Wednesday, July 24, 2013

Somewhat stream of consciousness

Padmadharini, Singhashri, Hridayashri, myself
I haven't written an update in a week or so, so this may be somewhat patchy. Actually I have been writing a bit, but mostly thinking about it more than doing it.

I'm finding it harder to describe my experience. Partly maybe because I'm talking much of the day. Not that that wears me out, but I am spending much less time alone than I used to, by necessity. There are so few things I can manage on my own these days, and that seems to change a bit every day. For example, a few days ago I thought my stamina was improving, I was able to walk a bit further. I was able to take a shower standing up. The last two days though it's gone the other direction. After taking maybe ten steps and I lie on my bed panting and wheezing for a few minutes, then I feel fine. Sometimes I cough a lot or hardly at all, or I have energy one day (relatively speaking) and the next day I have next to none.

Various people have suggested getting oxygen. It might not help but I will bring it up with the nurse Mary Jo next week. She mentioned last week that "young people" such as myself (I'm 49, i don't think of myself as particularly young, but I am a young cancer patient) tend to live beyond the 6 months estimated once someone is in hospice.

I've never moved my body so little. I've lost muscle tone. My skin is different. My body feels like a different body. Generally, my feet are cold, and my head and neck are warm. If I put the heating pad on my feet, it will feel good for a while, then my upper body starts to sweat. Mary Jo said many cancer patients have temperature regulation issues, so it's not hormonal as I thought. I have written for so long that I have no actual cancer symptoms, that all my symptoms were from treatment. Of course that has changed.

I woke up yesterday morning wheezing with my sacrum throbbing in pain. Before that I had been spared dealing with the shortness of breath at night. I tried some of the sublingual morphine. It wasn't dopey like I expected, actually rather mild. Dealing with shortness of breath is the most deeply unpleasant thing I have had to deal with on this journey. It brings up an instant feeling of panic in my body. Moving slower and sitting down when I have to walk more than a few steps helps, but after a lifetime of zooming around it's a hard adjustment to make.

Saw Misha for acupuncture last week (felt great), and my bed got sorted out, and have a wheelchair now, too. Still have little desire to go outside. In fact, I don't have much desire in terms of doing things. Mainly I want to avoid the newfound challenges inherent in stepping outside this apartment. I thought I might be more adventurous. Not at all.

Laura, Jules, Lisa
My three sisters were here from the four corners. That was good. They are all super sweet. I gave them all my old drawings (most are dated 1979 or 1982) which was a relief to me but seemed to make everyone else sad. Laura's going to stay for another while and at the end of this week, bring my mom up from southern California for a day or two. Also help me finish some paperwork.

Apparently email updates about me are going out now and then. I don't usually see them or know who they go to. It was pretty amusing when my sisters would attempt to pronounce the name of someone who replied - it would remain a mystery until I asked for spelling. 

You can also email me directly, though I may not have the energy to reply.  


  1. Great to see your words here today.
    Love to you from Iowa (and me).

  2. Reading these words again: "I have written for so long that I have no actual cancer symptoms, that all my symptoms were from treatment. Of course that has changed." These words cut to the heart, but change, like a door, or a fence, change also has two sides ... certainly the potential of two, or even more.

  3. So much change, so many adjustments. Glad your friends and family are around to help & keep you company. What a brave soul you are, I cherish your updates here. You are in my heart xoxo Sandy