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?