Compliance
June 21st, 2010
Imagine the worst sunburn you’ve ever had.
Now imagine that your doctor tells you to go lie out at high noon for a good hour or two. With baby oil on your skin.
This isn’t me. I’m not wearing a bikini & I don’t have that much hair. It’s just to evoke the feeling of burnt skin. Mine is actually much redder.
That’s what this feels like. I’m in my last two weeks of my 6 1/2 week daily radiation regimen. I’ve dutifully gone to all my treatments five days a week, caring for my tender skin with special lotions, eating the high protein diet, trying to stay hydrated. Up until now, the weekends have been a respite, giving my skin a chance to heal and not look totally scary. Then I face another Monday, bracing myself for another five days on the beam machine.
I carefully treated my skin on Friday, Saturday and Sunday. By the end of the weekend, I felt dread at how lobster-toned it remained. This morning, the pain and burning woke me up at 4:30 am.
When I arrived for my treatment a few hours later, I told the tech that it just didn’t seem right to keep going. It just didn’t make sense.
“The doctor’s here today. Let’s have her take a look at your skin and see what she says.”
Adding to my anxiety, today was Bolus Day. My radiation regimen requires every-other-day bolus usage, and the bolus actually makes my skin hurt more.
I changed into my awkward robe (which I no longer bother tying) and went into the beam room. I huddled up on a chair, waiting for my doctor to come in. She looked at my skin and told me that I could take a break if I was concerned, but that she actually wanted to see it get redder.
I was horrified. She offered me a prescription cream to help with the pain, but I could see that she was not particularly thrown by the worst burn I have ever experienced.
After she left to get my script, I talked to the techs, whom I like and trust.
“It might be worth taking a break if you could take the whole week off,” one said. “Really relax, don’t work, do nothing. It might help.”
“I have three kids,” I said. “That’s impossible.”
“Well, you don’t have blisters. Your skin isn’t broken,” said the other tech. “Honestly, the radiation is in you, so if you stopped now, your skin isn’t going to heal that much in a week. It’s only going to delay your treatment.”
I thought of how close I was to crossing the finish line in the last event in my Triathlon from Hell. I thought of what happens to marathoners when they hit mile 20, how there is nothing left to metabolize but muscle. I thought of how eager I was to get my life back. I need to keep going.
At the same time, I felt less compliant than ever. Screw it, I thought. I considered walking out of the radiation treatment altogether. This situation reminded me too much of what happened when my self-preservation instincts kicked in during chemo.
By chemo #4 (of 6), I had reached the point of asking my doctor, “You don’t seriously expect me to keep putting this crap in my body?” As it turned out, I almost stopped breathing during chemo #5, leading her to reduce the dose. I know my own body’s limits. Maybe my body only needs 2/3 of the treatment that other people my size need. Maybe I was going to face some other bodily awfulness by denying these instincts now.
I told the techs what I was thinking. They patiently listened to me air my concerns. Then I remembered the important statistic. Completing radiation lowers my chances of recurrence in my chest wall by 30%. I have to be able to look at my children and let them know that I did everything I can to keep this cancer monster at bay. And those are pretty good numbers in CancerLand.
I sighed, hitched up my robe, and climbed on the table. I was ready for another dose.
This entry was posted on Monday, June 21st, 2010 at 4:52 pm and is filed under Treatment. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.
Oh, kid!! You are bringing back memories of 10 1/2 yrs ago. I had 8 weeks of radiation after chemo and ended up in blisters…. Good news, I’m still here? Not to mention the permanent tan on my boob!!! The unexpected radiation (after a recurrence in the skin after surgery) totally fried my expensive boob job however. As Gilda Radner said, “It’s always something!”
Hang in there.
Sweetie, Hang on. Just hang on. You are right and maybe you don’t need the full course but you would feel guilty if you didn’t do all of it. Use the heavy duty cream they offer ( check to make sure it does NOT contain alcohol). Ask for EMLA cream . It is a little used numbing cream that was developed to prevent the pain of drawing blood in children with cancer. Few docs offer it although it would work for so many. ASK .
Love love and love
Ellie
Every steaming pile of shit you wade through, just remind yourself: beats the alternative.
Today? I’m bottling all my pee for 24 hours for the Phase I Trial team. Pain and indignity are endless, but the result is worth it. And the kids.
Good for you for standing up for yourself, and good for you for marching on. Thinking cooling thoughts for you.
Sarah
keep courage babe!
i remember, the last radio days was like the “too much”, but now, with the scientific knowledge, it’s the only way…
I worried too of my sunburn skin, and my doctor said it was “normal”, i hated this word, no it wasn’t ; and one day another (a femal doctor) said “oh, it’s a cute radioburn”. And i felt better, yes it burns, but in my case, it wasn’t uncontrolled.
Hold on, i know how much this last days will be heavy.
One day you’ll have healed, me promises you! Je t’embrasse fort !
Wow. Lani, I cannot fathom the kind of pain you’re talking about, though in a show of solidarity I do try to conjure Labor #2, when the epidural didn’t work and I felt like someone had my uterus in a vice and was torturing me every two minutes for a solid hour. I was crying out in pain, something I never ever do. I remember feeling ashamed of how much pain I was in. It was beyond anything I have felt before or since. I imagine what I went through is only a mere shadow of your experience; I mean, let’s start with the fact that mine only lasted an hour! But still, it gives me a point of reference to begin to understand “Please. Enough.” If you’re anything like me, it takes alot to get to that place. The fact that you were there speaks volumes about your level of pain.
I know you’ve said you are not a hero, you are just a woman doing what you have to do to beat cancer. But it is stories like this one that prove you have pushed beyond your own limits to survive… and to me, that is mighty heroic. I wish we lived closer, so I could be on your help list. I would be there in a flash. In lieu of that, let me offer you the next-best thing: friendship and admiration.
Ca c’est le courage, de savoir que c’est de la merde qui t’attends, est d’y foncer quand meme, pour les enfants. Ton mari, mais aussi pour toi meme, n’est-ce pas? Because FUCK cancer. tu as des choses a faire, des rires et des promenades, des cookies a manger. Apres. maintenant c’est de la merde, peut-etre pire parce que tu sais de l’avance que tu dois y retourner encore 10 fois…mais maintenant plus que 7 fois, et ainsi de suite.
Later, when the treatment is done and you’ll have done all you can, you’ll have TIME for tears, to pity yourself, right now, just survive this horrible “treatment”. hang in there, you have the finish line in sights, 7 of 30 treatments that are the last third of this eradication plan for the cancer. You’re the mathematician, what’s that? like maybe 88% finished? you can make it through the last few miles you CAN run the marathon.
You need some sort of hugs that don’t hurt (I remember sunburns)…maybe it’s a good time for silly stuff on youtube?
anyhow, wishing you cool-balm thoughts.
back to my health and family. we have COLDS…funny..
Girl good for you! It sucks but running for the finish line is the best:) Thank goodness for the kids. My girls were everything. Keep focused and stay strong. Ha you are STRONG!