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.  

Saturday, July 13, 2013

Hospice first impressions/The girl with the temporary dragon tattoo

Met with some of the hospice folks this week - an intake person and a social worker. They are super cool people. Here the focus changes to keeping one relatively happy and comfy, rather than merely alive. Also, they come to me, which is AWESOME, and they're available on the phone 24/7. I'll meet the nurse on Monday or Tuesday.

Kaiser hospice provides various visitors and some kinds of equipment, but no...I don't know what to call them. Caregivers, aids, workers. In other words, the hospice nurse and some other people are going to visit and talk to me at specified intervals, once a week or whatever is decided, to help with medications/pain/any issues that arise, etc., but they're not going to stay for 5 hours and read me stories or administer morphine. (They can arrange this, which I would pay for.)

They delivered a hospital bed a few nights ago. It's small, looks and smells very hospitaly and plasticky. I didn't sleep that well on it 'cuz of this...layer that's on top of the mattress. It has these sort of pockets that fill with's like lying on a carpet of hacky sacks. I deflated it a bit, we'll see. Being able to easily sit up in bed is great, which is why I wanted it.

Just got my feet rubbed by my niece Paris, and the catering around here has been excellent. Kathy has made spring rolls, spinach and ricotta ravioli, hummus plates, quesadillas...

I'm feeling that I have a little bit more stamina, meaning that I can stay vertical a little longer. My mouth seems not so dry. Perhaps much of what's gone on in the last few months really was radiation fatigue, rather than a sign that I have 8 toes in the grave.

Morning pills, hope the dye they use isn't carcinogenic...

Something to do. There's a moustache of normal hair
you can see the five o'clock shadow of on my neck.
Wonder when hair will grow back?

Kathy and Paris making way for new bed

Tuesday, July 9, 2013

Doctor visit

Jules and my sister Kathy and niece Paris came with me to see Dr. Nelson yesterday, wheeling me around in a wheelchair which helps a lot with the breathlessness I get from walking. Still, just getting dressed to go out continues to feel like a lot of work. I have to pace myself and I am learning how to do things more slowly, after a lifetime of zooming around.

Dr. Nelson was being very friendly. She actually made small talk for the first time ever. As we were leaving I was surprised to hear her say, "You're an amazing person." I'm not sure what she meant really but I'm glad she likes me.

We talked about palliative options. She gave me a load of cough stuff (syrup, Tylenol with codeine, and something else), to see if something can help. If it doesn't, some lung radiation (not Cyberknife) after a CT scan would be an option. Chemotherapy is off the menu. At the moment, I'm disinclined to do either.   

My appetite is back, and I am sleeping much less. The coughing bothers me, and some hip pain. The most disturbing thing is not being able to walk (I fear I repeat myself) or having to lie down so much of the time. Thinking back to my anagarika ceremony I see how exhaustion somehow reduced my personality to the bare minimum. I guess that was radiation fatigue.

Meeting the hospice lady today. (She had to reschedule to later because of the recent plane crash at SFO.)

I miss my retreat massages. If anyone knows a good masseuse who makes house calls, let me know!

Saturday, July 6, 2013

Walking slow

I can't summarize the last two weeks, but maybe I can say a few things.

The retreat was wonderful. Because I got a chance to really take in my current physical situation, not to say predicament. And because my friends took excellent care of me there, brought me three meals a day, gave me massages, walked with me up to the shower with a chair so I could sit down to catch my breath every 15 steps or so. I have never been the object of so  much kindness before, as far as I can recollect. It takes some getting used to! It's so nice, too, to be in an environment again where the focus is on...well, existence really, one's own, and how one interacts with it. 

Right now breathing in sounds incredibly wheezy, like there are ghosts in my throat. Or sad elephants. 

Seeing Dr. Nelson Monday morning, and a hospice nurse Tuesday morning (here). 

My sister Kathy and my niece and nephew arrived tonight. 

Putting together Tania's massage table