Wednesday, December 31, 2008


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.

Monday, December 29, 2008

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?

Friday, December 26, 2008


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.

Wednesday, December 24, 2008

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.

Tuesday, December 23, 2008

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.

Monday, December 22, 2008

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.

Sunday, December 21, 2008

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.

Friday, December 19, 2008

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.

Wednesday, December 17, 2008

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.

Monday, December 15, 2008

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.

Saturday, December 13, 2008

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.)

Friday, December 12, 2008

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.

Monday, December 8, 2008

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?

Thursday, December 4, 2008

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!

Tuesday, December 2, 2008

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.

Monday, December 1, 2008

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).