Tuesday, April 29, 2008
And here's my favorite quote from his blog:
Besides, don't they always say in the movies that you should never show fear? I don't want the cancer to know that I'm worried about it. I want the cancer to be worried about what I'm going to do to it. For all that the disease has done to me, I hope that it lies awake at night worrying about what I'm going to do next. That only seems fair.
-- Leroy Sievers
April 3, 2008 http://www.npr.org/blogs/mycancer/
Monday, April 28, 2008
Green Banana Seafood Salad
Serves 4. Best made a day ahead so the flavors can blend.
· 3 unripe (green) bananas
· ¼ green pepper, chopped
· ¼ red pepper, chopped
· 1 cup small shrimp - peeled and deveined
· 1 cup crabmeat
· 1 small onion, chopped
· 2 cloves garlic, crushed
· 1 teaspoon sugar
· ¼ cup red wine vinegar
· ½ c olive oil
· juice of ½ lime
· ¼ cup sliced pimento-stuffed green olives
cherry tomatoes, avocado, whatever you like to garnish it with
DIRECTIONS Cut ends from green bananas and slit peel lengthways; keep peel on. Boil bananas about 15 minutes until soft yet still firm. Drain bananas and place in a pan of icy water until cool. Peel bananas and cut into 1/2-inch rounds. Coat with about 1 T olive oil.
Meanwhile, heat a bit more olive oil in a skillet over medium-high heat. Add shrimp and crab, and fry until cooked through, about 5 minutes. Set aside to cool.
1. Combine garlic, peppers, olives, onion, olive oil, vinegar, lime juice, in a bowl. Add bananas and seafood, toss to coat well. Salt and pepper to taste. Add garnishes, chill.
Saturday, April 26, 2008
The chemo went smoothly, though I think I'm more knocked out by it this time than either of the others. More nausea, less energy.
Cinda and Rob are here from Seattle for the week; actually they went down to Easthampton to see Max, Anya, and Miles yesterday afternoon and they will all come up this afternoon. I can't wait -- family is the best medicine (and besides, Jerry's cooking).
Medical plans are now that I'll have until May 12th off, time for my body and spirit to heal while the chemo zaps away at the cancer. Then on the 12th I start daily radiation plus twice a week lighter dose of chemo for a few weeks. Then we see what effect all this has had.
It's wonderful to hear all the news from family and friends. This has been (and continues to be) an unexpected joy of this blog. Keep it coming!
Wednesday, April 23, 2008
Then, while I was waiting for my appointment, I felt as though something was crawling under my T shirt. After I'd wiggled as unobtrusively as possible, I discovered that I'd brought the spider into the waiting room. It strolled around under my shirt and finally came out onto my sleeve. I flicked it off onto a plant, wondering if this was some sort of omen, and if so, of what.
I met with the radiologist, who told me all about the side effects I can expect (nausea, diarrhea, exhaustion), told me the set-up (I'll start the radiation/chemo on May 12th for five and a half weeks) and then said, with great excitement, that I was really lucky because their brand-new CAT scanner was up and running as of today, and it's much faster than the old one. When I said, "Oh, so you're practicing on me," he said very seriously, "No, of course not. We've used it already -- on one other person."
So I went in for the CAT scan, with the usual hospital johnny, IV with a contrast dye, and instructions to lie still. The room was crowded with three techs plus two trainers.
Conversation on their part was limited to further reminders for me to lie still and mutterings among themselves along the lines of "No, you don't attach that there,"
"Should the readings be this high?"
"This is really different from the old one. What is that for?", none of them leaving me totally confident.
Then they all left the room for the machine to do its work. As reminded (again) I lay still. Because the machine was new and the trainers long-winded, it apparently took more time than usual, but I was fine until I remembered the spider.
Believe me, there's nothing like having to lie completely motionless to give you hallucinations of arachnids crawling all over you. I managed not to twitch.
After the techs tattooed little dots on my middle to guide the radiation, they finally let me move and watched with fascination as I shimmied and flapped my arms. I had to asssure them that I was fine and that their wonderful new machine hadn't hurt me.
Spring is wonderful. Nature is wonderful. But next time, I kill the spider.
Tuesday, April 22, 2008
It's upsetting. Despite a pleasant afternoon getting the back porch cleaned up so that we can use it and then a spontaneous beer-butt chicken barbecue with friends, I found myself having a mini-meltdown last night. I think it was triggered by the reminder that I'm not really in control. I can't even make my white blood cells do what I want.
Monday, April 21, 2008
Chemo brain is real. The scientists admit it, after years in which they explained to us that it was simply a psychological response to the stresses of dealing with cancer and chemotherapy. But now, if you check sites such as http://www.cancer.org/docroot/NWS/content/NWS_2_1x_Seeking_Solutions_to_Chemo-Brain.asp
you’ll find that it is a medically-recognized condition. In case you had any doubts, Wikipedia http://en.wikipedia.org/wiki/Post-chemotherapy_cognitive_impairment even gives it a newer, longer, better name: Post-Chemotherapy Cognitive Impairment, which will undoubtedly be abbreviated to PCCI. What’s wrong with chemo brain (as a name)? For that matter, how did shell shock morph into PTSD? There are linguistic theories, but you'll have to look elsewhere. These days, I can't manage complex discussions.
The signs of chemo brain are memory lapses, loss of fluency, confusion, and loss of spatial orientation. For some reason, many people with this condition get depressed. So far, there don’t seem to be too many treatments for it, and all the medical profession can offer is that the symptoms seem to go away after a certain period of time. Maybe years.
In the spirit of helping others who may have this condition, I’d like to suggest ways of dealing with it and using it:
- Don’t spend a lot of time worrying about why you can’t remember whatever it is you can’t remember. If it’s important enough someone will tell you.
- A good excuse is that your brain has shut down for the time being so that you won’t lose too many cells.
- Write down everything you need to do in a small notebook that you attach to your wrist, like children’s mittens, with idiot strings.
- Remember to check the notebook occasionally.
- When your brain gives out and you stumble over a sentence, look the person directly in the eye and say, "Did you catch all that?"
- Understand that it’s okay to stand in front of the refrigerator with the door open for as long as it takes to figure out why you’re there.
- Just for fun, stare your oncologist in the eye, and say “Whoa – you’re treating me for WHAT?”
- Announce to worried friends, “At least it doesn’t affect my ability to drive.”
- Get a GPS system. This will help you find your way around the house.
- Always be thankful for the loving support your husband gives you, whatever his name is.
- If he beats you at Scrabble, scream loudly that he’s taking advantage of the handicapped.
We’re off for chemo this afternoon. Jerry (see, I really do know his name) says that if I beat him during our ritual game it’s because he’s developed Chemo Brain by Lateral Transmission. I think he’s just jealous.
Saturday, April 19, 2008
- Two of my favorite males; this is the only picture I have in which neither of them is mugging (Jerry and grandson Miles).
- The ice is out on the pond in front of the house, and I've already seen canada geese, ducks, and the beaver.
- It must finally be spring, with peepers in the evening, birds chirping in the morning.
- Today we had a flying visit from nephew and niece, McKay and Hilary from Utah, before she runs the Boston Marathon on Monday. Go, Hilary!
- Monday is the last heavy-duty chemo; and none of it has been as difficult as I thought it might be.
- Wednesday is the Keene State Orchestra concert, with Jerry on bassoon, playing an all-Gershwin program.
- Thursday (best news of all) Cinda and Rob arrive from Seattle for a week's visit.
- I feel strong and well.
This is a week to savor in anticipation, to enjoy in progress, and to remember in contentment. May you have the same.
Friday, April 18, 2008
I'm thinking of this at the end of what was, really, a "normal" week. I went to Pilates and Yoga, to the Y and the library, did some sewing and knitting, threw out a bunch of old teaching materials -- what could be more normal? Banal, even. But if you hold each of these up to the light, it looks different.
Yes, I went to Pilates and Yoga, and enjoyed them. But let's face it, whatever core muscles I once had are long gone, and in both classes I spent a lot of time lying on the mat recovering from things that used to be easy. I have to remember that I'm in a different place from before, and, in any case, Woody Allen says that 90% of everything is just showing up.
The sewing and knitting projects were both cancer-related. I modified the wonderfully inspirational sweatshirt Steve and Jack gave me, and knitted a headwrap. I should make a resolution to create something that has nothing to do with my situation.
I'd been promising myself to throw out the old teaching materials for two and a half years, but now I felt as though I had to explain it to Jerry, to myself, and to anyone else. Really, I'm throwing out stuff because I want to simplify my life and get rid of the non-essentials. Really, I'm not trying to make life easier for anyone who might happen to outlive me. Really.
And then I made arrangements to take the cat to the vet (she's licking her fur out; Jerry says it's a sign of solidarity with me), because on the one hand in normal times that's what you do when your pet has problems. On the other hand, how do I deal with anything extra? Life is already complicated enough. Same with getting my brace modified today. I had to think about it for quite a while: is it worth the expense in energy?
The thing is, no matter what you do, the elephant remains in the living room. You can't ignore it. I guess all you can do is vacuum around it and maybe occasionally use it as a footstool.
Wednesday, April 16, 2008
The Book of Job is considered the greatest poem/conversation on Why Bad Things Happen to Good People. As a part of a kind of cosmic bet, God allows Satan to inflict evils on Job: loss of wealth, livestock, and ten children. That isn’t enough, so Satan gives Job boils. Job’s wife urges him to curse God and die, but he refuses. Unless I missed it, he doesn’t pray for either justice or mercy. At the end, he gets more livestock and children to make up for the collateral damage. Presumably, the new children completely make up for the ones who were crushed when a building fell on them as they feasted. But I wonder. Did they pray? Were their prayers completely disregarded? The Book of Job is not comforting for anyone but the protagonist.
However, few religious traditions guarantee that prayers will be answered in the way you expect them to be. When people tell me that they’re praying for me, I always feel a kind of warmth, almost a jolt of energy, but I don’t confuse it with a cure.
What the prayers, either the imagined ones from the Dalai Lama, the odd one from the clerk, or the meaningful ones of family and friends remind me of is the games of Red Rover we used to play when I was little. I was always the weakest link: everyone aimed for me, where I stood holding hands with Michelle and Suzanne, because they could always break through the line. Then someone on our team had the idea of our holding each other’s wrists instead of hands, and for the first time my part of the line held against the enemy. And then we decided to put our arms behind each others’ backs and hold the wrists of the next person in the chain. This strengthened our line so much that no one could break through. The enemy team gave up. That’s what I imagine your prayers doing for me. They strengthen the line and weaken the enemy.
Monday, April 14, 2008
So I stopped off to buy an energy bar on my way to the Y. I had to wait to pay until the clerk had finished a long conversation with the person ahead of me. Okay, I thought. I have plenty of time, and it's a nice day.
The clerk looked at me. "You look like someone who'd be interested in hearing this," he said. "I have colon cancer."
"Gee, that's too bad," I said. He must have noticed my scarf. " Mine is pancreatic."
He did a double take. I guess he hadn't noticed it after all. "Gee, that's too bad," he said. "I've had two colonoscopies, and they took out two tumors. The other was just pre-cancerous." He went on to tell me all the details, sizes, exact locations, how much it had hurt, and what the doctor had told him. After a while I thought, You know, this is more information than I really need from a total stranger.
He went on, "And then he asked me if I was gay. Why would he do that?"
"I haven't the faintest idea," I mean aside from the fact that your gestures are straight out of the first Cage aux Folles.
"I know I told him about the rectal bleeding -- " This is definitely too much information. -- "but it's not as though my friend and I ever do anything." I didn't need to know that , either.
I managed to move the conversation over to treatment options. He isn't getting chemo or radiation, but he still doesn't feel well. You know, bloating? No, please, don't tell me about your bloating. He told me about his bloating.
Finally I was able to pay for the energy bar. At the last moment, he pulled his thoughts away from his own situation and said, "You know, I'll be praying for you."
It struck me that those of us with cancer form a kind of community. Sometimes it's a weird one, but it's there.
Sunday, April 13, 2008
In any case, we have now done our bit for the sagging economy, at least that part of it connected with plumbers and Cushing and Sons.
Then last night we heard munching and skittering in the attic. I swear we also heard some in the closet, but Jerry doesn't believe me. Apparently, some of God's Little Creatures decided that instead of going out into the springtime to do their thing they'd come into the house. Make that God's Confused Little Creatures.
I swore. The cats were delighted. Jerry, more practically, insisted that we take sleeping pills and turned the fan on for white noise. We made it through the night, but he's now out buying a trap which he plans to take up the ladder outside the house and somehow get into the attic. I'm not sure what happens next, and I'm not sure I want to know.
But all of this does make for distractions from what's been the kind of week where I've felt as though I might be coming down with the flu but haven't quite managed it. There are ups and downs -- ups including a knitting get-together and a trip out for pizza, downs including a lot of lying on the couch.
Friday, April 11, 2008
Born and brought up a Quaker, I can’t remember a time when I didn’t meditate. Even though I don’t attend Meeting now, Jerry and I meditate every morning, and I certainly think of meditation and relaxation techniques as part of my toolkit for dealing with cancer.
Which is not to say that I’m anything more than a beginner: I’ll put my drunken monkey up against anyone else’s. I’m always ready to learn more, so I've been collecting some materials that promise to help me become a better meditator.
All of these depend on the same kind of willing suspension of disbelief that you need to enjoy a movie or a good book. Jerry has trouble when he visits my yoga class and the teacher says something like, “Let your shoulders sink into your shoulder blades, and your front ribs rest quietly on your back ribs.” He snaps to attention to figure out why all that is impossible. These techniques are not for him or anyone else who expects a logical universe.
Here are three cds that deal with meditation, only one of which I can recommend:
First, and weirdest, is one put out by GlaxoSmithKline. It’s called Guided Imagery: a Technique that Engages the Imagination in the Healing Process, by Belleruth Naparstek. The CD started with the standard breathing instructions, and then, somehow as I listened and breathed, some Beings appeared (I think she meant angels, but I kept seeing green extraterrestrials) who used Magick (and I could clearly hear the k) to shrink the tumors. At this point I snapped to attention and turned off the cd. I don’t do Magick.
I had hopes for Eight Meditations for Optimum Health by Andrew Weil, a guru of mainstream alternative medicine. The basic introduction with breathing instructions was fine, but I ran into trouble with the meditation on Healing Yourself. Strangely, it was the opposite problem from the first CD. In order to emphasize how powerful the body is in healing itself, he suggested a minor kitchen accident, cutting yourself with a paring knife. Suddenly in my mind the countertop was covered with blood and I couldn’t find a bandaid. I had to do a lot of deep breathing to counteract that image.
The best CD is Imagery and Meditations for General Health: 5 Relaxation Techniques for Optimal Well-being. (It strikes me that what all of these share is really awful titles.) This is by Jennifer Bloome, and she has a pleasant voice. The breathing section is standard, but there are a nice progressive muscle relaxation and a beautiful color imagery section. This is the one I use.
There are also two DVDs: Stress and Relaxation Explained, by Alice Domar, which is actually an infomercial designed to get you to buy the full set of DVDs, but which includes a nice guided relaxation with waves lapping up on a shore, and Dean Ornish’s The Spectrum, with Anne Ornish explaining and leading short meditations. Since I like to close my eyes while I meditate, neither of these is my choice.
Anyone else have any favorites?
Thursday, April 10, 2008
Doing socks with color-changing yarn was about my speed. I'm at a mechanical part, where I just go around and around in the simplest stitch, so I did this, thinking, ve-e-ery slowly, "Oh, yes.... It looks as though I'm almost through with the gray.... Next is blue.... Very nice.... Wonder... what... comes... next....." After a few minutes of this gripping excitement, I was ready for another nap.
Unfortunately, coffee and wine are back to not tasting good, though by last weekend they were almost back to delicious, so I have hopes that they (and food in general) will continue to be more and more attractive as I procede through this round and the next.
Wednesday, April 9, 2008
Real Doctors Notes
Tuesday, April 8, 2008
Sunday, April 6, 2008
I started with Islam. When I was at the American University of Beirut in the ’60’s the only women who went veiled were from the countryside or Kuwait, though one Iranian friend admitted that during summer vacation she had to wear a chador covering her entire body. “But,” she added, “It gets really hot in Tehran, so I always just wear my bikini under it.”
I’m amazed at the number of Muslim women in the past twenty years who have embraced various forms of veiling. While I briefly considered the effect on Cheshire County if I suddenly appeared in a chador or a burka, it was really the hijab, the headscarf, that I thought might cover my bald head with a bit of elegance and comfort.
When I googled “hijab,” though, instead of styles, I found myself looking for answers to the question of why anyone with a full head of hair would want to cover it. I know why I want to cover my head. Not-quite-spring in New Hampshire is cold! This is not the case in large parts of the Muslim world.
Most of the Islamic reasons for head coverings came from Surah XXXIII, Verse 59 of the Qur'an: "O Prophet! Tell thy wives and thy daughters and the women of the believers to draw their cloaks close around them. That will be better, so that they may be recognized and not annoyed...." (from A.Yusef Ali's translation of the Qur'an; other versions translate the original Arabic as "veils" where Ali uses "cloaks").” http://english.emory.edu/Bahri/Veil.html . I paused to note that there was no suggestion that the men should simply behave themselves and not annoy the women.
After a couple of sites on snoods and tichels, I went on to briefly check out Jewish law on headcoverings.
“The Talmud in Kesuvos 72a states that the source for this prohibition [covering the hair] is from BaMidbar (Numbers) 5:18 which deals with the laws of a sotah - a suspected adulteress - and states, "The priest shall stand the woman before God and uncover her hair...". Rash'i (Rabbi Shlomo Yitchaki, 1040-1105, author of the primary commentary on the Talmud) provides two explanations for the Talmud's conclusion, one, that from the fact that she is punished … for exposing her hair to her paramour we see that this is prohibited and, two, from the fact that we expose her hair we see that under normal conditions a Jewish woman's hair should be covered.”
The reasoning seems circular and left me wondering if the adulteress would have been okay if she’d exposed everything else to her paramour while leaving her hair decently covered.
A bit of clarity came from
“In Jewish tradition, and even in very old linguistic usage, "an uncovered head" means unbridled license.”
That’s it! My goosebumpy scalp is going to lead someone to unbridled license. Or maybe not. The first quote clearly talks about hair, not just head.
A Christian site http://www.achristianhome.org/ModestFeminine/ModestyFeminineAttireIndex.htm made the whole subject clearer, with a page titled Are men lusting after your wife or daughter? The article states that “Men have to look at women, and if they are dressed immodestly it is a tremendous battle not to lust after them.” Modest dress, the author explained, would prevent this calamity; but also, I noted, here were more men with self-control issues.
It all comes together. Islam, Judaism and Fundamentalist Christianity all agree that there is shame before God or man (or both) for a woman to uncover her hair. It leads to all kinds of frenzies of lust, though there isn’t complete agreement as to who will fall into these frenzies. The Christians are sure, and the Muslims seem to think that it is the men who will be unable to control themselves (and will “annoy” the women), while the Talmud leaves it unclear whose unbridled license results from the uncovered hair.
But what about women without hair?
Christian sites and the Muslim one quoted I Corinthians 11:
But I would have you know, that the head of every man is Christ; and the head of the woman is the man; and the head of Christ is God…. But every woman that prayeth or prophesieth with her head uncovered dishonoreth her head: for that is even all one as if she were shaven. For if the woman be not covered, let her also be shorn or shaven; but if it be a shame for a woman to be shorn or shaven, let her be covered.
Well, I’m not sure about the praying, but I have no plans to prophesy. The last part suggests that it’s an either/or proposition. Since it’s no shame for me to be shorn or shaven, I don’t have to be covered?
But what about those hordes of men who are going to fight that tremendous battle not to lust after me? Not to mention the cold weather. It’s back to the internet to find more ways to tie my scarves. And this time I won’t get sidetracked.
Saturday, April 5, 2008
- a trip to the library where I was able to find six books, including some good stuff and some good mind rot
- a massage
- a sauna
- knitting, during which I solved yet another problem in the Endless Sweater
- wonderful messages, both from a friend I love dearly and a couple of people I'd thought were just acquaintances
- an angel food cake from a neighbor
- dinner out! in a real restaurant! with real people!
- the dvd with the last episode from Flight of the Conchords
Yes, I long for sunny, sandy beaches and someone serving me drinks with little umbrellas in them. But until the snow melts, this is as good as it gets. Hope your weekend has started as beautifully.
Thursday, April 3, 2008
But even that isn't that simple. I feel well physically, except that I'll be on an errand and suddenly realize that the energy isn't there, as though someone had turned off the tap. Or that I find myself planning on just one errand instead of two or three. Or that I lie down after lunch and fall asleep so completely that I wake up with no sense of having slept.
On the other hand, I'm taking a walk again in the mornings, though I can't manage the hills that Jerry and I used to do every day and that he still does. And being able to go out at all is a treat that I appreciate.
Maybe physically isn't as clear cut as I thought; and psychologically is even more complicated. The shock of the diagnosis has worn off, mostly, though when I unexpectedly think of it, I have the same disbelief as at the beginning. Not denial so much as the horror of stepping on a stair that isn't there.
Days are easier than nights. I usually don't have trouble falling asleep, but 3:00 a.m. is not a good time. That's when everything I put out of my mind during the day comes crowding back in, like the statistics. Those are enough to destroy any chance of sleeping.
However, there's a short essay by Stephen Jay Gould, which cancer survivors hang onto. Check it out -- and if his take on statistics is off, don't tell me. He helps me get back to sleep.
Wednesday, April 2, 2008
It was his first time at the KCC. He’d just been diagnosed and was about to start treatment, and when I told him that I’m feeling really great these days, but that I’m due for another chemo on Monday, he asked, “What does it feel like? Do you get really sick?” The questions poured out of him. I know the KCC, and I’m sure the doctors and nurses had told him all of this, but as a teacher I know that sometimes you have to hear the same things several times from different people to grasp them.
The nurse pointed out that everyone’s disease and treatment is unique, so everyone reacts differently. She finished up with me, so I stayed on to chat with him while I waited for my results.
I told him that for me the first couple of days after chemo are the worst from the standpoint of nausea, exhaustion, lack of appetite, but that slowly I feel better. Then, about a week after treatment I sag physically and emotionally, and then slowly I begin to feel good again. Then it’s time for the next chemo, but there’s nothing that can’t be handled.
I asked, “What kind of cancer do you have?”
His voice held a mixture of shock and a kind of grim satisfaction. “Lung cancer. Inoperable.”
I thought, wow, this guy’s really sick. I said, “The important thing is that you’re in a good place. These people are fantastic, and they’ll do everything they can.”
He said doubtfully, “I suppose attitude makes a difference.”
I agreed, and started to say how important friends and family are – but I stopped. His words and body language suggested that he doesn’t have that kind of support. I felt an impulse to take him on as a project, and had to remind myself that I, too, am sick and need to spend my energy on myself. I compromised by saying, “I’m sure we’ll see each other again here, and I look forward to talking some more,” but he had already turned away and was staring back at the cartoons.
My wbc and platelets are not yet normal but have improved enough that the doctor said I can do anything as long as I stay away from sick people. I immediately went to the Y and worked out. It felt good.
Tuesday, April 1, 2008
You can't catch me, stripped down for action.