his ladies.

I really am sick of going to the hospital every day, as lovely as the gang who has been taking care of me is. Since Friday they've only been targeting my scar area, which is called getting a boost to that area, so the appointment is fast. The radiation itself is about 30 seconds, which is great considering it feels like my armpit is on fire when I raise my arms above my head. It's also been nice to know the worst has been done to the broader area. Either my breathing has evened out or I've gotten used to it and I haven't had any issues swallowing, etc., which I guess sometimes happens during radiation. I go back in two weeks so they can see how I'm healing and I guess that's it. 

Next week I'll have my regular Herceptin infusion on Thursday and I imagine I'll then find out when I start chemo. I'm guessing April 13, as they said four weeks, but I'm not positive. I'll also head back to the plastic surgeon in two weeks to start refilling my left side so I can even things out a bit. I'm thankful it is winter, a time of bulky sweatshirts and coats to hide my uneven lumpiness. I imagine I should feel and look a little more "normal" in plenty of time for T-shirt season. 

In the meantime, James turns THREE on Saturday. I feel like she just turned one. It's insane. We have invited aunts, uncles and grandparents over Saturday for a little lunch gathering. I'll have some snacks and will order some pizza to make it easy on myself. James has requested pink and purple cupcakes so I'm going to try to make her dreams come true, using a recipe from one of my favorite baking sites, Sally's Baking Addiction. Claire's cousin will spend the night Friday so I think I should be able to enlist them to help make it happen. 

Thank you for the continued calls, cards, notes and gifts. It's hard to believe it's almost been a year since I first felt something was "off." Thank you to everyone for hanging in there with us.