Superscrabble

I don't feel like ending the year talking about cancer, so instead I thought I'd explain the rules of Superscrabble, the game that Jerry and I keep trying to spread like a new religion.
We actually didn't make it up. If you haven't lost the little booklet that came with your game, under Variation--Rule 5 it says:

A player, at the start of any turn and before adding any letter to the board, may replace any single letter already on the board with one from his own hand which will form an acceptable new word or words. Any number of such substitutions may be made in a turn but only one letter at a time and only when correct words result from each individual change. No score is counted for the exchanges but letters thus acquired are scored in the usual way when added to the board at the conclusion of the turn or in a subsequent turn. This method of play tends to increase scores by permitting repeated use of high scoring letters or by making possible the formation of longer words.

In other words, if you have the Q but no U, and the word BUT is on the board, you can substitute an A, E, or I for the U and you're on your way to putting QUILL or QUEEN or QUITE, hopefully on a triple word space. It means that you can't do any long-term chess-like strategies, because by the time it's your turn again the board may have changed completely.

Russ has suggested a further variation of this, which we sometimes use: you get penalized two points for every trade that you make from the board, for the benefit of people who aren't used to playing Superscrabble. Of course, he also suggests that Jerry's penalty should be five points. Unfortunately, this usually doesn't help.

Happy New Year, everyone.

Eating again

I once had a teenaged Russian student. Dmitri's family had been brought over by the local synagogue,which was rather taken aback at just how secular his family was.
After the congregation had gathered for a Seder, Dmitri told me all about it.
"Very good food, Mrs. Germer, but strange. No ham."
"Dmitri, a lot of Jews don't eat ham."
"Strange.... No sausage, either."
"Dmitri, a lot of Jews don't eat sausage."
He looked at me and asked, "Bacon? Pork chops?" and when I shook my head, he exclaimed despairingly, "Jesus Christ, Mrs. Germer. What we eat?"

That's sort of how I feel these days. The nutritionist brought me a set of instructions, with a short list of "good" foods and a much longer list of "bad" ones. Naturally, I'll eat whatever is necessary to help me heal. But white bread? No whole grains? Meat is good, but veggie burgers made with beans are bad. Ice cream is good, but the nuts to go on top are bad. It's totally counterintuitive.

In other words, carbohydrates are okay as long as they're refined within an inch of their lives. No fresh fruits, no vegetables with fiber.... Jerry is telling everyone that we're on the Trailer Trash diet. It is amazingly hard to take everything that we've thought for years is healthy and scrap it, only to eat what we've sneered at.

It's just for a couple of weeks, and then they've promised I can go back (slowly) to eating what tastes right, and good.

But in the mean time, Jesus Christ, what we eat?

Home

Yesterday noon, just after Jerry and Max joined me for Christmas Dinner at the Hospital (greater love hath no husband and son than to eat overcooked beef and vegetables in a hospital room), I was sprung. The last tubes were pulled out of me, the last instructions given, and we went home to spend the last, and most wonderful, part of Christmas.
The doctor said that my recovery was "amazing." Very fast, very smooth -- exactly what he would have ordered if he could have.
Apparently, there were questions we weren't aware of at the time of surgery, though I vaguely remember the surgeon going over them. They just didn't register. The major one was whether the hole in the duodenum was related to the cancer. If it was, there was no way it could have healed. Its having healed so quickly proved that the perforation was not secondary to the cancer. (No suggestions as to why I got it, except that stress might have had something to do with it. Stress? Me? What do I have to be stressed about?)
The other was whether the cancer had weakened the surrounding tissue to the point that the patch wouldn't hold. But it did.
My thanks to Jerry for keeping the blog going while I was in the hospital, and to all of you for your love and support, which buoys me up and keeps me going.

December 23

Kris, the very competent and funny nurse, sat down last evening to give me a kind of reality check. She pointed out that abdominal surgery always dirty, with the possibility that pathogens can escape into the abdominal cavity, thus the heavy doses of antibiotics they have me on.

So far, no infections. I had my last chemo session on the 15th, the afternoon before the ulcer in my duodenum blew through. Yesterday, a week later, was my week off from chemo. I've had such an easy time tolerating the Gemcidobin that I've never had a problem with the nadir--the time at which the white blood cells are lowest in the treatment cycle and one's resistance to infection is greatest. Every drug has its own nadir. My latest one runs from around yesterday through the coming Sunday, with the lowest point sometime mid-week.

During this time, I have to be extra careful for any signs of infection around the incision, such as a fever or any other abnormalities.

This advice was of course discouraging. I wanted something like "You'll be home for Christmas," or at least, "Every day in every way you are getting better and better." But, sigh, sigh, I'll deal with it somehow.

A Mother's Christmas Blessing

My mother was famous for her inability to get along with technology. Every watch she owned stopped within a day. Parking garage machines refused to spit out tickets for her. What her presence did to the voting machines in her precinct in West Hartford remains a family legend (no, she was not in Florida in 2000--if she had been, the results would have been different).

So at 1:30 this morning I felt my mother's presence, not as angel wings beating sweetly around me, but in the form of two nurses huddled around my IV pole, passing yards of tubing back and forth as they tried to untangle the maypole.

"Let's see. The PICC line should go through the pump here, but it won't fit."

"Yeah, the switch clicks off every time. What about the port line?"

And so it went, with the pumps on the IV pole joining in the conversation, beeping and pinging like Artoo Deetoo gone berserk. Finally, I realized what was causing all this.

"Mom, enough already," I thought sternly. There was a sudden, blessed silence as the monitors settled down to normalcy. The nurses sighed with relief. "I knew we could get it to work," one said.

After they left, I smiled into the dark and quiet. Merry Christmas, Mom.

Saturday was busy

The best thing that happened on my fourth day in the hospital was Max, Anya, and Miles braving the snowstorm to come up from Northampton to visit (Warning: grandmotherly boast coming up). Miles,in a gentile mood, happily snuggled up to me on my hospital bed. It was incredibly therapeutic. He didn't react to the NG tube coming out of my nose or any of the other tubes and wires I'm hooked up to. His parents must have prepped him well. He even brought his own stethoscope, as well as two stuffed rats. When they left, he left Ritty Bitty (the small gray one) with me in case I needed a snuggle.

The rest of the day was also good, but tiring. They removed the catheter and decided I didn't need the leg wraps that pump up the circulation and keep me from getting clots. Two fewer systems to deal with.

Then a glitch. On my way back from the bathroom, the NG tube suddenly popped out of my nose onto the floor. Unfortunately, the doctor didn't take this as a sign that I no longer needed the tube and had the nurse insert a new one. To get the right length, you measure from the nostril to the earlobe to just below the sternum, in case you might have to insert one sometime.

The one bit of self-care I've been skimping on is the breathing exercises. Whenever I try any kind of Yogic breathing (pranayama), I cough, which hurts, so I give it up. They scold me a lot for not coughing, to prevent my lungs from clogging up. Now back on pain meds, I am under strict orders to cough, damn it. So I do.

A spa?

(Lucie hand-wrote this one from the hospital, then had Jerry enter it in the blog)

I've never been in a luxury spa, but from what I've read in the ads you see in health-related magazines, they have much in common with a hospital's intensive care unit (ICU). So if the demand slacks in the ICU maybe they should consider converting into a top of the line luxury spa, the quasi-medical type with people in white coats and official-looking machines. Of course, they'd have to change a few things. The personnel would encourage us to do 50 squats instead of stumbling around the nurses' station, schlepping our IV pole behind. They'd have to upgrade the patrons, as well. We're all far too gray and debilitated to fit the stereotypes who hang out in such places.

What they shouldn't change is the staff. You couldn't hope to meet warmer, more competent or flexible people anywhere. Ring the bell and a nurse here. If you don't ring the bell they still come around to see if your ice cup needs refreshing.

I got moved out of the ICU two days ago. In my new digs--a semi-private room--the help doesn't hover quite so intensely, but I still get good care.

How do I feel, aside from being blind-sided by this latest event? Well, for one, I feel this is the best place to be under present conditions. Aside from occasional wooziness and odd pains, I feel I am on a gradual path to recovery. As I look out my window, I'm glad I don't have to go out into the latest winter storm, but thankful that Jerry does.

With no wi-fi access in the hospital, I won't be able to answer your emails until I get back home, and don't yet know when that will be. But keep your thoughts coming. If you don't know my email address, it's the same as Jerry's but with an L, instead of the J (in his). Your emails and responses to the blog help immensely buoy my spirits. Please keep 'em coming.

A tradition missed

Jerry again (please don't abandon this blog):
Lucie has been moved out of ICU into a semi-private room. When I visited her last night, she was resting comfortably. Because she won't be able to eat through normal channels for a while, they inserted an IV tube into a vein into which nutrients were to be started today. When I asked the nurse how in the world they expected to get prime rib through such a skinny tube, she looked at me as if I maybe wasn't in the right ward.

Friends have provided indispensable support to us during this last ordeal and through the year. Thanks to the Shepardsons, I have eaten well during the last three nights. As I was filling out our annual Christmas letters yesterday, I had another reminder of our dependence on friends. For the past several years, Lucie and I have joined two other couples over brunch to write our Christmas cards. Having a set date spurs everyone into action and is a lot more fun than doing it by ourselves.

When we had finished up the cards and filled ourselves with goodies, we finished up the cardfest with another tradition. We opened the phone book and picked a name at random and sent this lucky person a card, with a short personal note.

A typical note might go something like this: "Dear Gomer, here we are once again in the season of joy. Well, Lawsy Mae is pregnant again, still no man in sight, and Luke got kicked out of reform school again. Oh, and the cow died last week, but we are fine and look forward to coming to visit you in July. There's only eight of us this year, so you won't have to find so many extra beds. Til then, ..."

We put the "til then" sort at the bottom, as if we had run out of space, so we wouldn't have to sign it. Alas, we discontinued this prank when the whole country got antsy about pathogens and other weird stuff being sent through the mails, not wanting the FBI coming to call.

Because of our latest emergency, Lucie and I missed this year's cardfest. Hope to do it next year.

And then...

Jerry reporting
Just when we thought things were going well, a bump. Lucie started having stomach pains around midnight Monday. By 2am the pains were so intense we packed up and headed for the emergency dept. of Cheshire Medical Center (if you have to have a medical emergency, 2am is a good time, since there is little or no traffic). Fortunately the roads were clear, a plus after the major ice storm of the previous days.

The time between our arrival and a plan of action was a seemingly endless sequence of tests and waiting. The E.R. was quite busy, for a Monday night, apparently due to victims of fires and a car wreck (we only heard snatches of conversation, in the general din of nurses scurrying to and fro. Anyway, a CT scan confirmed what the investigating MD suspected from Lucie's symptoms: a perforated ulcer, which was likely leaking gastric contents into the abdominal cavity. He said we might treat it with antibiotics, to stanch any possible infection, hoping the ulcer would heal on its own, or get more aggressive and go in surgically to see what could be done. We opted for the latter.

I left just before she was to be wheeled into the O.R. around 9:30am. The surgeon called me at home around noon to say the operation was a qualified success. They had patched the hole with tissue taken from somewhere else. Lucie would spend the night in the ICU for monitoring, which would continue for the coming days, to see if the leak from the ulcer had been truly fixed.

I visited her again in the afternoon and she was coherent, intermittently, still coming out of the fog of sedation. It snowed during the night and continues this morning, but I aim to go in to the hospital anyway and will report again when I know more. Thank you all for your continued support and encouragement through a difficult time of our lives.

Blue Nile and White Nile

In the Sudan, at Khartoum, the Blue Nile and the White Nile merge. For quite a while they flow side by side and you can clearly tell them apart. When I last flew over them, in the 60's, our pilot was apparently from Texas, because in a real Texas drawl he announced over the microphone, "Well, you can see the two Niles down on your left. You can tell them apart because the White Nile looks gray, and the Blue Nile looks just plain dirty."

Sometimes I feel like the Niles at Khartoum. On the one hand, I am healthier than I could ever have expected and feel as though there's no reason this couldn't continue indefinitely. Life is good.

On the other, and at the same time, I know that in reality it won't continue indefinitely. And then it's harder to feel that life is good.

The reason I keep thinking of the two Niles is that I can hold both of these emotions in my mind at the same time without either one diluting the other. It's not a matter of flipping back and forth; both are simply there, underlying whatever else I am doing or thinking at the same time.

When I stop to try and analyze it it's a weird feeling.

Ice Storm

Today the sun is out, but no picture taken with a little digital camera can do justice to how beautiful the trees are shining in the sun. Robert Frost said it, in Birches:

Often you must have seen them
Loaded with ice a sunny winter morning
After a rain. They click upon themselves
As the breeze rises, and turn many-coloured
As the stir cracks and crazes their enamel.
Soon the sun's warmth makes them shed crystal shells
Shattering and avalanching on the snow-crust
Such heaps of broken glass to sweep away
You'd think the inner dome of heaven had fallen.

(And the roads in our area are clear, and we didn't lose power.)

Bucket List

This ice storm was coming in last night, so it was a good evening to watch a movie, and Bucket List was one I'd avoided but decided I really was brave enough to take.
Actually, I enjoyed it. Watching Morgan Freeman's dignified/gracious bit and Jack Nicholson's bad boy act melded together was like hearing two jazz greats jamming together for the first time. Beautiful work.
On the other hand, the premise wasn't a comfortable one to watch: two men dying of cancer go on a world-wide trip to do all the things they'd wanted to do before they died. I'll spare you most of the cancer inconsistencies, because it was, after all, a work of fiction. (But there's no way that Nicholson's character's hair could have grown back that fast.)
I found myself thinking about the bucket list concept. Maybe because my own list would never have included all those testosterone-driven car racing and sky diving stunts, it's a short list. In fact, as I thought it over, I realized that throughout my life I've been fortunate enough to experience most of the things I would have wanted to, from big deals (I've seen the pyramids at sunset, heard JJ Johnson and Zap Mama at the Montreal Jazz Festival, tasted smoked monkey meat in the home of a paramount chief in Liberia) through those that everyone should have and appreciate (a long and happy marriage, children who bring joy to my heart, a fulfilling career) to those that are only special for me (I played one of the solos in Closer Walk With Thee at Walpole, taught myself to knit cables, and for a while at least was able to do many standing postures in yoga).
Generally, I don't want new experiences in the time left to me. I just want to be able to repeat some of the old ones. As often as possible. Except the monkey meat.

Toxic people

On the bike at the gym Friday I read articles in two magazines about what to do about the toxic people in your life: the coworkers who steal your ideas, the friends who tell everyone your deepest secrets, the relatives who compliment you in public by saying things like, "You don't sweat much for a fat girl." As I read along, nodding in agreement with the reasoned responses, I suddenly stopped pedaling as I realized that I simply don't know any toxic people.
In fact, from relatives to friends to casual acquaintances, I don't think I've had an interaction in the past year that is in any sense toxic (well, I suppose chemo is toxic, but it's supposed to be and besides, the nurses who deal with it are amazingly warm and cheerful).

So why is this so important that two magazines in a row think it's worth an article?
Maybe it's a city phenomenon which doesn't show up out here in the boonies.
Maybe it's age-related, and by the time you get to mine, all the toxic people have stewed in their own juices and disappeared. No, I remember some really nasty old folks in my past.
Maybe people are just nice to me because I have cancer and just by existing I bring out the best in people. I decided if that was true it meant was at least some good in this situation, finished my workout, and went on to the library.

And there I saw a real live example of a toxic person who single-handedly took care of my first two theories, an elderly woman here in Keene who was furious at the librarian because she wouldn't allow her to take out a book on someone else's card. The would-be borrower ripped the librarian up one side and down the other, almost screaming at her. When she finally stomped off, I sympathized with the shaken librarian and took out my books.

On the way home I started thinking, perhaps I should have tested out the third possibility. What if I had broken into the confrontation and said, "Excuse me, but I have cancer, so can I mediate for you because of course you will be pleasant to me?" Would she have stopped being toxic, smiled at me, and apologized to the librarian? Probably not.

But what if it had worked? Just think of the possibilities. I can see Cancer Surviving Mediator as at least a cabinet-level post. Do you think Obama would be up for it?

Early Christmas Present

I just got a call from Dr. Nickerson's office. My cancer marker, the CA19-9, is down to 40. Last month it was 61, down from 100 in October, 300 in September. This downward trend is exciting, but what's even more exciting is that normal people -- that means you -- have a CA19-9 of less than 39.
Dr. Nickerson has to admit that there is no exact test that shows just how healthy I am. The marker is indicative, as is the CAT scan, as is how I'm generally feeling. The last CAT scan showed no changes since June, and I feel good.
So, at least for now, I'm in great shape!

In memoriam

This weekend I heard the news about the death of a friend I never met. He had cancer of the bile duct (what I thought I had at first), and we e-mailed each other for several months, sharing comments on treatment, encouraging thoughts, and a lot of laughter -- I loved his reaction to my question about whether the bear repellent was to be sprayed on the bear or on yourself to repel the bear. Our conversations, obviously, went far beyond the disease that first linked us. I will miss him.

Why I am not a famous photographer

Simple. I always forget the camera. So you won't get to see the two wonderful Thanksgiving dinners, one with friends, one with family, both with incredible food, laughter, warmth, joy.
However, I did remember the camera for our trip down to Northampton to have a fancy brunch with Max, Anya, Miles, Cinda, and to bring Cinda back for a few more days with us.
This has been such a great visit, though we miss Rob constantly (and not just at dessert time).

Thanksgiving

The list goes on forever. You are all in my heart.
But most of all, I am thankful to be here to be thankful.

Whining again

November
Thomas Hood, 1844

No sun - no moon!

No morn - no noon -

No dawn - no dusk - no proper time of day.

No warmth, no cheerfulness, no healthful ease,

No comfortable feel in any member -

No shade, no shine, no butterflies, no bees,

No fruits, no flowers, no leaves, no birds! -

November!


There are times of the year I like better. I think I'm most thankful for Thanksgiving, because it makes the rest of the month almost worth it.

Jerry is in really, really good shape

We spent yesterday (Friday) up in Lebanon, this time for Jerry's appointments. Even though his Keene cardiologist had said his heart was healthy, he had the appointments at Dartmouth-Hitchcock-Lebanon for a CAT scan and to see the surgeon who had done the valve job four years ago. Especially so soon after the Keene appointment, he didn't see any reason to drive all that distance, but I insisted.
Most of the morning was actually spent waiting around for the results of, first the test to make sure he wasn't allergic to the dye they use in the CAT scan, then, the results of the scan, and finally to get in to see the cardiologist. I knitted and Jerry did crosswords.
After all that, the cardiologist said that while Jerry's aortic root is enlarged, it's no more enlarged than it was last year at this time, which was no more so than the year before. He says that if he were a betting man, he'd put money on Jerry's never having an aortic aneurism, and that probably there won't be any problem until Jerry's in his 80's when the valve may start to fail, and then they'll just replace it, maybe with something new and wonderful.
And in the mean time, there's no reason for the double checkups each year. Jerry can see his usual cardiologist in Keene and the two of them can talk about music every November (the cardiologist plays tuba).
So it's good news all around; definitely one more thing to be thankful for this year.

Three weeks on, one week off

Monday was my last day of the third cycle of Gemcitabine, and so far, so good. I'm actually gaining weight, though not yet to the point where I have to buy new clothes or think twice about what I'm eating. And it sounds almost un-American to be happy about a couple of pounds more. One of the nice non-side effects of the Gemcitabine for me is that it hasn't changed the taste of food or affected my appetite. If the worst that's happened is that I can't drink coffee or alcohol the way I used to, I can't complain. (Note to LDS friends and relatives: no, I am not sliding sideways into the Church! If I could drink a cup of coffee I'd be thrilled.)

We went in yesterday for Jerry's yearly cardiology checkup, and the doctor pointed out, as he always does, that Jerry is undoubtedly the healthiest person he sees all day. Everything is good; the valve is holding, the aortic root hasn't changed since last year, cholesterol is doing just what it should. So then the cardiologist, a family friend, asked how I was doing. When I told him that I was fine, he said that there's been such a change over the past few years, that now cancer is more and more treated as a chronic condition rather than a crisis.

It fits people dealing with cancer into the same category as those with diabetes or MS, for example: yes, you can die of it, but the real question is how do you live with it without its taking over.

Well, next week is my week off, so except for going in for bloodwork on Monday, I can forget the whole thing. And it's Thanksgiving week. And Cinda will be home, and we'll have almost the whole family together. You can't ask much better than that.

Status report

I thought it was about time for another status report, since I go along assuming that everyone knows just where I am on this journey at all times.
Physically: I really am doing amazingly well, so far. The stomach palaver is intermittent and never so bad that it needs the Tylenol plus codeine that I keep on the shelf just in case. Today, for example, I'm fine, and enjoying the feeling.
I'm able to do about whatever I want -- while I'm nowhere near the workout schedule I was on while I was gearing up for the surgery, Jerry and I still make it in to the Y for 25 min. on the stationary bike and a round of the machines three times a week. No, not very fast on the bike and not very heavy on the machines, but I'm there and able to do it. And I go to Yoga every Thursday evening, which is as good for my soul as my body. Jerry and I do our usual walk every morning, though mine is limited to flat ground, because my brace doesn't bend at the ankle. We go a ways together and then he does the steep loop on his own and I just walk around the neighborhood.
Just as well I do this, because I'm pretty sedentary the rest of the time.
I still don't have the stamina I used to have, and will suddenly lose energy as though someone had pulled a thread and everything leaks out. But a short rest usually takes care of that.
So that's physically. There's been a bit of a change in my psychological state that I find interesting, because it will probably continue as time goes by. That is that I've now beaten the odds. Most people with inoperable pancreatic cancer don't make it past six months. I was diagnosed in February. On the one hand I feel so well that I don't know why I shouldn't go on feeling like this for years. On the other, I know that it is literally a matter of time. As I look ahead part of me thinks that I have exactly as much time as everyone else in the world: right now, and the indefinite future. Part of me mourns what I will never know I've missed.

Me on my soapbox

Yesterday at the Y I got into a conversation with an acquaintance who'd heard about my situation. She offered sympathy and then asked, "How did you know you had cancer?" Without waiting for much of an answer, she told me that she's been getting a pain in her lung and she's sure it's lung cancer.
She doesn't dare go in and find out. She had a lot of reasons: she has body image problems and is scared to be seen in a johnny, she knows a couple of people at the local hospital and is afraid they'll read her records and find out about a hospitalization years back for mental problems, and most of all, she is afraid that if she has cancer all sorts of terrible things will happen, from chemo, radiation, and/or surgery to death itself.
Of course I went into cheer leading mode and tried to answer her fears. I pointed out that hospitals are used to people who are scared and do everything they can to make patients more comfortable as they go through tests and procedures. I said that if she told them she was unhappy in a johnny they would probably let her wear two. I said that no one except the doctors and nurses can access your records and even in a small town the hospital doesn't want unauthorized staff finding out and spreading information about you.
But mostly I was horrified that she was willing to spend her days worrying about this but wouldn't go in and get the tests to find out what was going on. For me, not knowing is much more frightening than any diagnosis, especially when you know that putting off the tests could be dangerous or fatal.
I may have come on too strong, but at least at the end she said, "Well, yes.... I really should go in. Maybe I will."

Sex

Now that I have your attention....
Actually, for some time Jerry has been after me to blog about sex in these troubled times. "After all," he points out reasonably, "It's a basic human drive, and one of the things that anyone touched by cancer has to worry about is what happens to the sex life."
Well, as you know, I want nothing more than to add to the sum total of human knowledge, and besides, he dared me to do it.
So here goes:

1. Yes.

2. Of course.

3. Usually.

4. That really depends on a lot of factors.

5. No, I wouldn't say that.

6. Never.

7. Only when the phone rings.

8. About what you'd expect.

9. With infinite tenderness and passion.

10. Why do you ask?

There. That was easier than I thought. Of course, I just put down the answers. It's up to you to figure out what questions go with them. Actually, it's more of a rorschach test than a blog entry, and believe me, your part tells a lot more about you than mine did about me.

Happy Birthday, Jerry

Which is really unfair, because he's been announcing loudly that he wasn't going to have a birthday this year. Too bad, fella. It's worth celebrating.

The best present -- for both of us -- were my latest CA19-9 results. The CA19-9 is a tumor marker. The test measures a certain protein shed by the tumor cells. The lower the number, the less protein is being shed, and the happier the patient.
Well, taDAH, my numbers have continued to go down, from over 300 in September, to 101 in October, to 61 this week.
Dr. Nickerson always reminds me that this marker is merely indicative, but the indications are going in the right direction.

When I looked up the medical literature on the test, I found one article on what it means for someone like me who had non-resectable (i.e. inoperable) cancer. Thanks to a typo in the article, there was a discussion of the problems "evaluating the respectability of pancreatic carcinoma," which made me think of the cancer up on a table with a lampshade on its head doing the hootchy-kootchy.

Election Day

Last February 20, the day we found out I had pancreatic cancer, I wrote in my journal, migod, if things are really bad, I won't even know how the elections come out.
And here I am, not only alive, but having had the chance to vote in this historic election. Dr. Nickerson told me again on Monday how well I'm doing, so it looks as though I'll have a good opportunity to watch as the political story continues to unfold.
No, it isn't that I want continued health and longer life just so I can participate in politics -- but I am so glad emotionally and philosophically that I was here to see this.

Chemo conversations

Yesterday the talk was all about the election, though, as usual when strangers get together there was little partisanship. What we shared was a feeling of relief that it's finally over combined with a feeling of equal relief that we'd all survived this far to see it.
I talked with one woman, though, who wasn't interested in the election. She'd been diagnosed with breast cancer in April, had gone through surgery and chemo, thought she was fine, and then they'd found some more spots. So now she's just started a three-chemo combination treatment plus radiation. What bothered her most was losing her hair. She was wearing a very nice scarf and full makeup, but she was clearly very depressed. "I haven't even let my husband see me without hair. I just couldn't. I wear these little nightcaps to bed."
Jerry said, "He wouldn't mind seeing you without hair, would he?"
"Oh, he says that he doesn't care, but I just couldn't. And now it's starting to grow back from the last time and I'm going to lose it again."
She was also worried about the radiation, and didn't seem encouraged when I told her how easy (comparatively, and for the breast) it is. "I don't know how I can go through it all."
When I found out that she would be at the Chemo Room for seven and a half hours yesterday, I felt a lot of sympathy for her. She was alone, no one to play Scrabble with, scared and depressed, and stuck there, tethered to the IV pole for an entire day.

And the Ugly

Happy Halloween.

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.

"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.

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.

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.

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?

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.

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.

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).

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?

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.)

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.

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.

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?

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.

Back into the trenches

This next week is a double whammy, with the ERCP tomorrow, regular oncologist meeting plus chemo (I hope, assuming that my WBC is high enough) on Thursday, and appointment with the orthopedic dr. on Friday for yet more tweaking of the brace. We might as well take a pup tent and sleeping bags and camp out in the lobby of the hospital. However, I'ver had a wonderful two weeks away from it all.
After googling, discussing with three doctors, and flipping a coin just to see what it would say, we decided on the metal stent. Googling has a slight preference for the metal stent, as do two out of three doctors, and all the coin flip showed me was that I still can't do it right. Skills I need to work on.
The main disadvantage of the metal stent is that it tends to grow into the tissue and therefore can't be replaced; but on the other hand it lasts longer, though how long is the big question. I gather that if it gets clogged they can still insert a smaller one to keep the channel clear.
And I really don't want to go through this every three months.
Book recommendation, not just for those who have family or friends going through cancer, but for everyone: Anticancer: A New Way of Life, by David Servan-Schreiber, is written by an MD/PhD who has survived two bouts of brain cancer. He goes through the research on complementary strategies: dietary, mind-body,social, and exercise, and shows how you can use them for general health, to lessen the chances of cancer, and to support the standard treatments if you have it. Much of the research is recent (within the past few years), and it includes European as well as American studies. Although, as usual, I went through it saying, "But I've done this stuff for years," it validated everything that I'm doing now to keep myself as well as possible for as long as possible.

Just a bit more politics

First of all, I just wanted to say to anyone who doesn't agree with my very-far-to-the-left political philosophy (hi, Amy) that after living in some of the countries I have, I'm always glad to be in one where we can debate, discuss, and disagree freely.

And in line with that, next week is Read a Banned Book week. Go to the Random House website (randomhouse.com/teens/firstamendment/index , and I'm sorry that I haven't learned how to do these links so that you can just click on them) for a list of books that have been banned. Some are obvious, I guess, but where do they get off on banning How to Eat Fried Worms or The Indian in the Cupboard?
So next week, or every week, make it a point to read a banned book. It doesn't have to be Ulysses. It can be The Da Vinci Code or Snow Falling on Cedars.

Enough of my political ranting. I promise to get back to the fun stuff now. (And while my WBC was so low that I couldn't go to band this week, I continue to feel great.)

A temporary sidestep into politics

Here's a letter I sent to our local newspaper.

To the Sentinel:

People criticize the choice of Sarah Palin as McCain’s vice presidential running mate on the basis that being governor of Alaska and mayor of Wasilla does not constitute major executive experience. While it is true that being mayor of a city of 6,700 may not prepare one to be a heartbeat away from the presidency of a superpower, no one can argue that it isn’t a wonderful preparation for being mayor of a town of 2,000.
Therefore, I would like to propose that Palin give up for now the idea of being vice president and, instead, run for mayor of Marlborough. I realize that there are a few problems with this idea: Marlborough has a board of selectmen rather than a mayor, Palin is not a resident of our state, let alone our town; and she might see this as a step down. Yet there are clear advantages for everyone in my proposal.
Think of it from her point of view. First, with no experience, it must be terrifying to think of dealing with educated, politically savvy world leaders. As mayor of our town Palin could gain the necessary expertise to deal with people who are as far from being yes men as it’s possible to get. We’ve honed our abilities to argue over years of debating the new school, so training her will be a no-brainer. By the time she’s finished a term with us, Putin will look like a pussycat.
But the advantages will run in both directions. In 2000, in Wasilla, she hired a lobbyist and was able to get $27 million in earmarks for her town, twenty times the national average. She could do the same for us, though since she has now come out against earmarks it would mean she’d have to flipflop again on them. Since we’re a smaller town than Wasilla, and we don’t want to be greedy, we would settle for a paltry $8 million, which would come out to a bit less than the $4,030 per person she was able to score. For that kind of advantage, I’m sure the selectmen would be willing to step aside temporarily.
And, since we don’t need a bridge to nowhere, or even to anywhere, after we’re finished with her (and that money) we’ll be happy to give her back to national politics. We’ll all be better off because of it.

Lucie Germer

More of Lonna and Dick's visit

We went to Canterbury Shaker Village on Saturday, and it turned out that they were having a sheep and wool festival.


If Dick and Jerry look doubtful, they probably felt better when they found out this was not lunch but a dyeing demonstration.


We also watched a sheep shearing/herding demonstration and all decided we want border collies.
And I bought some yarn. It's a beautiful hand-dyed green, and it doesn't go with a single article of clothing I own. Anyone want a Christmas present?

We went down to Easthampton on Sunday and ate lunch out with Max, Anya, and Miles. Somehow no one took pictures -- so you'll just have to imagine.

Monday Dick and Lonna left for their US/LDS History tour, meeting up with their group in Washington. I admire their energy!

Besides the joy of their visit itself, we had a nice vacation from thinking about cancer, partly because this was my off-week, so no chemo until next Thursday. Good.

Family visit

You may not hear much from me for the next few days. I'm hanging out with three of the most creative people I know -- and as I typed that I suddenly thought of just how many creative people I know. How'd I get so lucky?
My sister-in-law Lonna and her husband Dick are visiting this week. Their talents and skills are amazing, but I want to focus on the creativity piece.


Who would have thought you could make art on a kitchen whiteboard? Dick just casually did this.

I've decided that while skill, talent, and interest are all necessary, first you need the special way of looking at the world all these people have. There's Lonna's enthusiasm and the way ordinary scenes compose themselves into extraordinary pictures for her; or Dick's gentle but quirky way of looking at life; or Jerry's attitude of "suppose we tried this, and then we could ... and if it didn't work we can always try something else."


Dick and Lonna at the birthplace of Brigham Young. We deserve a medal for having found it. Talk about hiding things under a bushel.

We're having a wonderful time. I really do wish you were here.

Time for More Jokes

Top Ten Ways To Know You Are A Cancer Survivor
10 Your alarm clock goes off at 6 a.m. and you're glad to hear it.
9. Your mother-in-law invites you to lunch and you just say NO.
8. You're back in the family rotation to take out the garbage.
7. When you no longer have an urge to choke the person who says, "all you need to beat cancer is the right attitude."
6. When your dental floss runs out and you buy 1000 yards.
5. When you use your toothbrush to brush your teeth and not comb your hair.
4. You have a chance to buy additional life insurance but you buy a new convertible car instead.
3. Your doctor tells you to lose weight and do something about your cholesterol and you actually listen.
2. When your biggest annual celebration is again your birthday, and not the day you were diagnosed.
1. When you use your Visa card more than your hospital parking pass.

Doctor day, including perhaps more info than you want

We went up to Lebanon to check in with the surgeon and oncologist at DHMC. Both agreed that I'm doing well. The surgeon promises that within a year I'll just have a white line down my middle. The oncologist spent over 45 minutes answering questions and clarifying things for us. He agrees with the treatment that the Keene oncologist has started me on. The regimen of Gemzar I'm on isn't the newest treatment, but it consistently works as well as, or better than, the newer ones. I asked specifically about combination treatments, and he said that the only one the FDA approves does add to longevity in a statistically significant manner -- ie it adds two weeks of survival time, at the cost of diarrhea and an itchy skin rash. Well, it would seem even longer.
We asked about the feasibility of taking a week's vacation next winter, and he told us to go for it. So we're daydreaming about somewhere warm.
Jerry asked the hard questions, the ones I didn't dare ask because I didn't want to upset him: how long? and how? They won't say how long, but the surgeon, at least, was talking in terms of years rather than months. He said that even from looking directly at the mass it was impossible to tell what was tumor and what was scar tissue. It's even possible, though unlikely, that it's all scar tissue and I'll go on indefinitely. (And this is from a man who knows his way around the giblets.) What's more likely is that there is still some cancer left, but that the continuing chemo can keep it under control for some time to come.
The oncologist described death from pancreatic cancer as a kind of "dwindling away," with increasing loss of appetite and sleeping more and more. The way he talked about it, it sounded as though there are worse ways to go.
I'm not including all this information because I expect we'll need it any time in the near future -- as I said above, both doctors seemed to think that I have years left. Call it (literally) morbid curiosity.
And now I can go on and think about other things.

Thanks, Amy

My niece Amy has an occasional piece in her blog which she calls "Favorite Friday." Well, it isn't Friday, but I borrowed the idea for a "Wonderful Wednesday." Over the weekend I did the first jelly-making I've done all year (actually, salsa, rosemary jelly and pear-ginger jam), all from the garden. They're shown against the sunflowers Cinda sent for our anniversary.
Jerry sometimes has to remind me to "live normally", and putting up preserves has been a happy part of my normal life since 1974. I've obsessively kept a record of every bit of preserving I've done in all those years, including the totally unsuccessful Violet Jam which tasted the way cheap perfume smells.
Today was chemo day, and because my WBC was out of whack they didn't give me a full dose of the Gemzar. I feel fine; they were just being overcareful.
Jerry won the Scrabble game.

A little hope -- you can help

Several friends have sent me links to reports of new research on pancreatic and brain cancer, in which the sequencing and problems with the responsible genes are examined. Check out the following links for better explanations:
http://www.hhmi.org/news/vogelstein20080904.html
http://www.reuters.com/article/rbssHealthcareNews/idUSN0437308620080904?pageNumber=2&virtualBrandChannel=0

This is very early stage work, but it gives the researchers a new way of looking at these cancers (and possibly others) and may lead to earlier diagnosis and better treatments.
You know the statistics. Pancreatic cancer is the fourth leading cause of cancer death in the U.S.
The National Cancer Institute spends less than 2% of its budget on pancreatic cancer research.

The closest we have to a Poster Boy for pancreatic cancer is Patrick Swazey, who is still alive, though Dith Pran, Randy Pausch, Michael Landon, Jack Benny, Rex Harrison, Donna Reed, Henry Mancini, Luciano Pavarotti and many other famous people died of it. The problem is that pancreatic cancer generally kills so quickly that no celebrity is around long enough to raise public awareness, the way that Christopher Reeves did for brain injuries or Michael J. Fox has done for Parkinsons.

So we need you. Please take a moment to help advance research seeking a solution to
research on early diagnosis and treatment of pancreatic cancer.
Go to: http://www.pancan.org/Public/take.html and sign the petition to your senators and representatives.

As you know, I don't usually stand up on a soapbox or wave banners. But with the news about the latest research, this sounds like a good time to try and get our representatives to pay attention and put some funds into a good cause.

Chemo again; stent choice

Back on the Gemzar. I wasn't sure how I'd react even though I've had two rounds of it already. I had a heavy dose with the Taxotere at first, and then a very light dose with the radiation. I feel like Goldilocks with the present, medium dose. They told me that this time I would possibly get flu-like symptoms after the first two times, but two days after the first one I feel fine. Yesterday I swam in Stone Pond and went to Yoga (yay!), and I've had no fever, aches and pains. It's good to feel good.
Looking ahead, the main thing to worry about is white blood counts and platelets, but I'm not even thinking about them yet.

Yesterday we went in to see the GI doctor about replacing my stent, thinking it would be a simple matter of just setting a date. Not so simple. Bile duct stents come in plastic or metal, and we spent a lot of time discussing the pluses and minuses of each. The plastic stents have to be replaced every three months or so forever; if they aren't, I'll get major infections. (Any stents fill up with what he elegantly called sludge.)I had a taste of what can happen last time, though maybe I shouldn't have tried to get five months out of a three-month device.
Metal stents last longer, but Dr. Krishna discouraged us from going that route. He pointed out that they generally last 6-12 months, and they can't be replaced, though it's possible to insert another stent into the first one. You can't do that more than once, though, so the life of the stent, and the patient, are limited by the technology as well as the disease.

So I plan to go in for an ERCP and a plastic stent on Sept. 29.

By the way, we asked Dr. Krishna about curcumin, and he said to go ahead -- and that his mother had always said that turmeric was good for almost anything that ails you!

Forty-one lo-o-o-ong years

They don't really seem long. Twice that wouldn't seem long. Or else, they feel like the way it's always been and always should be.
Music, laughter, good food and good loving.... Though when someone asked us what the secret to a long marriage was, we said in unison, "Good fighting," which seemed to confuse the person. "You don't look like you ever fight."
With all of our travels, we don't have many artifacts that could symbolize our marriage, but the rocking chair comes close.
In Liberia, when I was pregnant with Max, Jerry asked if I had any cravings, and I told him a really comfortable rocking chair. Using nothing but a matte knife, he created this:
Since then it's been in our living room wherever we've been. It's been my refuge when life gets rough, and a place to unwind. And of course it rocked Max and Cinda when they were little. (Luther, who scanned these pictures, suggested that Cinda will kick me out of the family for this one. The one of Max which I didn't include was even worse.)
It's been a place of relaxation, comfort, and support throughout the years. Like our marriage. Jerry and I have cooperated on refurbishing it at intervals. And, like our marriage, it continues to be able to hold anything.

Actually, it isn't that much fun

Next round of treatment starts tomorrow, and I thought I'd give my good attitude a break today.
You can't imagine how much I'm not looking forward to going back on chemo. I remind myself that first of all, it helps. People on Gemzar have less pain, better quality of life, and greater longevity. Second, Gemzar seems to have (for me) minimal side effects. I was on a heavier dose when I was taking that and the Taxotere, and generally felt fine. And finally, at least I feel as though I'm doing something.
But I don't wanna. So there.

Easy looking hard; hard looking easy

A wonderful Labor Day/anniversary/getaway weekend at our favorite inn, Abbott's Glenn. Besides the usual being spoiled and eating wonderful food, there were especially interesting fellow guests.
I found myself sitting next to a heavy machinery operator at dinner and, not knowing a thing about operating heavy machinery, I asked him one of my favorite questions: in your job, what is easy to do but looks hard to people who don't know anything about it, and, conversely, what is hard to do but people don't appreciate it because it looks so easy?
It turns out that going straight up or down a steep hill with an excavator is actually easier to do than it looks, partly because the machine has treads which hold it in place, but also because you can use the scooper on the end to balance the weight of the cab and engine, or dig the scooper into the ground to keep yourself from sliding. (Of course, if you start to slide sideways it becomes something that looks hard and really is hard.)
What looks easy but is actually hard is setting the excavator in the middle of a flat street and digging. Under the street are water and sewer mains and all kinds of pipes and cables that you have to avoid; and up above are the power lines that you don't want your scoop tangled up in. It's fiddly work; but from the outside it looks as though you're just sitting there.
I found this fascinating, and spent parts of the rest of the weekend thinking about how the questions apply to me.

In my profession, what's easy but looks hard comes from everyone's first question: what in the world do you do on the first day when no one understands anyone else? All I can say is that this is my absolute favorite part of ESL. In the first class I just make it clear to the students that they can learn another language, that it's going to be fun, and that I won't ask them to do anything that's beyond them.
What looks easy but is hard comes about a third of the way through the year, when all the ground rules are set and we've agreed on who is boss, and the class just hums along. That's when someone usually says, "But those foreign students are all so hardworking and dedicated. You never have any problems with them, do you?" They don't see all the hard work that got us to that point.

What about my present situation? What's easy but looks hard is when the nurse "accesses my port", ie. punches a needle into my chest to draw blood or put in the chemo. It usually doesn't hurt, but Jerry can't look when they're doing it.
What is hard but looks easy is having to tell acquaintances about my having cancer. By now, everyone important to me knows, so it shouldn't be hard to tell people I don't care about. But I hate seeing the expression coming across their faces (omigod, that's terrible, what do I say to her, that's one of the bad ones, but she looks all right), so I find myself trying to smooth it over for them. I have it down to a science: a few matter-of-fact but optimistic statements, and then a graceful turn of the conversation. But it is painful to do.

What about you? In your life, what do people admire that (for you) is really a piece of cake? What, on the other hand, do others take for granted that you really have to work at?

Back to the medical establishment, again

Now, that is a really unfair title. Before you start thinking of horrible emergencies, I'd better say that we've had three appointments in the last two days, but they were all "normal" -- the kind of upkeep that everyone has. Jerry, complaining every step of the way, went in for tooth cleaning and checkup, and I had my eyes checked and saw the orthopedic doctor about my ankle and brace. It's a relief to do this kind of thing instead of all the major, scary, and/or painful stuff that the medical establishment usually makes me think of. At this rate, I'll even be looking forward to my Pap smear.

Jerry's teeth, as always, are fine. My eyes are aging and my prescription has changed, and the brace, after yet another adjustment, is slightly more comfortable than it was. The orthopedist promised to make it work. I hope.

I had a kind of green banana moment, though, as I tried on frames while I waited to see if the optometrists could fit the new lenses into my old frames.(By the way, did you know you can again get cats-eye frames with diamonds on the corners? They were tempting. My mom wouldn't let me get those for my first pair of glasses, and here, finally, was my chance. I tried them on, but unfortunately my mom was right. Really ugly on me.)

However, here was my predicament. Frames now cost from $150-$400. Considering everything, how much would I pay for new frames? Suppose they were really gorgeous (not the cats-eyes)? What if they came with a life-time guarantee?

Luckily, I can get the new prescription in my old frames, so I don't have to worry about it. And in any case and no matter what my situation, I can't imagine spending top dollar on eyeglass frames.

Unless they had real diamonds.

curcumin dreams

Wikipedia says it best: Curcumin is known for its antitumor, antioxidant, antiarthritic, anti-amyloid and anti-inflammatory properties. , which pretty well takes care of everything. In India there are bandaids with curcumin on them to speed healing, and I've read of curcumin's use in helping rashes and acne. In cancer, it works primarily, as far as anyone knows for sure, by slowing inflammation and speeding apoptosis. The latter is programmed cell death, which is what you want for cancer cells; I always imagine bubble wrap with giant fingers popping it. (What does apoptosis make you think of?)
There are a few problems with curcumin. It isn't absorbed well by the body, so that even with people taking 8 grams/day (and they have my admiration) the amounts showing up in the body aren't large. There's some slight evidence that mixing it with liquid, especially fats, helps the bioabsorption. I think of hundreds of generations of East Asian women frying up the spices in ghee as they cook dinner and sigh at modern science, which wants everything encapsulated and measurable.
The other slight problem is that even when it's absorbed it doesn't necessarily work, which puts it in with most other pancreatic cancer treatments. But it's worth a try, and it's fun to play with.
On the other hand, both the hundreds of generations of East Asians (and Moroccans, and Catalans) who've eaten turmeric regularly with no problems as well as those volunteers who ate the 8 grams a day have shown that it has as few side effects as anything else.
What this means for me is that I went to the Vitality Shop, our most knowledgeable source for alternative and complementary supplements. Susan suggested a two-pronged approach: supplements of almost pure curcumin plus adding turmeric to everything possible, on the basis that the other stuff in turmeric might either be what works or help what works do better. Luckily we like Indian food. Recipes will follow as I find some good ones.
In the mean time, I can tell you that you can sneak 1/2 t of turmeric into a smoothie, but any more than that and you'll understand just why there aren't any recipes for strawberries in turmeric sauce out there.