Friday, October 31, 2008

Thursday, October 30, 2008

The Good, the Bad....

On the health front, the good is that I got my new brace on Monday. Not only is it better-looking than the old one (pictures will follow when I remember to charge the camera), but it is actually comfortable. I've been going around saying to Jerry, "Do you know what it feels like to take a step without pain?" "Yup."
I'm thrilled.

"Palaver" is Liberian English for hassles, for things that go somewhat wrong, for things that roil around and bother you. The bad is that my stomach palaver, which has been going on for a couple of weeks now, continues. I feel queasy some of the time and occasionally every day my stomach aches enough that I have to take Tylenol. It isn't debilitating, but it's damned annoying, especially because the pain is worst at about midnight to 2:00 a.m., so I lie in bed trying to decide if I can ride it out or should get up and take a pill, thereby waking myself up completely. Oh, of course. I can put the pills and the water beside the bed. Good idea.

In any case, I'm not asking for sympathy, and, in fact, feel almost embarrassed about even mentioning the stomach palaver. However, it's a part of what's going on in my life now.

Tuesday, October 28, 2008

"I'm praying for you."

I'm not exactly an expert on prayer, both from early conditioning and from later philosophy. But these days I get prayed for a lot, and I like it.

I spent a bit of time this morning doing what anyone with a question does these days -- googling. It turns out that among the different types of prayer there are "undirected" -- Thy will be done -- and "intercessory," in which the prayer intercedes with God for the prayee. (And I can't help pointing out that if you can say "intercessory" three times fast, it's yours.)

Quakers aren't big on intercessory prayer. The closest we come is "holding people in the Light." When I was a child, I had a beautiful image of the afflicted person beamed in a golden spotlight, surrounded by the lights of those who loved him. But then, once in First Day School (like Sunday School) a discussion about praying for people left me confused. Did the number of people praying for you make a difference? So if you had more friends and people to pray for you, you'd be better off? (Then why do Popes and Presidents of the Church die?) Or was it important to get the spiritual heavyweights on your side? James (5:14-16) seems to agree with that: The prayer of a righteous man is powerful and effective. But then, what about people who weren't spiritually righteous, but who were fervent in their belief? Wouldn't their prayers outweigh those of someone who was righteous but disinterested? It began to sound like a cosmic poker game in which, if you want results you need to work to improve your hand.

It's really the question of results that seems to me more important. James says in the same passage that the prayer offered in faith will make the sick person well; the Lord will raise him up. But there is the undeniable fact that millions of people are prayed for and still die. I come back to a safer and more realistic prayer: to continue feeling as well as possible for as long as possible. To have the strength to bear it all.

However, I have at least as many agnostic and atheist friends as I do believers. The non-religious tend to say, "I wish I were a believer, because I'd be praying for you," or "I'm sprinkling pixie dust all over you." "You know I wish you well." "You're in my thoughts."

And that, at least for the moment, is what is so important to me, not the form of the thoughts, how they're directed, or how the person visualizes the Recipient. It is that, however they imagine it, believers and non-believers alike are holding me in the Light. And that is precious to me.

Monday, October 27, 2008

So what should you say?

I've gotten a lot of responses to my last blog entry, many of them saying "I said such-and-so to someone, but I was so nervous that it came out wrong and I felt awful about it, so what should I have said?"
I had my advice all planned out when we ran into a survivor friend yesterday. He's recovering from radiation to his jaw for a throat cancer. Jerry told him how well he looked, and his wife told me that I looked really well for someone going through chemo, and none of it seemed insensitive. So I was left wondering: was everything I said last time wrong? Or does it make a difference if you've actually been there? Or what?
I've finally decided that the whole question of what you should say and how you should say it is more complicated than I first thought. But I have come up with some general guidelines.
First, we know our situation makes you nervous. Cancer is scary (and believe me, it's even scarier up close), so we can take it when people react awkwardly. Strangely enough, your first reaction is probably easier to take than what you say after you've thought omigod, she looks awful, what kind of cancer was it she has?, I can't even remember, that's terrible, but I know it's one of the bad ones, so I better not mention death or dying or hospitals or pain or .... what can I say to her? And then you come out with something totally inane, and feel like an idiot, and (trust me) you sound like one, too. That first reaction of "I heard about your situation, and it's horrible, and I wish you weren't going through it," is a lot easier to take.
So the first guideline might be to just say what you feel.
Next, once you have that first bit out of the way, remember that the conversation doesn't have to be completely or constantly about the cancer. There are subjects that are cheerier (you don't have to talk about the stock market). But it isn't rude to talk about other things, including what's going on in your life. I've occasionally known someone to avoid telling wonderful news about their family just because they don't want to make me feel bad. Weird, hunh?
Finally, remember that cancer isn't an individual thing. It touches the whole family. Don't forget to mention and send good wishes to the caregiver.

Thursday, October 23, 2008

Background music: How Insensitive sung by Bebe Gilberto

I know it's hard to know what to say when you see someone with cancer. But the people who said the following to me probably should have stuck with "It's nice to see you."
What I really thought is in italics.
1. "You look so good.... Especially considering what you're going through."
"Thank you." You know, you could have stopped after 'good.' Now I'm going to spend the rest of the day wondering what I actually look like. Besides, how often do you tell other chance acquaintances how good they look?
2. "Soooo. What's the prognosis?"
"Well, it ranges from grim to dire." What do you think it is? What should I have said -- 'The doctor told me to get out and really enjoy today while I last?
3. "Don't you feel that God is sending you a message through this?"
"No." Actually, God could have just sent me an email. I'd have paid attention.
4. "Yeah, things have been rough for me, too, but of course nothing compared to what you're going through. I don't want to bore you with my problems." Bore me! Not that I want you to have problems, but it's so great to think about something else for a while. You think I want to wallow in what I'm going through?
5. "I don't know how you do it. I could never go through that."
"Oh, I'm sure you could." I'm sure you could. There isn't, after all, much of an alternative. And every time I go up to the chemo room, I see completely ordinary, totally brave people going through it. As far as I can tell, not a Mother Teresa among them. Just people going through what they have to.
6, and my favorite. "How are you? Really?"
"Fine, thanks." Look, I haven't seen you for three months. If there were a difference between what I feel like and what I say I feel like, I'd share it with family and good friends, not someone I run across occasionally. Just take it the way I say it, okay?

After all of that, the other day I saw a friend whose chemo has stopped working.
I didn't know what to say.

Monday, October 20, 2008

A few more pictures from the visit


The pond across the street. We still have a few ducks who are hoping that maybe all this talk of winter is a myth and they'll be able to stay here and let the neighbors feed them forever.


Artistic ability just runs in the family. (Besides, it's been a long time since I put in a brag picture.)

How many jazz bassoon players do you know?

Sunday, October 19, 2008

Out on a high note

Just to show you how much better I was feeling by yesterday, the final Scrabble game was great. Russ was way ahead for a while, I was in last place, but then I went out on a 7-letter word on a triple word score, and with that and everyone else's points I won, beating Jerry by two points. (Ha. But who's gloating?)
The whole visit was wonderful, except for being much too short.
My innards seem to have settled down, too, though we'll see what tomorrow's chemo does for/to them.

Saturday, October 18, 2008

Low-key (but always in the right key) visit



Between gray and gloomy weather for at least one of the days and my not feeling quite as bouncy as I have before, the Russ and Rita visit has been low key. However, I can report, as a sign of Jerry's increasing maturity, for the first time nobody tipped the chess board over ("And now we'll never know who won").
I don't have pictures of the singalong/jam, but Russ took a video that might be good for blackmail some time. It was a kind of pick a key, any key experience.
And we made it down to Easthampton to see Max, Anya, and Miles.
But the visit has been much too short.

Wednesday, October 15, 2008

And then a scare....

I thought I'd spend this morning finishing cleaning up for brother-in-law Russ and sister-in-law Rita's visit this afternoon; but we ended up at the hospital. After an examination, a CAT scan, and a follow-up with the oncologist, I can say that I'm in good shape.
If you discount the stomach pain and nausea.

Those started last night, and in my confused state I got it in my head that I couldn't take both anti-nausea and anti-pain meds at the same time. Midmorning, Jerry called the doctor; luckily there was a cancellation, and even more luckily there was a cancellation in Radiology, so I was able to get in this morning.
Results? The CAT scan shows no change since June. This is very good news.
My CA19-9 numbers, whatever they are, are down to 101. Yours are probably about 37, but the numbers can go up into the thousands. The lower, the better, and mine have gone down since I went back on the chemo. Also very good news.

So what's going on? I always say that if something goes wrong with your computer, the first thing the expert will say is (accusingly), "What did you do?" and the second is (resignedly) "They do that." My stomach pain/nausea is apparently a "They do that." Maybe some of the nerves in the area are affected, or maybe it's something else. What it isn't, directly, is the cancer, and it was worth spending the morning at My Favorite Place in the Whole World to find that out.
Recommendations? Take your meds, all your meds, and don't wait until you feel really crappy to do so. Yes, doctor.

And by the way, what I kept thinking was, thank heavens that Russ and Rita are coming. If it had been something bad, we would have needed their support, but now we can celebrate (except that the anti-nausea med makes me groggy, so they'll get to see what I look like bombed).

Tuesday, October 14, 2008

The anniversaries start

I really don't want to wallow around in this, and I'll try not to do it very often, but from now on it's going to be anniversary after anniversary.

Here's what I wrote in my journal last year on the 21st:
Along about the 12th I started getting stomach pain and nausea. [I thought it was a reaction to the arthritis meds I was taking.]... I started itching all over and got horribly constipated. I couldn't eat much; food seemed disgusting, almost causing a gag reflex.... After two full days on the latest med, I continue to itch, and I've been sleeping mornings and afternoons and most of the night. I feel constantly groggy.... I have to force myself to eat. My weight has gone from 126 on the 1st to 123 today, which is nothing if you're trying to lose weight, but my weight doesn't ever vary from week to week. I feel crappy, and part of me thinks, "Oh, well, all this fuss over a slight case of gastritis," and part of me is terrified of the elephant in the living room. [These are all classic signs of pancreatic cancer -- but also of liver disease, bile duct disease, pancreatitis, and various other things. It isn't surprising that they didn't catch it sooner.]

This was also the time that Jerry was recovering from the operation on the cyst on his wrist and we didn't know if it was successful and whether he'd ever be able to play again. The same week he had the cardiologist appointment that sent him up to DHMC-Lebanon to find out if the enlarged aortic root was dangerous or not (it turned out it wasn't, but he has his usual echocardiogram plus cardiologist appointments coming up later this month). All in all, it was a stressful time.

Here I am, a year later, definitely feeling better physically. I had chemo yesterday and even with that I'm in much better shape than I was. But this year isn't exactly the kind of thing one can look back on and think, "Well, thank heavens that's over, and if I'd known then what I know now I'd have been able to sail through it." If I'd known then what I know now, I'd have gone screaming into the night.

But all in all, strangely enough, this year could have been a lot worse. I'm not going all Pollyanna, but I have to say that the year has had wonderful parts to it, some on their own and some because it's true: you look at things differently when you know that you won't have unlimited opportunities ahead to see them. Today on my walk I crunched through the fallen leaves, appreciating the smell and texture of them; I do it every year, but who knows how many years of leaf-crunching I have left?

Monday, October 13, 2008

Back to my Knitting

It's not just that I spend all my time on the computer, so when it crashes I suddenly have all this knitting time; it's more that I had three projects going at once and they all came to an end at the same time.


This is the Moebius scarf that has been my doctors' offices project for ages. Unfortunately I made it much too long, so you can't see how the loop works as a one-sided surface. However, I love the way it goes with the suede jacket I got in Seattle on a wonderful shopping trip with Cinda, in which we found everything we wanted and it was all on sale.

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Anya gave me the yarn for this as a hospital project, but I was too shaky to knit then. This is my own design, in the sense that I couldn't make the pattern work and just played with it until I was happy with it.


The shawl is made out of sock yarn. Never again. Bibi likes it.


I like it, too, as a matter of fact, especially the fringe which was fun to do. You intentionally drop stitches, which almost feels wicked, and then it opens out into a pretty fringe.

So now the only projects I have going are a dark gray very soft vest from yarn Miriam gave me, and a pair of socks in the colors that kindergarten clay used to come in: pink, blue, yellow, with bits of green. Since I'm still not sure I'll be able to wear hand-knit socks with my new brace this is not necessarily the smartest project to start. I just love knitting socks. I'm still just at the toes, so if anyone wants a pair of extremely bright socks, let me know soon and I'll knit them for you.

(And I'm not sure what happened up above with the bit of code and the colored text. Even after my brother's emergency surgery, weird stuff happens.)

Saturday, October 11, 2008

Infected

A friend told me the other day that she'd worried about me. The last thing I wrote was about getting a slight fever, and then... nothing. Well, there has been a virus going around, but it didn't hit me.
It hit my computer. When the computer started acting funny (very sluggish, not getting me where I wanted to be) my brother offered to come up and check it out, but suggested that I shouldn't expose anyone else to the virus and definitely shouldn't buy anything online for a while. Thus my silence over the past few days.
While Luther fixed the computer, I thought about this strange and unexpected calamity. Here I was, a responsible computer user. I never go into sketchy sites; I don't open emails from Nigerians; I usually (sometimes) update my protections. And without my suspecting it, something is eating away at the insides of the computer, keeping it from working properly, and, if not stopped, eventually stopping it cold. What a horrible thought. Much too close to home.
The good news is that Luther worked several hours' worth of magic, and the computer is now all better. (Wish that I could carry that metaphor over as simply.)
Meanwhile, check your computers. If I somehow infected you, I apologize.

Sunday, October 5, 2008

A Little Fever

Last evening, after a pleasant get-together with my brother and sister-in-law, I suddenly felt very tired and took an hour's nap. When I woke up I had a temp of 99.7. Now, just so Luther and Miriam won't feel guilty, I was fine until after they'd left (so maybe they should feel guilty about having left).
A temp of 99.7 isn't generally anything to worry about -- except that I usually run cool, with a normal temp in the range of 97.4. Besides, I have cancer, and any fever is cause for consideration, if not concern.
First there are the questions: is it something to do with the cancer or the treatment, or is it something I picked up in the community or from this week's many trips to the hospital? Is it meaningful? What does it signal about the future? Should I be trying to bring it down, or let it ride to see what happens?
Then there are the questions about what we should do about it.
It works out into a nice flow chart:
**If the fever goes up to 100 or 101 (we couldn't remember what the doctors had said) we'd call the doctor. But which doctor? It might be related to the stent replacement, in which case we'd call the gastroenterologist (or whoever was on call on a Saturday evening). Or should it be the oncologist? Or maybe our primary care doctor, who I never see these days, since I'm completely in the hands of specialists. Or, like last time, maybe we should go straight in to the ER. In any case, the response would be either "take two aspirin and call me in the morning," to put me on antibiotics, or to admit me to the hospital (which neither of us wanted).
**If the numbers continued to hover around 99.7~100, we decided we'd just keep monitoring it until either something happened or we got nervous; then up to the first option.
**If the numbers started going down, I'd take some Tylenol and we'd go to bed and see how I felt in the morning.
All of this seemed really complicated for something that, under normal circumstances, I wouldn't take seriously.
Except for a few aches and pains, a bit of a headache, and no desire to do anything, even read, I felt okay. Jerry kept offering to make cups of tea.
By bedtime the numbers hadn't moved, so I took Tylenol. Slept restlessly the first part of the night, and every time I tossed, Jerry woke up and worried that we should head out to the ER, so he didn't get much sleep, either.
Then, suddenly, just the way it does in Victorian novels, my fever broke and I felt better.
None of it, in itself, was earth-shaking or worrying. What is interesting to me is that once you have cancer or any other chronic and difficult condition, little problems become big ones that require more thinking and planning than they ought to.

Saturday, October 4, 2008

My Left Foot

I'm feeling so much better; and at the regular oncologist appointment Thursday, Dr. Nickerson said that I was doing really well. My blood is doing what it should; I was able to have the chemo uneventfully and felt well afterwards.

It is really ironic, though, considering what the major health problem is, that I am bothered much more on a day-to-day basis by my left foot. Because of my torn tendon and misshapen toes I'm in pain whenever I stand or walk for any length of time.

I met a born-again Christian nudist once and asked her how she reconciled two such opposite philosophies. She smiled beatifically and said, "God made my body, and He did a marvelous job." Fine, yes, but I tell you, my feet either are a proof a) that Intelligent Design is false, b) that heredity is all random, a mere throw of the dice, or c) that malevolent spirits exist and that they have a nasty sense of humor. Or, as Jerry suggests, I got in the wrong line in Heaven when it came to handing out feet.

I went in to see Dr. Letendre, my orthopedic doctor, yesterday. I pointed out that we've been trying without success to get my present brace to fit since January, so she decided that we'll try a new (and hopefully better) one. I'm excited, mostly because maybe it'll actually work, but also because instead of looking like I'm getting ready to reenact the Battle of Ypres, I'll look more 21st century, and who knows? Maybe it will fit into something besides running shoes. Not that I want Jimmy Choos, but something I could wear with a skirt?
And best of all, Medicare covers it. That's Your Tax Dollars at Work, the bits that aren't bailing out Wall Street. But you'd rather have them go for my brace, wouldn't you?

Wednesday, October 1, 2008

Stent is in


It's amazing what modern technology can do. I tried to stop the nurse from running the anaesthetic because the doctor was explaining to the other nurse just how the new little camera worked and I wanted to hear, but they knocked me out and I missed the ending. As you can see, though, they got the camera in, though the way I've been feeling for the past couple of days, I think they may have left something besides the stent in me. I should just be glad they only send a camera, and not the sound man, gaffer, and key grip.
Actually, I don't feel that bad, but I don't feel wonderful either. Pain in the stomach, intermittent but bothersome, and some nausea. I only mention it because I've felt so good in general that maybe I've gotten spoiled. I use this as an excuse to do nothing but lie on the couch and read. Anyone read the Donna Leon mysteries set in Venice? Nice writing, philosophical, but much too slow-moving for Jerry, who needs at least one corpse on the first page to keep his interest.