Apr 19 2011

Radiating into week 2…

Published by Reesa at 6:34 pm under health, irradiant, me vs. cancer = I win

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.

2 Responses to “Radiating into week 2…”

  1. Mary Basson 22 Apr 2011 at 8:46 pm

    Daughter,

    I have lived the “alone” thing and the “alone among others” thing for years and still do; and will for the rest of my life. When those around you don’t have your diseases and resultant physical problems there is no way they can be as aware and as understanding as we might wish they could be. They have never had the super-intense unrelenting pain nor the extreme weakness nor the crushing fatigue. The healthy ones just can’t walk the same road. No matter how they may love us, no matter how caring they may be, if they haven’t walked that road then there are no matching points.

    Through the years I’ve hidden pain, both physical and emotional, I’ve hidden fatigue when I could, I’ve hidden the inability to do things that the healthy people around me could do and more. I’ve done this to spare them worry and concern. And I continue to do this even though it makes things more difficult for me. It would be easy to say, “Stop doing that” but it’s not that simple. It doesn’t solve everything.

    When one is chronically ill and therefore in need of various types of help it impacts our loved ones and everyone around us. Even though the disease has changed things for us more than for anyone it changes things for the others too. We feel badly about needing help and about our condition causing so many changes in daily life for others. We feel we have done something we shouldn’t have even though it is something beyond our control. We apologize.

    There are times when we swallow our pain as best we can and go on as best we can. Then there are times when the pain has such a grip on us that it speaks through us and for us and usually speaks sharply. With that we feel guilty. We apologize.

    We don’t even put ourselves first except when we have to: when we need to sit or lie down because we can’t go anymore, when we need someone to prepare food for us because we can’t stand long enough to do it, or when we need someone to fetch and carry for us due to our fatigue or weakness, etc. And most of the time, in these incidents, we apologize.

    You and I have apologized to medical personnel for delaying them, for being emotional in front of them, for possibly making their jobs more difficult. They see and go through this with others — not just us — and somewhere in our minds we must know the likelihood of this yet we say “I’m sorry”.

    On top of all of this, we feel walls closing in. We feel separated from “real” life. We feel set apart from those around us and sometimes more so from those who should be the closest to us. We feel at times like we almost don’t exist. And, in a way we don’t because we are not the people we used to be and we don’t live life the way we did.

    Others cannot understand our losses; our daily losses; our weekly losses; our monthly losses. For the most part, they go about their lives as usual. Their bodies have not betrayed them. Disease has not physically changed them. We live among them but we are no longer like them.

    I am saying these things to you to let you know that, at least in part, I understand at least some of what you are going through — physically and emotionally. These is much more than I have discussed here due to the constraints of time and space. Among (and unlike) most of the people in your life, I know. I know.

    Love,

    Mary

  2. Gabyon 11 May 2012 at 10:01 am

    I sadly never met Reesa, but I have been deeply moved by her writing. What a courageous, honest, passionate and compassionate person she must have been. My thoughts are with her family and friends on their loss.