Apr 19 2011
Radiation treatments are Monday through Friday, going through at least the end of this week and probably next week as well. Monday was difficult, as of course I’m still hurting, but also emotionally difficult to make myself go when the first week had so little tangible progress. Monday’s treatment wasn’t quite as bad physically as those that came before. I still got a pain shot, but didn’t have to interrupt the process and only cried at the end. The emotional load hit and I cried for a bit after it was done before making my way home. My mom, in town Sunday through Tuesday, said I was moving a little better around the house Monday evening and it seemed to be true from my own observations.
I’m also sleeping a lot more, which merits clarification as sleep has been such a huge issue. I am still waaay in the depths of sleep deprivation, since I haven’t gotten more than 3 hours of sleep at one time since nearly 3 months ago. The pain has kept it impossible to stay asleep for longer than that, as well as made what sleep I was getting very poor quality and mostly twilight sleep rather than true REM restful sleep. Since radiation treatment started (and a few times while in the hospital as well), the sleep length hasn’t significantly changed; I still get anywhere from half an hour to 2.5 hours at a time before awakening. However, the quality of those small chunks has definitely started to slowly improve. In the past three days or so, I’ve been trying to lay down for as many 2-hour time chunks as possible, and managing to sleep for some of all or each of those times. So far it seems to have manifested as a little more mobility and ease of being in a sitting position; hopefully there will be an increase in energy soon as well. I’ve been told I have a bit more color in my skin the last day or two which one presumes is a good sign.
Today was a frustrating day for radiation treatment. Tuesday is the day I’m supposed to see the doctor and check in on the process. However, the doctor wasn’t available today so I spoke to the back-up doc. This is always frustrating for me, since my situation is fairly unique and she couldn’t answer any of the questions I had, including new symptoms in sensation of the hip and spine region since radiation started that I’d really like more clarification if possible on. Getting the answer “well it’s probably just the tumor” is massively unhelpful, since the tumor doing stuff on its own AFTER treatment started seems like it would be a huge cause of concern. The tumor reacting to the radiation, or changing size, releasing nerve pressure, SOMEthing that’s actually connected to what we’ve been doing, would be way more nice to hear than “oh six treatments is too soon it’s just the tumor doing stuff” — especially when someone else has said that there might be tangible changes by the end of the first week or so.
I’m also losing weight too fast again; 10 pounds in two weeks. And I’m eating multiple meals a day. I should probably go back to more protein shakes like I was doing right before birth. One of many steps that I need extra assistance to achieve and therefore doesn’t always get prioritized since there’s so much else to get done.
So I also didn’t get an answer to the question of whether they’ve been taking more films to monitor progress of the treatment. Normally they take one a week, but I pointed out at the beginning that my insides were changing rapidly since I’d just given birth and would more frequent checks on positioning be a good idea? The doctor agreed that checking every other day would be wise and made that recommendation, but I haven’t been able to determine from the sessions themselves whether they’ve actually been following that recommendation, and substitute doctor didn’t seem to understand my question there either.
Tuesday’s treatment itself was a marginal improvement over Monday’s. I still needed the shot but only cried from pain of holding still at the very end…it’s possible I won’t need the shot by the end of this week if things continue to improve. However, there were a few tears of frustration in trying to communicate with the back-up doctor, so hopefully I can arrange to meet with my regular radiation oncologist before tomorrow’s treatment and get my questions answered more directly.
I wish I could talk more about the emotional impact of all of this. It’s messy and mixed up and it feels like there’s no one around who’s really a safe target for listening. People I care deeply about feel more and more distant each day, and it’s not just *my* difficulty in talking that contributes to that feeling. It’s like watching sand fall through a funnel, trying to hold onto grains of connection and intimacy and expressions of caring as everything falls further into constraints of daily routines. Sure stuff is getting done, life goes on; but it feels a lot the last couple of weeks like I’m a ghost moving through my own home, stepping lightly through lives so that I don’t cause unwanted mess, attempting to avoid or hide the unpleasant emotional moments or shared connections so as to not cause more problems for those around me and therefore missing out on any closeness, as others follow their own patterns of avoidance and routine. This isn’t a plea for reassurances that “oh noes, that isn’t so atall”, so don’t fall over yourselves leaving those types of comments. It’s a nearly impossible situation to articulate clearly or understandably inside my own head with a lot of thought put into it, much less externally in this more limited discussion medium. But emotional glunk is part of the cancer process, so I’ll do my best to write bits about that as it floats to the surface along with the other things happening.