Saturday, July 26, 2008
Well, for all the ongoing efforts to manage my bowel distress, I have ended up in hospital with another partial obstruction. It was quite dramatic. Tuesday I greeted the morning with a big throw-up, so my palliative doctor came over to see what was going on--and I did it again, only this time all over her.
I do not think it was the most diplomatic route I could have chosen to get someone's attention, and I sincerely hope she remains on speaking terms, especially because she needed to finish her day wearing a pair of my lime green cargo pants.
In the past week I was back to not eating much, but they have started the artificial feeding again, and I think I am back on the planet. Sharon and Pam are visiting this afternoon, and I popped up in bed announcing that I needed to post something. Clearly, things are looking up!
Sherri has just stopped in to say hi. I will close off this miserable attempt to type on a food tray. Doesn't improve the typing any more than the food.
Just wanted the loop open
Saturday, July 19, 2008
I've got an email inbox full of messages I will get to as quickly as I can--but I thought this might be a way to let as many of you know as possible how the week turned out. The problems I had early in the week with not eating, being full of gas again, and all those other delights meant many visits from nurses and one from the palliative care doctor to see if we could get a handle of one of the possible options from the usual menu. If you expected to hear from me and didn't, it was likely that I was talking to, being measured by, answering questions from someone medical.
Then things started to turn around on Thursday, so while I am no further ahead in figuring anything out, at least I feel a lot better. I am always happy to receive the gifts of my body's efforts to make things work more normally.
Slowly, I am getting used to this new world of being a palliative patient. Any of you who know my poetry know that much of it deals with falling down that Alice in Wonderland rabbit hole, where you start out being yourself and end up in the strange, upside-down-world of patienthood, where you become in some sense a stranger to yourself and have to learn a whole new set of roles and get good at reading subtle signals and entrails.
So I thought I kind of had the patient thing nailed, and there weren't any more of those sorts of surprises. Maybe it has less to do with being a palliative patient than having more than one team working with you at the same time. That will take more time to figure out. Anyhow, my oncologist is dealing with chemo and its effects on the bowel, and the palliative folk are dealing with shots in the bum and their effect on the bowel. At the moment, it feels like two completely different teams, two different sets of questions--but only one poor bowel, which would actually like the two teams to talk to each other a little more.
In a way, it's been a little like watching a tennis match, made somewhat challenging because my oncologist is on holiday, so I'm only seeing one side of the play. I get to see him on Wednesday to get a clear clinical picture of whether/the extent to which the chemo is working. I'll also get his take on the belly distention and how he thinks the bowel working. Since he's done two surgeries down there and been up to his elbows, I reckon nobody know the territory better. Then I can put that together with the palliative picture of the bum shots and symptom management and see if I understand the big picture a bit better.
I think what has surprised me is that I had to lead the charge on bringing the two parts together. I can never function very well when I don't have the big picture, and I've never liked the part of being a patient that puts the big picture only in the hands of the pros. I need to hear my own voice, recognize myself and make decisions. Even if I'm wearing a stupid blue gown and no shoes.
I've worked with my oncology team for so long that we know how this goes. When I was in hospital, one of the residents told me that on the first set of rounds where my doc presented me (what an odd term--but I watch too much tv), he said that I probably know as much about my disease as anyone on the floor, and she was to listen up when I asked questions or told her anything.
I liked that. The palliative team doesn't know me yet, so part of my job is to get that going. I put an oar in the water on Friday when the nurse asked, full of concern, if I had any unfinished business left. Other than farting, I assumed. I knew full well what she meant, but chose to misunderstand.
"Hell, yes. I'm not ready to cash out yet. I've got a swat of writing that seems to be growing by the week, and I'm damned if I'm giving up on it. So let's get this show on the road."
It wasn't much, but it was a start.
Then I had the big treat of my sister, Pam, coming in from Saskatoon again. We are at Sharon's hanging out and keeping close for the weekend.
Wednesday, July 16, 2008
A little update to let you know that impatience seems to have no effect whatsoever on the rate at which I start to feel better. I am pleased that the reduced dose of meds is having the desired effect--but clearly there is an expectation in my heart that now I should be back to normal and doing whatever the hell I want.
Ain't happening. I am tired and weak--and an adventurous trip to the supermarket is out of the question. I know there is a zen-like way I could be surrendering to this desire to rest (ie I could lie down and sleep without making a song and dance about it), but I find myself resisting and whining and struggling. It's a good thing it's not winter, or I would have tried to put on pantyhose today just to prove I could still do it. If I wanted.
This has got me thinking about rhythms when you are ill. There's the dailiness of which meds when; of whether this is a nurse or a not-nurse day; of whether the heartburn is typical week 3 post-chemo irritation. It looks like my expensive shot in the ass knocks me out in predictable ways for about a week, and chemo knocks me out for a different week.
Thank God I'm only on 2 big things a month.
Getting used to these changes and learning to understand what they do--and do not--mean is a whole new thing. I understand fully why the ancient soothsayers pawed through the entrails of chickens. What does this new thing signify? Do I need to pay attention to that belch or twinge? Does it matter that if I'm going to have pain, it's more likely to start in the late afternoon?
It's a fine line between attention and neurosis. Maybe I'll just lie down on top of it for a while instead of trying to walk it!
I may get behind on phone calls and emails for a few days till I can get both eyes to consistently stay open at the same time. Don't worry, though. I haven't gone far!
Sunday, July 13, 2008
So we were at Sharon's to help my sister avoid the cats at my place. But there was a hitch: Sharon and Ron actually have a cat, Barclay. Now, he spends most of his time outside in the garden, sleeping under the honeysuckle. And he always goes out at night--so what with one thing and another, we thought we could manage.
Mostly, Barclay is Ron's cat--and like two retired old men, they have worked out their routines together. Ron's lap is the sitting lap. Ron's beard is what you cuddle up to. And Ron will come downstairs to the food bowl and watch you eat if he isn't busy sawing things to pieces. Barclay knows Sharon is a hopeless substitute, so he doesn't even give her a try.
I told my nephew, Adam, about the food routine. "Oh, I can do that, " said. And turning toward the cat, he called, "Come on, Barclay, let's go."
Ten minutes later, they emerged from the basement looking quite pleased with themselves, and Barclay had a new friend.
Next day when Ken and Judith arrived, Barclay knew he had hit paydirt. "Follow the ass," he seemed to say as he picked out one likely sucker, then another. And with his wonderful tail curling over his back and waving like a Flames flag behind him, he managed to cajole Judith to eat with him. Pam would follow him to the front door to let him out and in, out and in. And once (or at least, she says only once) she followed him to the living room where he jumped up on the couch and waited for her to join him even though she seemed unable to get all her paws on the cushion at once.
It was a most excellent day for the feline. But the best was still to come. Let outside when we all went to bed, Barclay called through the family room door to Adam around midnight. He of the Smitten Variety got out of bed, padded over to the door and opened it. And in sauntered Barclay with a very small, very dead mouse hanging out of his face.
"Barclay, take that outside," pleaded Adam, not entirely sure how to get the cat to follow him rather than the other way round.
"No way," said the cat--or words to that effect. He had done a manly thing, bagging a kill for the family. It was better than rent. Why would he take the damned thing outside again?
And so Adam, crawling back into bed and I imagine jamming a pillow over his head to muffle the sound, got to hear Barclay chomp down on the poor mouse from top to bottom, crunching all the bones as he went.
And when Adam sneaked back out to assess the damage, he said that all that was left was one tiny red undigested berry from the very small intestine of the very small rodent.
It was, I am sure, the best day Barclay had had in a very long while.
Got my long-awaited Octreotide shot on Thursday, and the reduced dosage seems to be having the effect the doctors want: almost no diarreha, and bowels that are waking up again. I'm relieved that their theory that my misery was drug-induced looks to be correct. But more than that, I am fascinated at how my body is responding. For more than 6 weeks, my bowels weren't working in the ways they had for 60 years--and of course, there was always the possibility that they had just packed it in. But when we removed at least one of the obstacles, they began to remember what they have wanted to do all along.
I know that some people feel betrayed by their bodies when cancer strikes. I have had almost the opposite reaction: the impulse my cells and tissues have to health is actually remarkable. No matter what the toxins I take in through chemo, my body wants to use them to get rid of the tumors. And even when the medication forced my bowels into some kind of weird dormancy, they knew right away what to start doing the moment it became possible.
Isn't that remarkable?
So score one for me and my gut. I hear/think/read lots about how important it is to pay attention to the subtle signals your body gives so you don't have to deal with huge symptoms later. I am even learning how to do that. So for the past 3 days, I have become re-acquainted with what it feels like when stool is forming. You can tell where things are, and you can feel it making its way along. It feels way different from being full of water.
And I suspect that's way too much information--but I'm back in that kid-like poop space for the moment. This too, as they say, shall pass.
Score two: I got out of the house for a few days. My sister and her family drove in from Saskatoon. We stayed at Sharon's (she's on the coast, working like a navvie) because Pam is allergic to cats. So it was like being in a lovely hotel for all of us. Sharon has an amazing garden. Then we were joined by friends from Texas on Thursday. Turned into a party, and I loved being enfolded in the laughter, take-out Chinese and the little taste of superb Scotch that made it onto the See Food diet. We watched Rare Birds and roared with laughter, and talked and...well, just did what you do at a kitchen party.
Rats won a round with the side effects of the steroids. It feels like overnight, I blew up like a puffer fish. Unfortunately, I saw it the morning I went for a haircut. I was sitting in the chair ready to get a fashionably spiky cut and I was appalled at the cheeks that stared back from the mirror. Where had my mouth gone? My eyes? Why was I all gopher and no girl?
"Well at least your skin is really smooth?" the sweet young thing who was cutting my hair offered tentatively.
"Jesus, I look like Mr. Potato Head. How can this happen when you aren't even looking?"
Plus, the steroids are giving me spaghetti legs, front and back. My thigh muscles have so little strength that I actually think I qualify for a handicap sticker. And I'm just not willing to be debilitated again by medication. Cancer is bad enough. Putting up with this nonsense ain't in the plan.
I consult with a doc early in the week--but it feels like this is one of those times I need to be an im-patient.
Monday, July 7, 2008
I had another Healing Touch session today. My friend Cindi has been doing this with me for a long time, and it just gets better and better. All my bones seem to have melted this evening, and I'm getting ready for a very early bed. It rained hard this afternoon, and the evening air smells delicious.
Two pieces of good news that don't have a thing to do with guts or anything medical. One is that I have had an article accepted by the Harvard Educational Review. We start doing the editorial work immediately, with a publication date about 4 months from now. It's a piece I co-wrote with Sue Marinucci. We both feel quite smart!
And I just got word that I have been accepted for a week's writing retreat at the Banff Centre in September. Did a happy dance on that one, too.
I've been making a list of things I want to write. It feels good to have one of them almost done, and another pointing the way to Banff. When I get fingerbones back, maybe I'll share some of what's on the list.
Or does that jinx it? I started the list when I just thought it was a good way of getting my mind organized. I didn't realize that Lists are another one of those Oprah/Secret/Louise Hay things that have popped into being as some kind of other life form I know nothing about. Anybody else make lists, and how come, if you do???
Saturday, July 5, 2008
The weeks that I have been dealing with this incessant bowel business have been trying. Since the end of March, when The Troubles began, I've lost 30 pounds, and some days it's all I can do to shower and get back into bed.
Being this weak, and knowing it would only get progressively more so till we got the medication issue straightened around, I was thrown on the horns of a practical dilemma--but also had to face one of my deepest fears head on. I live alone. I have no Perfect Husband to wait on my every need, no Utterly Uncomplaining Children to make sure that I always have what I want, even before I know I want it. You know the kind of thing you make movies out of in your head when the mere details of reality are no obstacle. My friends with real husbands and children tell me I must be on more drugs than I realize when I start talking like this!
I have always been afraid of how I would manage when, well, I couldn't manage. And now I know.
When my friends and I realized how vulnerable I was by myself, we (mostly meaning they) mobilized into action. I have always been fiercely independent, mostly successfully, and while I had gratefully accepted help all these years to get to and from chemo, or to cope post-surgically, I had never been in a position where I actually couldn't trust my own judgement about how well--or not--I actually was.
Not eating for days will do that to you.
So here's what we did. A group of friends called a meeting to set up a roster so that every day for at least 4 hours, someone would be with me to do chores, make sure I ate, take care of anything that needed taking care of. The cats, by the way, send their total gratitude for this!
They posted a Google calendar so I could see who was coming when. I didn't have to make a decision, lift a finger, dial a number. Hell, I didn't even have to be awake.
They are caring for me in the most loving and careful ways, and my deep fears have simply melted away. There could not be a better gift in all the world to give a friend who doesn't always even have the energy to say what she needs.
But here's another thing we are finding out. All of us (including me, before this latest drama) are very busy in the world. Most people work, but even retired people like me get booked up with lunches and shows and shopping and god knows what all. These past three weeks, I feel like I have found my friends all over again. The most precious thing we have been sharing is just our hang-out time. Yes, the practical help is essential--but nobody is rushing in like the White Rabbit in a hurry to somewhere else.
Just sitting or lying around sharing what we most love about one another--that is amazing. Every person is precious to me in unique ways, and like Slow Cooking, I am basking in that uniqueness again, remembering all over why we like one another so much.
It's not like having visitors--in fact, we all agreed not to do that. I don't have to rise to anything, although I've always been good at it. And they bring their own selves ready to have tea and stay a spell.
And the best thing is that as people are able, the circle gets bigger and more complex. It's like we are all growing very long arms, caring for one another.
Got through last weeks' chemo, with each day being progressively more difficult than the one before. That's part of the rhythm of treatment: you fill yourself with toxins, deliberately and systematically, and then wait for the hammer to fall.
I am constantly amazed at what we ask our bodies to endure in the name of treatment, and the ordinary, everyday stubbornness it takes to just do it--over and over again. This time, the GI irritation that usually holds off till about week three started at once. I had heartburn-like pain from the middle of my sternum to my crotch, if such a thing is possible. My innards felt raw--which also meant being thrown back into the not-eating place as well as all the indignities of hamburger-for-guts. My gums started to bleed, I got thrush. Nothing was spared.
So I called a nurse, who came over to help. "Okay," she said, "you could start with something like Gaviscon or Tums to coat your esophagus and stomach. That'll help."
Gaviscon? Tums? Excuse me, but I have a Most Serious Cancer going on here. And you're saying all I need is some kind of pizza fix-up?
Well, I didn't actually say this out loud, but I sure thought it. I'm burning from stem to stern and I should take a Tums??? Give me a break.
But I did it anyway, no high power prescription seeming to be forthcoming. And it worked like hot damn. In less than five minutes, the raw burn was gone and the sharp pain in my belly had subsided.
So what else did she have up that nursy sleeve of hers? My belly was distended--too much gas going nowhere--which was making me very uncomfortable, and also raised the spectre that maybe I was starting to bung up again.
"Gasex", she said, "or Beano. People like Beano."
So I should get with the dorky guy in the Silent But Deadly commercial and solve my Very Serious Intestinal Distress with a strip of drug store tape? Surely there was something more, well, exotic or solemn I should be trying.
Turns out, nope, Gasex works just fine. And finding that out was like discovering that my chemo nurse was right when she said the very best thing for mouth sores is rinsing with Club Soda.
I learned a couple of things from all this. First is the actual wisdom of folk wisdom, and the power of sharing humble but effective solutions with others. There's a lot of drama around cancer treatments, and I got caught up in thinking that serious attention to comfort needed to be solemn, or prescribed by someone in a white coat, or be somehow big enough to assure me that my pain was being taken seriously.
I think it's great that nurses know what they know, from the most technical medical stuff to the kitchen table solutions that work just fine, thank you very much. I'm glad they pass it along even when people like me look right through the obvious holes in their head.
And I'm glad to have a body that's still enough like everyone else's that a couple of chews will do me.