Apr 18 2011

More week 1 radiation tales

Published by Reesa at 5:23 pm under health, irradiant, me vs. cancer = I win

Now remember, for you non-special-snowflake medical types, radiation therapy doesn’t actually hurt you. You don’t really feel any of the direct affects. Common side effects include fatigue, low blood cell count (so don’t hang around sick people), and a red discolored area or rash around the area receiving treatment.

However, when a tumor is near nerves or other sensitive areas, the pain issue is a different matter entirely. The tumor in my T12 spinal vertebra has been causing the referent pain down the right side of my back and spine, and the one in my hip/groin area is wrapped around the sciatic nerve and causing referent pain (shooting, stabbing, really agonizing referent pain) down the entire leg. These pains were what I was dealing with through the last half of the pregnancy, though at the time they were ascribed to other causes. And yes, it’s possible that someone should have thought sooner “Hey, previous cancer patient with pain in explicable areas but that inexplicably won’t go away with any of our treatments, maybe we should investigate the cancer angle more closely?” But just like before, the cancer was hiding within symptoms that had explanations in other body changes, such as the fact that many women get hip pain during pregnancy, though obviously not as badly as I did. And while the doctors I’m dealing with now are much better than before, I suspect that my explanation of “excruciating pain levels” were at first met with the more typically dismissive attitude found often in women’s health issues. I’m guessing that the OB didn’t clue into the idea that as a previous cancer patient with a quite painful cancer, I had a different perspective on the pain scale than someone for whom a c-section is the most intense medical procedure they’ll encounter in this life.

So, my radiation therapy hurts. Not due to the radiation itself, but the need to lie prone (or nearly so) on the hard table, and hold still while the treatment happens. Even though it is fast (only a few minutes’ duration), I needed to have a painkiller shot for the entire first week of radiation treatments. Even with all this, I still had to miss Wednesday’s session; the residual pain was still so bad from the previous two days that I could not make myself go again without a break. I of course called ahead and checked to make sure I wouldn’t be sabotaging my health by that choice, since I probably could have forced myself if it was a life/death decision. However, the doctor was reassuring and said as long as I didn’t make it a habit, missing one session early on to recover a bit wasn’t going to harm my chances of getting better overall.

I was only able to get through 2 of my 4 week-1 sessions without pausing halfway through due to the pain. This involved social uncomfortableness as I would start crying, then louder, then couldn’t stop and couldn’t hold still because the pain waves would escalate harder and faster. The staff at the RadOnc center have been simply amazing, never making me feel bad for causing what were obvious delays and complications at the end of their work-day, and chastising me for apologizing when I would break down emotionally. They continually reassure that they are here for me and whatever I need to get through the treatment is what they are there to help provide. It doesn’t stop me from feeling weak or helpless, but makes such things a heckuva lot easier to get through.

By Friday I still hadn’t noticed any real improvement in my ability to get through the radiation sessions, with Friday’s session needing two shots to finish rather than the one I’d been getting. Later that evening I figured out that Friday’s difficulties were mostly due to a miscalculation in my pain management regimen. They had changed the dosage on the pain patch I wear for continual relief (the oral meds are for the as-needed part and unfortunately are still needed quite a bit) and I had remembered the wrong day for changing out the larger patch. By the time I’d checked back through my daily medication notes and found the problem, I was well into a pain crash and the rest of my Friday was mostly lost to recovering from that. I felt angry, and stupid, at making such a mistake especially when I’m taking notes and keeping track and not-hurting is so important a goal. My step-mom did a good job trying to reassure me that those mistakes happen, even with notes; that she’s made similar mistakes; and so on. It was good to have her and my Dad down for a visit over the weekend, and friends have been doing a similarly awesome job of coming out and keeping company.

The weekend was quiet, and low energy; my Saturday was reasonably functional given current abilities, but my Sunday I was totally out of it for most of the day, only getting more coherent in the early evening. I expect my times of “getting things done” will shift (and continue shifting as factors change across treatment) and I’ll probably have some internal psychological adjustments to make accordingly. I’ve been used to either having the energy to do things, or not having it and having to push through and get stuff done anyway, and so having set times of day where things can more easily happen than not and vice versa I suspect will be a bigger change than it first appears.

Much more rambly entry but that’s what you get for today. I’ll try to remember to post happy healthy baby things scattered about as well as the more serious stuff. And questions, definitely ask them! Feedback, questions, things you’d like to know, something I mention that you want more details of…any of that is good, and will help me keep blogging, and writing, and processing, and healing. I’m also planning a “how you can help” post to go up within the next few days, so keep reading!

2 Responses to “More week 1 radiation tales”

  1. briton 19 Apr 2011 at 6:57 am

    I like your rambly posts! It makes me feel like I’m there having a conversation with you even though I can’t really be there for company. And it feels good for selfish reasons because I’ve really been missing everyone back home. People are so uptight here.

    I am so glad you have quality health care. My whole family being in the medical field, I’ve been very spoiled, and for a long time I wasn’t unable to understand why people were afraid of the doctor. My mom wore scrubs so much of the time that the smell of hospitals is comforting and reminds me of her. But volunteering in medical clinics made me realize how dismissive of pain and patient observations doctors tend to be, especially with women’s issues. But it sounds like they not only know what they are doing but they are treating you the person, not just the cancer. That’s also comforting to me.

  2. Reesaon 19 Apr 2011 at 9:47 am

    @Brit — Glad the rambling works for you! :) I hope you can at least get back to Texas for more visits soon, so far in my travels Texas still has some of the best people (if also rather quirky, hehe).

    Yeah having had the more dismissive care team the first time around on this I feel so much better on that issue now. It’s a scarier and more dangerous place to be in health-wise, but having doctors who seem to treat me as a PERSON with cancer is making a huge difference psychologically towards facing what has to come.