Green Bananas Cancer Blog

Sad news

2010-08-19T11:12:00.003-04:00

I'm sorry to be the bearer of such sad news, but with a heavy heart I report that Lucie passed away peacefully in her sleep last night. Her family was around, talking, eating, laughing and looking at pictures, and I think it was a warm and comforting setting in which to let go. Thanks to friends, family and "virtual" friends who have all shared in and been part of her story.
I am including her obituary, although it's impossible to sum up such an amazingly beautiful life in a few paragraphs.

The Keene Sentinel
August 19, 2010
Lucie C. Germer

Lucie Clare Germer, 67, of 112 Pleasant Street, Marlborough, died at her home from pancreatic cancer, August 18, surrounded by her beloved family.
She was born in Arlington, Mass., May 21, 1943, daughter of Laurence L. and Lucia F. Barber. She spent her youth in Brazil, Turkey and Libya, following the moves of her father, a public administration consultant for the United Nations. She attended high school in Libya, and went on to obtain her BA at the American University of Beirut, Lebanon. She returned to the U.S. to obtain her MA at UCLA.
While working as an English Language instructor for U.S.A.I.D. in Somalia, in 1967, she met her husband, Jerry, who was training Peace Corps volunteers there. They were married in Mogadishu in September, 1967.
She returned to the U.S.A in November of that year to Salt Lake City, Utah, where she taught English to non-native speakers, as well as courses at the University of Utah.
After her husband, Jerry, obtained his architecture degree, the couple moved to Monrovia, Liberia, where he worked for an international architecture firm and she taught English at the University of Liberia. Their first child, Max, was born in Liberia.
The couple later returned to Salt Lake City, where their second child, Lucinda was born and Lucie began studies leading to a Ph.D in Anthropology from the University of Utah. The Germer family spent 1983 in Costa Rica, where Jerry pursued research in climate-responsive design and Lucie completed the draft of her doctoral dissertation.
The family returned to the U.S.A., where they made their home in Marlborough, NH, where Lucie taught English as a Second Language in schools in the Keene School District until her retirement in 2004. She took up trombone during this period and enjoyed playing it in the Westmoreland Town Band for 18 years. As a result of her enthusiasm playing with the band, she co-wrote a book with Jerry to encourage other adults to get involved in music making. She also wrote two published books dealing with English as a Second Language.
Lucie is survived by her husband, Jerry, a son, Max and his wife, Anya, and their son, Miles, of Florence, MA, a daughter, Lucinda and her husband Rob, of Seattle, WA, and a brother, Luther Barber and his wife, Miriam, of Needham, MA. .
Lucie wanted to be remembered by the words of Edith Piaf, Non, je ne regretted rien (no, I regret nothing). A memorial service in the manner of a Quaker meeting will be held at 3:00pm on Wednesday, August 25 at the Marlborough Community Center, Main St., Marlborough, NH. A second service will be held for the family’s many relatives and friends in Utah at a later date.
The family requests that, in lieu of flowers, contributions be made to the Pancreatic Cancer Action Network, www.pancan.org.

update

2010-08-16T15:18:00.004-04:00

Lucinda guest blogging here, I thought I'd give you all an update. Since the last post Lucie has declined pretty significantly. Fortunately she is in no pain, and at the moment resting comfortably. Over the last 48 hours she has gotten increasingly disoriented, confused and agitated. Last night was a tough night for sleeping because she was moving around and sitting up quite often, and talking at regular intervals.
The hospice nurse put her on a new drug regimen that seems to have helped with the restlessness, and she got a massage from a hospice volunteer which I think she enjoyed. There was even an impromptu singing session with Mary, myself and the hospice nurse, and Lucie sang along.
She still has moments of clarity, and smiles when you walk into the room. Sometimes she'll be sleeping and have a huge, beautiful smile on her face, so I think she's having good dreams.
As always, thanks to everyone for your love, care and support. I'll keep you posted.

How it feels from this end

2010-08-13T17:58:00.002-04:00

Well, the latest on the bed project is that Jerry, being Jerry, has McGuivered a makeshift bed out of an old mattress, coffee table and some plywood so he can sleep next to me in the hospital bed. We don't know if this will work yet, but we're hoping it's a good solution.

I've been feeling low. Not only does my voice go in and out of focus, but I'm having trouble keeping any kind of focus. When I try to stand up, I'm like a marionette with no strings. Yet, at the same time, the couple bites of quesadilla I had for lunch were delicious, so that's how it feels from this end.

Cinda has been helping me write this. I appreciate her doing so.

More later.

How to Visit

2010-08-12T17:10:00.000-04:00

There are a few rules.
1. Call ahead to set up a time.
2. Don't stay long.
3. Try not to bring up old business if it's something that only you remember. You may want to bring closure or solve an old problem, but this is not the time.
4.What should you bring? Find out if the person you're visiting likes flowers, or chocolates, or food. Maybe they don't want the casserole.
5. Decide who the visit is for. If it's for you, and this is fine, think about what you're going to say. If the visit is truly for the person you're visiting, maybe the simplest thing to say is just I love you, I'll miss you.
6. "What can I do" is the big question everyone wants to ask. And let's face it, in the modern world there isn't much. The important thing is not what you can do but that you can be there. This is harder than it seems.
Last, there is no last. Whatever you say, however long you stay, it's never enough, so keep it short.

hospice and the bed

2010-08-08T19:20:00.002-04:00

the bed is the first thing that hospice brings you. it isn’t necessarily the most important thing, or even what you need first. I’ve decided it’s a symbol. you have crossed this dividing line, and now you need a bed in the dining room.

the man who brings it in and sets it up is efficient and cheerful. he keeps saying,”now this is a feature that every bed should have, not just hospice ones.”
what everyone who comes through the dining room points out, though, is that the bed's too small. "are you both sleeping in that?"

no,we're comfy and cozy, upstairs in our queen-sized bed where we belong, him on the left,me on the right, and we want to keep it that way as long as possible,even if it isn't perfect.

we may not have crossed that dividing line, but we are clearly there.

everything takes a long time

2010-08-05T17:23:00.003-04:00

it's the loss of function in my right hand that's been giving me trouble today. somehow or other, connected with the fall on tuesday night and the dislocated shoulder i stopped being able to grasp anything with my right hand -- i can't push buttons, then ewspaper slides through my hands, and we won't even talk about how long it takes to go to the bathroom. thank heavens for pull-up pants.

i'm typing this left-handed, thus no caps. because of my english-teaching background, skipping caps and parens makes me feel somewhat wicked.

how else do i feel question mark. everything not only takes longer but is very tiring. i don't feel.... right.

i cling to my family and friends, even those of you i don't know.

The latest excitement

2010-08-04T17:00:00.002-04:00

After getting back from the hospital on Tuesday night, everything gets blurry. About 2 o'clock in the morning I got up to go to the bathroom and stumbled and fell, hitting my shoulder. We thought it was broken. After calling Hospice and the ambulance we (Jerry, Cinda & Rob) went to the ER where eventually they discovered that my shoulder was dislocated. No other injuries. They put it back together (like Tinker Toys) and I'm in no pain now.

It's been a surreal day, with everybody taking naps whenever they could and a lot of loving conversation. Hospice has been around with bed, cane and commode (hell of an album title) and I continue to feel pretty well and surrounded by your love.

Update

2010-08-02T16:41:00.003-04:00

Hi there, this is Lucinda (Lucie's daughter) guest blogging for Lucie while she is recovering in the hospital. The good news is that she is resting (somewhat) comfortably in recovery, and should be released within a day or two. The bad news is they could only perform part 1 of what was supposed to be a 2 part procedure. Part 1 involved installing a drainage tube in her stomach to ease the blockage, while Part 2 would have established a feeding tube into the small intestines. Unfortunately they couldn't find a location in the small intestines that did not have cancer cells, so Plan B is to use her existing port that had been used for the chemo as a delivery for nutrition. We don't know anything more at this point but we'll make sure the blog is updated as we find out more information. As always, thanks to all for the continued support and concern.

Wonderful food, wonderful fantasy

2010-07-30T09:23:00.004-04:00

Sometimes I really miss my mother. When we were at a restaurant, she used to take joy in reading the menu aloud. "Stuffed shrimp," she'd say, drawing the words out sensuously. "Gazpacho.... veal parmigiana...." She could make a menu from Appleby's sound like the richest of food porn.
Just think what she could have done with your posts. We'd have all been rolling over in the latest stages of a heart attack.

I've spent the past couple of days wishing it were possible to go through the lists item by item, savoring every bite of every dish. Are you familiar with Jon Kabat-Zinn? He's a professor emeritus at Harvard who specializes in bringing Western medicine and Eastern zen and yoga together. I saw him do his "raisin exercise" in which participants take several minutes to eat a raisin, experiencing the texture, smell, taste, memory of the one tiny dried fruit. It's amazing how vivid the experience is. I'm imagining going through the list of posts in that way, truly losing myself in all those glorious tastes and textures. Wonderful!

Reality hasn't been quite as great, though I've had sushi, a BLT, and chocolate brownies, all of which tasted much better the first time. I'm looking forward to a lobster roll Saturday and bagels, lox and cream cheese Sunday. Well, a bite of each.

And they will taste even better because of the company. Cinda and Rob (daughter and son-in-law) fly in tomorrow, and they plus Max, Anya and Miles (son, daughter-in-law and grandson), and Luther and Miriam (brother and sister-in-law) will all be here on Sunday. I checked out the Roger Ebert blog on not eating or speaking in which he said he missed the conversations most. I am so lucky to have this weekend of good food and good conversation coming up.

The Game -- The Last Supper

2010-07-26T10:08:00.002-04:00

You know the premise -- you have one day left to live and you can eat anything you want for your last meal. There's even a book where famous chefs tell their dream final meal, usually something simple that Mama used to make.

I want to change the premise slightly. Just suppose that you know that next Monday you'll have an operation that will relieve your symptoms and probably extend your life. The downside is that after it you won't be able to eat anything that isn't liquid or pureed.

What would you eat during these few days? To make it easy for you, in the game you'll be able to digest anything up until the operation. After it, your nourishment will be taken care of through a tube into your intestine.

I've been making a list. Some things, like hot buttered popcorn, aren't possible right now. Others, like crispy fried chicken, I haven't eaten or wanted to eat for years anyhow, but there are still a lot of foods I'll either cram into the rest of this week or dream about:

fried oysters
a BLT with tomato fresh from the garden
anything with beans, maybe especially Gallo Pinto (a Costa Rican dish of rice and beans)
any cake or pie made by my son-in-law Rob
a portobello burger with barbecue sauce and blue cheese
a grilled vegetable salad, veggies from our garden
bruschetta
an old-fashioned toasted cheese sandwich
samosas, because we had them at our wedding
beerbutt chicken with lots of garlic
souvlakia with my special sauce

Well, you get the idea. What I'd like from you is more suggestions, because I'm sure I've forgotten some of my favorites, and I'd love to hear yours. I'm throwing it out to you -- what would you like best?

More nuts and bolts and logistics

2010-07-25T08:40:00.002-04:00

We met with the second surgeon on Thursday, and nothing is as simple as you expect it to be. He agrees that just the draining tube from the inside of the stomach isn't a good option. He goes with the two-tube solution (Jerry's comment: mygod, you're going to look like a french horn with all those tubes).

However, he stressed that this is risky on several counts. First of all, getting into the stomach and siting and securing the tube is going to be difficult. Second, there are multiple chances of infection, slippage, and other things going wrong. And finally, I'm in nowhere as healthy a state as I've been before for previous procedures. However, he seemed optimistic, and he's done this multiple times before. I got the feeling he was looking forward to it.

I'm not, exactly, though the options are rather limited. If we do nothing, basically I continue to starve. Between not being able to eat much and throwing most of it up, I'm down to 111. My happy weight was about 125. Dehydration is also a potential problem.

Because they have to acquire some new equipment they weren't able to schedule the surgery until Monday the 2nd, almost exactly two years since the unsuccessful Whipple, but if the equipment comes in earlier and there's an operating room free they've promised that they'll fit me in sooner.

How do I feel about all this? I have faith in the doctor and the backup team. I certainly don't want to keep on hurling every day. And Jerry and I agree: what we want is the best quality of life for as long as possible. As long as there's a chance for this, we want to take it.

Heading into the next stage

2010-07-21T09:25:00.002-04:00

The beginning of this week has been crowded with doctors' appointments. First, on Monday we met with the oncologist and all agreed that the FOLFOX hasn't helped, and has, in fact, left me worse off. To my immense relief I'm no longer on the FOLFOX or any chemo. We discussed Clinical Trials (as far as I can find out, I'm not eligible for any) and further types of chemo. Dr. Nickerson is against them, partly because they're a third line of defense and likely to be more debilitating and less helpful than what we've done, and partly because much of what's dragging me down now is the blockage between upper and lower GI tract, which wouldn't be helped by a new chemo.

Because of this, we decided it was time for us to call in Hospice. It's a funny feeling. It means that you can no longer hang onto the tiny bit of denial that says, "It's been great so far. Why can't it continue indefinitely?" Indefinitely becomes bounded, though of course it always was.

The Hospice nurse came in yesterday and turned out to be both warm and efficient. We don't need and may never need the full range of services they offer, everything from getting me a hospital bed if and when I need one to Reiki. I'm going for the massages, I think.
It actually feels good to have this in place, like having a guide and well-set-up catering service when you're going on a tour to an unknown place.

The other problem we talked about with Dr. Nickerson was the intestinal blockage and its effects, which are fairly constant nausea, daily vomiting, and regular constipation (if constipation can ever be regular). He recommended a tube into my stomach to drain off what doesn't get through to the intestines, and set us up to see the surgeon, who agreed.

But yesterday we saw the GI doctor who said that he didn't recommend this, that various mechanical problems would make it risky for infection. What he thought should be done is a two-tube solution, with one going into the stomach to drain it, and another going into the intestine below the blockage as a feeding tube. The three doctors (oncologist, surgeon, gastroenterologist) will get together some time in the next few days to decide what's best.

What they won't give me is any kind of formula that balances quality and quantity of time. I find myself looking at their body language and where their eyes go for some kind of hint. Meanwhile we wait.

I wish I weren't writing this. I've read several blogs where people with cancer get to this point and decide to stop blogging. I want to continue as long as I can, though I certainly wouldn't blame anyone who stopped reading because it's not likely to be as upbeat as it's been. But I'm curious. I want to record what this last stage is like and share it with anyone who has ever wondered....

Onions, continued

2010-07-16T17:16:00.002-04:00

My multi-talented and warm and thoughtful friend Lin sent this haiku:

Beneath onion layers -
a lovely light shining through.
The beauty of you.

And my equally wonderful friend Nancy suggested ways for me to expand the onion metaphor -- is each layer the same color and consistency as the one before it? Do I react to each absence in the same way? And what if the metaphor is wrong, and there is something at the center, after all?

Bumps in the path

2010-07-13T09:09:00.004-04:00

As you've no doubt gathered, for the past couple of weeks I haven't been at my best. I had to miss a session of chemo, and this time when I went in I brought several new and continuing symptoms. My blood counts were good enough for me to have the treatment, so while I was in getting the chemo they set up a CAT scan for me, also yesterday. It made for a long day, but it was good to get it done. Dr. Nickerson called later to say that the protrusion on my abdomen was probably not due to fluid build-up, the new tumor, or the hernia, but was localized in the stomach. Apparently nothing is getting through. He's setting up an appointment with a surgeon to see if they can put an NG tube down my throat to relieve the stomach, or possibly some sort of permanent opening into the stomach to relieve it as necessary. I'll keep you posted.
Came home and threw up five times last night, which when you consider that I was on two different kinds of anti-nausea meds must be some kind of record.

Meanwhile, I feel these days as though the characteristics that make up my personality, my self, are being stripped away as you'd peel an onion. Each layer that goes is a basic, though maybe not crucial, part of me.

There are the little things: coffee, red wine, chocolate. When I lost coffee, I lost a focus for thinking, and a special link to sociability. Red wine gave me those as well. For years Jerry and I have had a tradition of a piece of dark chocolate and some more wine at the end of dinner. That tradition is gone.
Each of these small tastes opened me up to years of memories which seem faded now.

I don't enjoy food. I don't want to cook, don't like the smell of food cooking, don't want to eat what's on my plate, feel immediately bloated. Is this what teenaged girls feel when they have anorexia?

I have lost hatha yoga. There are too many poses I cannot reach or hold. I have lost pranayama -- whatever is pressing on my abdomen makes deep breaths painful. Yes, I can still meditate, but the fatigue tends to take over and I fall asleep.

The latest to go, I think, is playing the trombone. Not only do fatigue and deep breaths get in the way, but the pressure on the abdomen makes me throw up. We played a concert down the hill here in Marlborough last week, and mid-way through I barely made it to the restroom.

I feel as though along with these tastes and activities, I am losing my zest and my appetites for all of the things I used to love. I don't even read as much as I used to. I feel as though I'm becoming ... boring.

I was supposed to have chemo today....

2010-07-07T14:15:00.002-04:00

My white blood counts turned out to be too low, so they rescheduled the chemo for next week. This isn't unusual, by the way, just a bit of a surprise.

I wasn't especially looking forward to the chemo. I may have mentioned that FOLFOX is not my favorite form of chemo. I'm not sure how much of the nausea and vomiting are due to it, but this will be a good chance to see if a bit more time helps. (Also a brand-new anti-nausea med, the fifth so far. It's supposed to be really good.)

So I feel like a kid who just found out that we have a snow day. The picture is also for all my friends on the East Coast who are dealing with yet another day in the high nineties. Don't worry: we'll all be complaining about the cold before you know it.

2010-07-05T09:13:00.002-04:00

We played at Historic Deerfield as usual for the 4th, one of the band's favorite concerts, though I enjoyed it more when we used to play outdoors. Now we're always in the hall, which does make rainy concerts easier, I admit, and the acoustics aren't bad. Yesterday was beautiful, and Max, Anya, Miles, Jerry and I had a picnic after the concert -- many thanks to Anya for the great spread.
The last picture is one of my favorites. Max posed us, and Miles insisted that we both have "sleepy faces" for it.

Because you can't be gloomy 24/7

2010-06-29T12:57:00.003-04:00

Despite the many stresses in his life, Jerry managed to continue working with his usual meticulous craftsmanship.

Orchidaceous -- I promised her I wouldn't post this picture to the blog. So I lied.

Quick update

2010-06-28T14:00:00.002-04:00

Blood counts are lower, CA19-9 is higher -- up to 589. Not great, but the doctor says it's still too soon to tell if the FOLFOX is working. One more round of the chemo and we'll have a better idea.
I'm feeling a bit low these days, and not just because food either doesn't go down or doesn't stay down. People have said all along that I have a great attitude, but not right at the moment. Oh, well. This, too, shall pass.

House projects

2010-06-25T08:55:00.002-04:00

I haven't been exactly full of energy the past few days, so it's good that someone around here keeps busy. Shown in progress, but now finished, is the new red accent wall (next to Jerry's knee you can see the sage green it used to be). Quite a project, since it involved taking all the books out of the shelves, and somehow evolved into sorting them. I got rid of three boxes of anthro books that I haven't looked at in 25 years. Anyone want them? (Except I think that after they languished on Freecycle for a bit we took them to the dump.)
Anya was amused at the red wall because Jerry had objected so strenuously to her and Max painting one of the rooms in their previous house red. Jerry says it just goes to show about old dogs and new tricks.
Jerry has also replaced two bedroom windows this week. He's beginning to run out of projects. Maybe a moat or a turret?

Yesterday's meeting with the oncologist

2010-06-22T09:30:00.003-04:00

I've been having more nausea than before, and in fact, have gone back to scattering large-sized Stonyfield Yogurt containers around the house in case of need. (Lots better than those liver-colored, kidney-shaped bowls they give you in the hospital.) Also, lots of fatigue and weakness, so the big question for Dr. Nickerson was whether these symptoms were due to the change in chemo, the progression of the disease, or something else entirely (leprosy? schistosomaisis?)
His feeling was that after only two rounds of the FOLFOX he couldn't tell for sure, but that because I get the symptoms after the meds should be about out of my system it's probably the course of the disease. Not the answer we were hoping for.
In any case, we decided to keep me on the FOLFOX for another round or two and see how I respond. Best case would be that the tumor markers go down, that I feel better and stop throwing up, and that I'm not so tired. So keep your fingers crossed for that, and I'll keep you updated. Meanwhile, I'm going to go take a nap.

Peaceful getaway

2010-06-20T10:12:00.001-04:00

This is the view of the herb garden and property at Abbott's Glen http://www.abbottsglen.com/
a wonderful, peaceful getaway with a pond, sauna, interesting guests, delicious dinners, and (this weekend) beautiful weather). It was a good respite.

Except that I'm having a lot of trouble with nausea and fatigue these days, so mostly Jerry dipped in the pond while I slept. We see Dr. Nickerson tomorrow and have a lot of questions for him. I'll let you know the results afterward.

Incredible unbelievable weekend

2010-06-16T08:52:00.005-04:00

We drove down to Florence on Friday night, I thought to celebrate Max and Anya's birthdays. When we got there, Anya said that Miles had something to show me -- it turned out to be Cinda !!!!! who had sneaked in from Seattle for the weekend. I was totally surprised and delighted.
We stayed overnight there, had a wonderful, lazy, relaxed morning. (You can't see Miles snuggling under the duvet, but he was there.)

Then, after a trip to the local yarn store, which is knitters' heaven, Cinda came back to Marlborough to spend Sunday and part of Monday. Max, Anya, Miles, and Stella (to the left, below) came up for lunch Sunday.

Jerry grilled us swordfish; Cinda grilled us asparagus. (Recipes available on request.)
But the weekend continued. Monday my brother Luther and sister-in-law Miriam came up for the day, luckily overlapping Cinda, so they got to see each other. Cinda left to go back to Seattle just after they headed home.
And to top it all off on Tuesday a college roommate I hadn't seen in 45 years but re-connected with on Facebook (yay, Facebook) and her husband, on a trip to the US from Greece, came up to see us. It was funny to see how memories came floating back as we talked --nothing profound, mostly names and faces, a few anecdotes. It was an interesting experience.

And then I zonked out, and have just slept a total of eleven hours. But what a glorious weekend!

More cheers for curcumin

2010-06-11T09:01:00.005-04:00

Two friends have recently gotten in touch with me because relatives are just starting treatment for pancreatic cancer. I was happy to pass on my best thoughts for dealing with the Beast and the chemo, but I suddenly remembered that I forgot to talk again about curcumin.

Curcumin comes from turmeric and has been used in South Asia for generations as a panacea, but recent research suggests that it may be especially useful to boost the power of chemotherapy drugs. This is real research at, for example, MD Anderson Cancer Center in Texas. So far, the research hasn't gone too far -- it must be hard to get funding to study something that millions of people eat every day -- but at the very least, it shows that curcumin seems to be harmless. I've been taking it along with the chemotherapy for two years now, and so far it seems to be working! (But anectodal evidence is not worth much, as we all know.)

For the fine (upbeat, enjoyable, authoritative) blog that started me on curcumin, I recommend that you check out Margaret's Corner (living with myeloma) http://margaret.healthblogs.org/ and also Curcumin: the Indian Solid Gold http://www.curcuminresearch.org/ . There are contraindications, but in general it is worth looking into.

Another day of full-body macrame

2010-06-08T10:56:00.004-04:00

This is Jerry, trying to sort the two chemo tubes plus the wires for my non-battery laptop. Things got even more confusing after he'd left, when I had to go to the bathroom and deal with those plus the two wires attaching the IV pole to the wall. I spent more time untangling than I did peeing.

But (yay!) the new anti-nausea med seems to have worked much better than the old one did, and I feel good today. It also helped that I think I've at least partly solved the sore shoulders problem by sleeping on two pillows, one the temper-pedic and the top one nice and fluffy so I don't feel as though I'm on a sandbag.

The one new and interesting side effect is the feeling I get when any part of my body touches something cold, and I mean less than room temp. I've always had a minor form of synesthesia, a condition where people hear music as color or taste foods as sound. Mine is to experience pain as color + shape and texture, so that a toothache, for example, is always a purplish-red neon tube. Well, now when I touch something cold, I perceive something like the male side of a velcro strip, in silver. It also hurts, and I've had to put winter gloves next to the refrigerator so that I can take the milk out without flashes of silver. It's more annoying (and very interesting) than really painful, but I'm afraid that I won't get many swims in Stone Pond this summer. I usually don't make it in until August, anyway.

The Last Lecture

2010-06-07T08:35:00.003-04:00

I finally read Randy Pausch's The Last Lecture yesterday. I didn't want to read it while I was working on the major part of my own book, but now that I'm within spitting distance of finishing mine I figured I should read his, partly to be able to mention it in my query letter (why we don't compete), and partly, of course, from interest. He and Patrick Swayze (also with a book out, but it's out of the library this week) were the closest the pancreatic cancer community had to poster kids. Both Pausch and Swayze died, and after a flurry of interest, pancreatic cancer retreated from public consciousness. Unfortunately, what we need is either a continuing stream of poster kids or at least one person to last long enough to keep the disease in the public eye. I'm working on the latter.

(Big sigh of relief.) We don't compete. Pausch barely mentions the nuts and bolts of his disease and treatment, except for the obligatory how-I-found-out-and-reacted chapter. I have one of those, too, as does anyone who's had the house fall in on them. His book generally, however, is much more "what I've learned in my life and want to pass on" than "how I'm dealing with and living with this impossible situation." Yes, it is funny and inspirational, and I cried as I read his anguish that he would not live to see his children grow up -- but mostly I felt relief that it was not my book.

By the way, thanks to everyone who answered and who sent emails with suggestions for dealing with nausea. Smoothies, snacks at frequent intervals instead of real meals, and that brown rice pudding all sound like good ideas, and I'm trying them all!

Side Effects so Far

2010-06-04T08:43:00.002-04:00

You asked, didn't you?

I don't like telling about side effects or how I'm feeling unless I'm doing really well, partly because if I let you know I'm not at my best I worry that I'll sound like I'm whining. Besides, I want to be like the young woman I met in the infusion room who wore a cape her friends had made her that said Super Cancer Girl. Super Cancer Girl doesn't get side effects. They just slide off her back.

But on the other hand, I'm trying to be totally honest here. So here are the side effects I've experienced in the past two weeks, my first cycle of Folfox.

Fatigue and weakness. The fatigue comes up behind me and sandbags me. I'll be doing fine, as I was yesterday when my group -- women's group? book group? knitting group? kaffeeklatch? tea party? (that's actually what we call it, but the name's been co-opted by some political group) got together. I had a good time, and then barely made it home before I fell asleep on the couch for an hour before I could get up for some lunch. The weakness is both physical and psychological; generally I feel as though I have no reserves to dip into. Luckily the NYC visit included a lot of down time for me, which I needed, even though I hated to waste a minute on just lying there. The nurse says to exercise, rest, and pace myself (all at once? Then I can practice patting my head and rubbing my tummy at the same time.)
Nausea. It was fairly severe for the first couple of days and has been more intermittent and less problematic as time goes on. The nurse says they'll change the pre-med anti-nausea formula for next round and that I should take all my anti-nausea pills before I really need them instead of chasing after the nausea.
Loss of appetite, feeling of fullness. Food just isn't interesting, and I have to force myself to eat, even when I'm hungry. Probably because of that, my weight has gone down three pounds since I went on the Folfox. I'm still within a normal weight for my height, but people are beginning to tell me that I look tired, which I'm afraid means gaunt. Haven't checked this one with the nurse yet, but I'm afraid she's going to recommend Ensure, which, in my grandmother's words in a slightly different context, is pig slop. Please send suggestions for tasty, high-calorie, non-stomach-upsetting foods.
Tingling and numbness of the fingers (peripheral neuropathy). Not much that can be done about it.

With all of that, I ought to mention that there are some side effects that they mentioned that I don't have -- primarily, so far, I'm not oversensitive to cold. The nurse said to keep gloves near the refrigerator so I could get things out of the freezer without pain. I haven't needed to yet.
Also, no vomiting. No diarrhea or constipation. No fevers.

All of this makes me realize how easily I got off with the Gemcitabine. Looking back, it was a walk in the park. And just because I reacted this way to the first cycle of Folfox doesn't mean I necessarily will to the next. Or the next. Or the one after that. The first time is always a learning experience.

Wonderful Weekend in a Wonderful Town

2010-05-31T14:03:00.012-04:00

Sometimes things just work out perfectly. Max and Anya, as part of their birthday present to me, invited me for a weekend in NYC -- and special thanks to Denise, Anya's stepmother, for letting us stay in her apartment in Manhattan.
What can I say? The weather was perfect, the food delicious, the company -- of course -- the best. We even walked out of the apartment building and found a taxi right there at the corner, something I'd thought only happened in movies.
Miles was a delight, and had two chances to play in one of the playgrounds in Central Park, plus a trip to the Central Park zoo and FAO Schwarz. One evening Max and Anya were able to go out for a drink together while Miles and I zonked, so there was something for everyone.

Sunday in the park with Max, Anya, and Miles.

The reason Jerry was happy to stay in the sticks. You might have wondered why we left him behind. As Anya and I walked through Times Square, she said, "I sort of wish we could zap Jerry right here in the middle of all these people, just to see the look on his face, and then immediately zap him back to safety."

His comment was, "I'm glad you had a good time, but I can't imagine how you could, with all those people there."

And we got to see Wicked! And, yes, it was wicked awesome.

First FOLFOX

2010-05-25T08:41:00.003-04:00

The major problem with the plan I had for yesterday afternoon was that the first medication they gave me was an anti-nausea drug which left me so woozy that I only got a third of an inch done on the socks and barely started the novel I'd brought. However, I did beat Jerry at Scrabble, wooziness notwithstanding. (He never, ever gives me a break because of my condition; I always take advantage of the fact that he's concerned, anxious, worried about me. It's the secret of my occasional success.)

He went out for a walk in our beautiful almost-summer weather while I got pumped full of the various kinds of stuff. Then, eventually, the nurse brought over the fanny pack and pump and showed us how to use them. No-brainer, except in case of leakage. The stuff is poisonous, so most of the concern there is to make sure it doesn't get all over everything. Or cloggage, in which case you call either of the two numbers on the info sheet, though the nurse warned, "Just don't call the doctors. They don't know anything about this stuff." Or (we are, after all, in the 21st century), terrorist attack. I'm not sure why they stuck that into the packet, but it did pad it out nicely.

We got home and I immediately started in on more anti-nausea meds. The basic rule is to take the meds just before you need them, not after.

The only problems came after we went to bed. I put the pack, nicknamed La Bomba, on the headboard and thanks to my practice over the past few nights managed not to get tangled in the 45" of tubing. But I felt a lot of nausea, pain from my rotator cuffs, and to top it off, a bad case of the Periodic Limb Movement/Restless Legs Syndrome I've had a lot lately. So there I was, twitching, sore, and holding the Stoneyfield yogurt container lovingly to my breast, just in case. I felt rather as though I were inhabited by a thunderstorm. Jerry, of course, was awake and sympathetic for the whole thing, and as usual felt helpless, which upsets him even more.

I finally got up and took a whole bunch of pills, hoping that they wouldn't work against each other. Go figure -- I slept better than I have for weeks.

Slight digression into knitting (and about time, too)

2010-05-24T08:16:00.003-04:00

It isn't really a digression, though, because as soon as I found out that I was going to be spending about four hours every other week in the infusion room my first thought was, "Now maybe I'll finish the damned socks."

I love making socks -- until I get to the cuffs, at which point I get either frustrated because the counts won't come out right for a pattern, or bored because I gave up on the pattern and I'm doing endless rounds of ribbing. I always do toe-up socks because I can't stand the idea of having to get through the cuffs before I can do the fun part. (My grandma always ate everything on her plate before she'd allow herself the fun of eating dessert. I do not take after her.) But with that much time hooked up to the IV stand I can bite the bullet, haul myself up by my bootstraps, put my shoulder to the wheel, and finish the damned socks.

The shawl is another matter. It's from gorgeous hand-dyed boucle, and it's wonderfully soft and easy to work with. The only problem with it is that I'm going point up, so each row is longer than the one before. On the other hand, I'm doing it completely in garter stitch so as not to get in the way of the subtleties of the colors, so I just chug along on it mindlessly.

What next? It will partly depend on the side effects of the new chemo (chemo brain leads to some interesting pattern variations). But the possibilities are endless. For the next two days, while I wear the portable pump and delivery system I gather I'm likely to spend most of my time asleep. Then I'll feel better and, hopefully, more energetic.

For those of you who remember the pop music of the 40's (is anyone left who does?) I woke up this morning singing "So you put the fanny pack here, and the chemo goes round and round, round and round, oh-ho-oh, and it comes out here."

I made it!

2010-05-21T09:22:00.003-04:00

Sixty-seven years old today, and so glad.

My Top of the Hill Friends gave me a party, as you can see, Hawaiian-themed. I wish I had a picture of the cake, with palm trees, blue waves, and a surfer, but there's none left. Today includes a massage and dinner at Nicola's, a good restaurant with incredible moules. And Sunday a weekend get-together with most of the family (we miss you, Cinda and Rob).

One of the things I do is think: if I didn't have cancer, what would I want to be doing now?

Just this.

Moderate encouragement

2010-05-18T11:16:00.004-04:00

First of all, don't ever get in a car with Jerry and a GPS system. He takes every contradiction to the directions he had in mind as a personal affront and ends up swearing at the nice lady in the machine who clearly was taking his comments personally herself and said "Recalibrating" increasingly gruffly as we drove around and around Boston. But we got to Dana Farber, and finding it was really the most traumatic part of the day.

Here is what Drs. Hata and Wolpin basically said:

It is extremely unusual for someone to do so well so long on just Gemcitabine. Eventually the cancer gets used to the Gemcitabine and it no longer works; this is what has happened to me. So then it's time to move on.
Dr. Nickerson had recommended a form of chemotherapy called 5-FU. Dr. Wolpin strongly suggests a chemo cocktail of 5-FU, leucovorin and oxaliplatin, called FOLFOX. We'll explore these two options further with Dr. Nickerson day after tomorrow. There are side effects, and at least FOLFOX involves a 48-hour continuous delivery system, which means I'd wear a fanny pack containing the drugs and a pump. A tube would take the chemo up through my port. My first question, of course, was whether I could play trombone while wearing the equipment. I don't think anyone had ever asked them that before, because the answer came down to "do whatever you can, but don't do anything that involves repetitious motions while you're wearing it." I'm not thrilled at the thought of trying to carry on daily activities hooked up to the system, not just trying to play trombone, but also what about yoga? What about sleeping? I'm still trying to get used to new sleeping patterns to help the rotator cuff tendonitis. But obviously I'll do what I need to do.
Dr. Wolpin said that he had a few patients who do this well on Gemcitabine, and when it's necessary to change the medication, these are the patients who also seem to do better than usual with the new ones, which is another hopeful sign for my ability to tolerate and last longer with the 5-FU or FOLFOX (which Jerry keeps misunderstanding as "firefox", "foxwood", or "firewood"--don't even ask what 5FU brings to mind).
We asked about some of the other options, and the general impression that I got was that they're still being tested and might be a third option for later on, when either the new chemo stops working or the side effects get too bad.
He was polite about curcumin but snickered at the thought of celery juice (not that I'd try it after my cabbage juice experiment). He said to try whatever makes me feel better, which is what I've been doing anyhow.
Unfortunately, no one in the examining room seemed ready to wave a magic wand and make the whole situation go away.

We left with less dread than we had come in with. The bottom line is that we should savor each day and continue to live as healthy and happy a life as we can, no matter what gets thrown at us.

Random things I love these days

2010-05-13T09:38:00.022-04:00

Mothers' Day flowers from Cinda.

It's the beerbutt chicken season again.

Grandma and Miles make rosemary jelly together.

A new knitting project.

Goslings on our pond, guarded by their parents.

Life is good. (Except that I can't seem to get the captions next to the pictures.)

The good thing about electronics is that we won't waste so much paper

2010-05-11T08:45:00.003-04:00

That's three inches of paperwork, plus the disk that has my latest CAT scan on it. Dartmouth-Hitchcock has (presumably) sent all of this on to Dana Farber, but they suggested that I take copies along. I hope that the doctor there gets them and has a chance to read them before we arrive, because it's taken me an hour and I'm only about half way through.

Reading my own medical records is the kind of fascinating/boring experience I haven't had since grad school, when I went through obscure articles in learned journals hoping to find that one bit of esoterica which would make my paper look meaningful.

I find that I am a pleasant 65- or 66-year-old female, alert and cooperative, apparently capable of understanding what the doctors say ("pt was advised of and understood risks of the procedure"). Everything is tracked and recorded: my blood pressure, blood counts, subjective pain, weight (ha! I caught them. One week it was suddenly 148), and of course, the frequency, doses, and reactions to the chemo. I am impressed. Dartmouth-Hitchcock does not lose track.

D-H also uses electronic record-keeping, so they made two copies of the whole thing on paper to get to Dana Farber. Plus of course the disk. I wonder, do I play that on the computer or the DVD player? I'd hate to use the wrong one and maybe erase the whole thing, but I would like to show off to Jerry what my insides really look like. I peeked during the CAT scan, so I can at least find the spine and the lump. That one's easy, because it has the needle sticking out of it.

I read on the pancreatic cancer forums about others dealing with this who also deal with incompetent, rude, and lazy hospitals and staff. I am thankful for the wonderful people at D-H, large amounts of paper and all.

Next steps

2010-05-07T09:53:00.002-04:00

Thanks to the help of Mean Mama, who was able to help expedite matters, I have an appointment on May 17th at Dana Farber with one of their best oncologists (and that means very, very good). The week will give my body time to flush the Gemcitabine out of my system and build up all my blood counts, not to mention finishing the healing of the rotator cuffs. (They're doing much better, by the way. I've been diligent or maybe even obsessive about doing the exercises and balancing bags of frozen peas on my shoulders as needed, and they feel so good that it's one less thing to worry about.)

And thanks to Arctic Mermaid's generosity in sharing some of her yarn stash, I have projects galore to keep me busy while I wait.

And thanks to all of you who've sent calls and messages of support. I can't imagine what it would be like to go through all this without you.

Things don't always work out the way you want them to.

2010-05-05T14:50:00.003-04:00

We met with the oncologist this morning. The lump in the abdomen is definitely malignant, and it's pancreatic cancer. (There was some question about this, since it might actually have been possible for 11-year-old breast cancer cells to show up again, or it could have been something else entirely. A doctor friend told me about a patient of his who had three different kinds of cancer at once. And I think I have problems.) In any case, the good news is that the lungs and liver are clear and the pancreas itself doesn't seem to have changed much in the two years since the surgery.

However, the new tumor means that the Gemcitabine has stopped working, which it always eventually does, and the question becomes what do we do next? Dr. Nickerson suggests one of the standard forms of chemo, and while I'm not against them, I am interested in some of the newer combinations that have come out in the past few years. Most of them are added to Gemcitabine; Dr. Nickerson's feeling is that if the Gemcitabine has stopped working, why add it to something else? A good question.

We went in with seven pages, single-spaced, of information (I always do my homework), which either impressed or overwhelmed him. I got most of it from PanCan, the Pancreatic Action Network, whose volunteer was extremely competent and helpful.

At this point it becomes a balancing act of quality and quantity of life, something I am simply not ready to deal with right now, mostly because I still feel generally good. So, what will keep me in this state as long as possible?

What we decided to do was to go for a second opinion, not because we don't trust the doctor but simply to get as much information as we can get. Next step: the trek to Dana-Farber Cancer Institute in Boston, after which we'll have, if not The Answer, at least some answers, or possibly a whole new bunch of questions.

Last evening, when a friend asked how I was doing, I said, "I got some bad news," and he shook his head and said, "No. We all got some bad news." His -- and your -- support means more to me than I can say.

Interim update

2010-04-30T08:25:00.007-04:00

Tuesday has been the only day this week that I didn't go to the med center. If I start the car at the top of Pleasant St. and fall asleep, I'm sure that fifteen minutes later I can wake up to find myself heading into the Dartmouth-Hitchcock parking lot. It's automatic.

Anyhow, Wednesday and Thursday were the big days, both involving lots of needle sticks. On Wednesday I was supposed to get blood drawn to prepare for Thursday's biopsy, and they couldn't take it from the port, which meant needles in the arm. My veins don't like being punched, so they slither away and develop hard edges so the needle can't penetrate. A nurse can only try twice before handing the job over to someone else.

It took six attempts, punctuated (so to speak) by my visit to Orthopedics, where they gave me a cortisone shot for my shoulder. Back to Oncology, where they finally got blood from me.

Visit in the afternoon to the GI doctor, who fortunately was unarmed, and who basically agreed with the oncologist that the pain I've felt under my ribs doesn't seem to be anything to be concerned about. Maybe a pulled muscle, maybe the cancer or scar tissue rubbing against a nerve, but definitely not anything showing up on the CAT scan.

Thursday was the biopsy. I went in and out of the CAT scanner while they figured out just where to take the samples from. Luckily the lump is right on the abdominal wall, very easy to get at. The person taking the samples said, "Now, don't worry. This needle is no bigger than the ones we use to take blood," and couldn't understand why I almost leaped off the gurney to run screaming through the halls.

However, the procedure itself was fairly easy (love that Lidocaine, even though it involved several injections).

Initial results: the pathologist couldn't find any evidence of cancer in the first draw. The second, according to the person taking the samples, showed pretty conclusively that the lump isn't a hemotoma, because they're sort of squishy, and this was so hard he said he had trouble getting the needle in (so that's what I was feeling) and that it seemed more like scar tissue than anything else. I find that very hopeful, though I'm not sure how I'd get a scar in my abdomen.

We wait for final results, next week. As I count back, I figure that this week I've had at least fifteen needles shoved into me. No wonder I have no interest in getting a tattoo, and even acupuncture doesn't sound attractive.

One other note: Jerry was with me for the first of the blood draws, and when the nurse said, "I have to go get the pink sticker," (which goes on the tube of blood to tell the lab just what to look for), he got a look of sheer horror on his face and asked me, "Did she say she was going to get the pig sticker?" A bit of hearing loss can add real interest to life.

Good news, not so good news, and more waiting around

2010-04-27T09:51:00.002-04:00

We met with the oncologist yesterday and got the results of the CAT scan and the latest CA19-9 figures. The good news is that the pancreas seems about the same and there's no sign of cancer in the liver or lower lungs -- and this is very good news. Also there doesn't seem to be any sign of cancer under my ribs, where I've been aching. The doctor isn't sure what the pain is, but I'll mention it to the GI doctor at my appointment tomorrow, and maybe he'll have an idea about it.

The not so good news is that I have a small lump in my abdomen. I knew that, actually, because I could feel it, but I didn't tell Jerry partly because I didn't want to worry him unnecessarily and partly because of magical thinking that maybe if I didn't say anything it would go away. (Magical thinking doesn't work very well.) I'm getting the lump biopsied on Thursday morning. It could be a hematoma or a cyst; apparently random metastases in the abdomen are unusual, so we're trying very hard not to jump to any conclusions.

The other not so good news is that the CA19-9 is up again, to 187 from 156 last time. Again, a reminder to myself as much as to everyone else that this is a minor rise. I just don't like the direction.

So where does this leave me emotionally? I've actually been more bothered by the rotator cuff tendonitis on a day-to-day basis lately than by the cancer. While the cancer lurks in the background, the rotator cuffs hurt. Now suddenly I have to change my focus back. I'm back on the roller coaster, and I've always hated roller coasters. Generally speaking, though, I know that I'm in the best possible hands and have the best possible support, and this helps flatten out the emotional dives. Jerry says, "Whatever happens, we'll deal with it," and I immediately feel better.

Tomorrow I might as well just plan on spending the day at the hospital:
8:30 blood draw for the biopsy
9:00 appointment with the orthopedic physician's assistant to check progress on the rotator cuffs
1:15 appointment with the GI doctor to discuss the ulcer and the pain under the ribs
2:00 physical therapy

And then on Thursday morning I have the biopsy, but don't meet with Dr. Nickerson until next Wednesday. For reasons I don't quite understand having to do with chemo messing up the necessary bloodwork for the biopsy, I didn't have a treatment yesterday, which left me feeling like a kid on a snow day. Wow! a day off.

Keep sending good thoughts, and I'll keep you posted.

CAT scan

2010-04-23T11:50:00.002-04:00

Just got back from the every-six-months CAT scan. This one has made me a bit more nervous than usual, because I've developed a few things that can't quite be called symptoms. They're more like blips on the radar, one by one not meaning much, but taken together perhaps pointing in a direction I don't want to look.

There's the weight loss, except that the weight seems to have stabilized again. Varying appetite, which seems to have little to do with how hungry I am.

There's the crushing/crashing fatigue that hits every day so that I need to take a nap. But again, I'm not the only one who takes what my grandma used to call a loll-down in the afternoon.

There's the ache under my ribs on the right side that is definitely more noticeable than it was a few months ago.

There's the CA19-9 that seems stuck around 150, though Dr. Nickerson points out that it hasn't changed much, and it's a major rise that is indicative of problems.

I wasn't even going to write anything until after Monday, when we see the doctor, but I'm trying to be completely honest here, and that includes worries, even when (I hope, I hope) unfounded.

2010-04-18T08:58:00.003-04:00

A few days ago during chemo, the man sitting next to me started muttering to himself, so I said, "Bad day?"
"They all are. I don't know why this should take so long. I've been sitting here waiting for them to even start for half an hour."
"Well, they have to check your blood and make up the infusion and some times it takes a while."
He paid no attention, just went on, "Three days a week -- three -- I have to have dialysis and now I have to have this, that's four days gone every week."
"That's rough. What do you do to pass the time?"
"Nothing.... I watch T.V. Nothing."

I wondered, almost didn't ask, then figured why not? And asked, "Is it worth it?"
A pause, and then he said, "No." Another pause, and then he said, "I'm only fifty-five years old. I could live another thirty years. Thirty years like this, dialysis and chemo every week. No, it isn't worth it."

My first thought was "I'll trade you, right across the board. Your thirty years, even with dialysis and chemo for my uncertain shorter time."

But then I thought, "No. Not if it meant having to live in your skin," so I just said, "Hang in there. You never know what they'll discover soon."

Praise and complaint

2010-04-15T08:51:00.002-04:00

I feel fortunate to be surrounded by competent people. The latest is the PT, who prodded my shoulder, praised my posture, and gave me generally reasonable recommendations for dealing with my rotator cuff tendonitis -- ice, exercises, and yes, I can continue to play trombone through this as long as I stick to the top three positions, which is going to be interesting.
Even after a day of following her recommendations, I feel better.

Except.

Except for the last suggestion. For most of my life I've been most comfortable sleeping on my right side, shoulder curled forward under me, and because of the super-flexible tendons that got me into this in the first place, that's way forward. And now it's a no-no. I should sleep with my shoulder tucked back, or sleep on my back, or sleep on my other side.

When you've slept with someone for over 40 years, there's a kind of pas de deux that takes place every night. You start spooned one way, then together turn onto the other side, then slide apart and sleep on your backs, then curl up slightly differently, then repeat. The sequence is unvarying and probably delicately timed. Until now, it's only been interrupted when the cat decides to sleep between us, stretched out crosswise.

But last night I either tried to curl my shoulder back (so where does the elbow go?), sleep on my back (and really snore), or try for new positions that wouldn't wake Jerry up (unsuccessfully). It doesn't seem fair that Jerry has to bear the brunt of this as I toss and kick and even try to stretch out crosswise, all without success.

Well, tonight is another night. Meanwhile, even the problems sleeping haven't stopped my jubilation at the visit to the PT. She said that as long as I worked at this she couldn't see any reason the rotator cuff problem shouldn't be fixed. It's such a joy to hear that something physical I have can actually be fixed.

Nature's first green is gold....

2010-04-13T08:42:00.009-04:00

I WANDERED lonely as a cloud
That floats on high o'er vales and hills,
When all at once I saw a crowd,
A host, of golden daffodils;
Beside the lake, beneath the trees,
Fluttering and dancing in the breeze.

I love spring. Suddenly there are incredibly bright splotches of yellow all over the place, filling me with joy and hope.
However, I can't help thinking that Wordsworth was really lucky that his bright splotches of color were flowers rather than shrubs, or instead of A host of golden daffodils he'd have had to make do with Forsooth, forsythia!

Coffee. Sigh.

2010-04-09T09:35:00.002-04:00

Well, croissants, too, actually, but on the cruise I had croissants for breakfast every morning. It's the coffee I miss, partly because it's such a big part of my self-image.

As a teenager, my fights with my mother were always ended with my getting her a cup of coffee. While we drank it we cooled down.

I remember drinking tepid (tap water) instant coffee in my dorm room at AUB, and the wonderful Turkish coffee my friend Mahmoud made, letting the mixture boil up to the edge of the pot three times, a feat made even more impressive by Mahmoud's blindness. He taught me to listen to the sound the coffee made as it climbed the pot.

Over the years, coffee was the accompaniment to conversations, to writing, to just sitting and enjoying a moment of relaxation.

I remember the smell of the coffee-roasters near the bus stop in San Jose, Costa Rica. I'd bring home a kilo of freshly-roasted coffee and one of freshly-roasted peanuts, and when the bus went past the cookie factory I'd go into sensory overload from the mingled aromas.

Then there was the high school English teacher in whose room I camped while teaching ESL. She always had a coffee pot going. I remember that as one of the most civilized years of teaching I spent at Keene High School.

I'm trying a different ulcer med now. Wish me luck. I want my coffee back.

Losing weight

2010-04-08T08:32:00.003-04:00

I noticed today that I've lost four pounds in the past month, which for most people under most circumstances would be cause for celebration, or at least an extra piece of cheesecake. It's no proof of self discipline, though, especially since I was on a cruise for two of those weeks, eating whatever and whenever I wanted. (And by the way, this is not to scare anyone. I'm still at what the charts say is normal weight.)

It's just one of those things that cancer can do. There are several factors, only the first of which seems to fit my situation:

The appetite isn't the same. I've noticed that while I still get hungry and enjoy eating, I just don't ever feel starved or voracious. I ate desserts twice a day on the cruise, but almost never felt like finishing one.
The digestive system isn't as efficient. In extreme cases, food goes right through without any nutrients actually getting into the body.
The cancer "grabs" the nutrients before the rest of the body can get to them. This is the basis for some people with cancer going on low-protein or low-sugar diets -- a bad idea, since it's actually cheating the rest of the body from getting any value it might from the food.
Foods may taste strange or disgusting, or cause nausea or pain. The only food that bothers me is coffee, damn it. I'd be so happy to give up liver or turnips.

Troubles with eating can cause problems in the family. Loved ones watch the person with cancer refuse food or leave food on the plate and get terribly frustrated. Yesterday someone on the Johns Hopkins pancreatic cancer forum posted something that said in part: We try to get him to eat all the time but he refuses much of the time.... I find myself getting angry at him. I know it is hard for him and I have no clue but it is just food, it will help you live! Just drink the ensure and chew the food. I dont care what it tastes like! He has to see it from our perspective also, we are watching our loved one wither away!!! I hate that I am angry with him but I am scared that we wont lose him to the disease we will lose him to a side effect.

There were over 70 answers to this post. The frustration is real, and shared. People with pancreatic cancer described how hard it is to force food down and how their caregivers almost come to seem threatening and hostile. The plate becomes a battlefield.

The suggestions of caregivers ranged from "Let them eat whatever tastes good.... Lots of little meals are better than a big plate full of food.... Have you ever known anyone on pot who didn't get the munchies?...." and most importantly, "Don't let something like this come between you. Make whatever meals are possible a time of love and joy, not a power struggle."

And that last sounds like good advice for all of us.

Summing up

2010-04-02T08:43:00.002-04:00

On the way back, we had a couple of days of cool, windy weather, but the sun still felt good.

So how does a vacation from cancer feel? Like a vacation from cancer. It was wonderful to leave it behind for two weeks. I missed a chemo session and (I hope) built up my strength and blood counts. I continued to take curcumin and some of the other meds, but as I looked around the dining room I saw quite a few other people opening pillboxes, so I didn't feel strange.

We didn't talk about my condition, except with friends from other cruises who already knew about it and with a couple who disclosed that she has multiple myeloma. After one conversation trading information and making in-group jokes, we never mentioned it again with them. It was almost like being normal.

Almost, but not quite. I realized that my energy levels aren't what they used to be. I needed as many naps as a two-year-old, and got cranky if I didn't get them. And I gather from Luther and Miriam, who took the previous leg of the cruise, leaving the ship just before we got on, that there was a good band and lots of dancing at night. But we missed it all, Jerry because he doesn't usually enjoy dancing anyhow, and me because I crashed early.

It was refreshing. It was wonderful. It was too short.

Hilo, Honolulu, Maui, Kona, Kauai.....

2010-03-31T16:01:00.018-04:00

On Hilo we went to the Botanical Garden, where we looked at orchids until the downpour started. We'd have been completely soaked instead of slightly soaked if a fellow cruiser hadn't offered us her poncho. She'd been wise enough to take one of the free umbrellas at the start of the walk, but Jerry had said it wasn't going to rain and I'd said that even if it did we weren't made of sugar, were we?
It was the kind of warm rain that makes me miss the tropics.

The next day was the big island, where we didn't go on an excursion. Instead we found ourselves at the Honolulu Zoo, along with dozens of groups of cute, well-behaved kids in matching tee shirts, all on field trips. They were as much fun to watch as the animals.
For the benefit of crossword puzzle addicts, the unimpressive bird is a nene, Hawaiian goose.
And there is Jerry on the beach at Waikiki (note: it's a good idea to remember to bring bathing suits to a beach if you plan on swimming).

And on to Maui, where we met up with Rob's folks, Steve and Jack, and had a wonderful time with them. After all of the people we met on the cruise it was especially good to spend some time with family.

We'd signed up for an excursion in a glass-bottomed boat in Kona, with a promise of whales and dolphins (and lunch). It wasn't until we were out in the boat that they admitted that the Big Tsunami of 2010 had stirred up the bottom enough that there weren't many fish to be seen. Or any, actually. Or whales (one tail flip at a distance). Or dolphins. And the lunch was mediocre. But that was literally the only disappointment of the trip, and as you can see, Jerry knows just what will make me feel better.

The final day was at Kauai, where we did remember our bathing suits and spent a great morning at the beach, getting tumbled around by the waves even if we didn't quite feel brave (or rich) enough to try surfing.

It's a rough life, but someone's got to do it.

Sailing Away to Hawaii (first few days)

2010-03-30T14:34:00.006-04:00

The Celebrity Constellation

(Though it is somewhat larger than it appears in the picture)

As we boarded. One of the larger portholes behind us might be our room.

Within two hours of our boarding, Jerry found a piano. Within a couple of days he had a following who applauded, bought him a couple of drinks, suggested songs, and occasionally talked through his set (you can't have everything).

Listening to Jerry play was one of the high points of the trip for me.

Eating was another -- for both of us.

Next post, assuming I can get pictures from all three cameras coordinated, will be of the islands.

Just to sum up, though, it was a wonderful two weeks. We enjoyed it thoroughly.

And now for something completely different....

2010-03-10T08:22:00.002-05:00

Silence. I'll be back with you in a couple of weeks. Enjoy your life, as I plan to enjoy mine.

10 Signs that spring is actually on its way -- NH version

2010-03-06T09:15:00.002-05:00

Radio stations are reminding us to take down our bird feeders because it's warm enough for the bears to wake up, and they're hungry.
We're also reminded to get those bob houses off the lakes now, before the ice melts and they (and maybe the cars pulling them) sink down into the watery depths.
The other morning, I caught a faint aroma of skunk around our barn.
You can tell just which drivers ahead of you know the roads by whether they swerve to avoid potholes or bounce right into them.
Maple trees are attached to each other with blue plastic tubing.
When the snow falls it doesn't last as long as before, and it's much heavier to shovel.
Teachers can tell you that there are 66 more days of school -- but who's counting?
A few early bird Florida license plates have already been spotted.
The cat meows to get out on the porch, then realizes that it's still too cold and glares at me accusingly.
Jerry and I leave on vacation this coming week.

Joining the club

2010-03-04T08:13:00.008-05:00

During the past couple of weeks I've heard of two people newly diagnosed with pancreatic cancer. My heart goes out to them and their families. I know what they're going through. First there's the almost literal feeling of having been punched in the gut. Then perhaps a little relief -- after all, people don't die of cancer much any more, do they? .... And then, the nasty statistics. How can anyone stay sane after reading them? Some people feel numb. Others go straight into anger. Others simply get depressed and give up.

Oh, yes, I remember. And there are times when I react to the eventual realities of my situation and mourn the years and experiences I will miss. Most of the time, though, I'm too busy living the life I have, made easier by all of the support and love that surrounds me.

Here are three sites which have helped me over the past two years. First is a famous essay by
Stephen J. Gould, the evolutionary biologist who was diagnosed with a horrible form of cancer at an early age. It puts some of those nasty statistics into a better context for us:
http://download.srv.cs.cmu.edu/~pausch/news/medianNotMessage.html

Next are the two sites for PanCan, the Pancreatic Action Network. The first is the general site where you can find various kinds of help, including a telephone number where you can reach people who can answer any question you might have:
http://www.pancan.org/

The second is the forum in which people with pancreatic cancer and their caregivers share thoughts, ideas, rants, questions, and their own answers. Sometimes the posts are poignant, sometimes annoying. If nothing else, they remind me that we may all have the same kind of disease, but we remain ourselves, at our best and worst.
http://pathology.jhu.edu/Pancreas_chat/

Finally, while I'm not an expert I'm happy to share my own journey. Email me or call me. We survive best when we support each other.

Why some of us love winter more than others of us

2010-02-28T09:36:00.003-05:00

This is Jerry, heading into the sauna as the snow falls around us. Perfect weather for that sort of thing. What I didn't get in the picture is his bare feet. What with the deer and squirrels, as well as Jerry, leaving prints, the snow looks rather as though St. Francis had been roaming our back yard.

And here he is, in the sauna. Please note the great things you can do with cropping a picture.

Finally, the piece de resistance: a chance to roll in the fresh snow. You don't get the actual picture of Jerry making snow angels, but that's just because I'm a wimp. I neither stay in the sauna as long (or as hot) as he does, nor go anywhere near the snow afterwards. You'll have to take my word about the angels.

Catching up on health stuff

2010-02-26T08:29:00.003-05:00

I've noticed that recently the blog has had a lot of non-pancreatic cancer health things, and I'm not sure whether I feel annoyed (hey, I've got cancer, I don't need all the rest of it)or relieved (hey, I'm just like every other aging person, so everything must really be okay).

But I thought I'd bring you up to date and then next time we can talk about something more interesting.

Aches and pains: a combination of Tylenol, muscle relaxant, saunas, and Jerry's fantastic massages works wonderfully.

Ulcer: Either the new meds or the cabbage juice is working well. I'm not going to stick with the cabbage juice much longer, though. It doesn't improve with time. Besides, I think I've discovered a new weight-loss system. Remember the old cabbage soup diet? Well, a glass of cabbage juice before meals kills the appetite. I've lost two pounds in the past week. Not a good idea, though I'm still at a normal weight.

High blood pressure: have I mentioned that one? It seems to be tending upward, and though none of the doctors seems concerned, the oncology nurses have taken a great interest in it and sent me to a physician's assistant, who told me to get a blood pressure cuff and take my blood pressure for a few days to see if this was all white coat syndrome.
I bought the cheapest one, with a bulb to pump up and a dial showing the numbers. When I got it home, we tried it, following the instructions exactly -- or maybe not exactly, since my blood pressure seems to be 180/0.

We've now borrowed a state of the art cuff from friends, and the physician's assistant has a script ready for me for yet more meds, if I do, indeed, have high blood pressure. Or any.

The only pc news is good -- my CA19-9 has gone down this month from 147 to 131. It probably isn't significant, but it's definitely a cause for celebration.

Still going strong

2010-02-21T09:10:00.002-05:00

This is the second anniversary of my diagnosis. Two years ago I never imagined that I would still be here and with generally good health and energy.

There isn't a day that goes by that I am not profoundly grateful for the gift of time I have been given.

Go -- have a drink, have some chocolate, hug the people you love. For that matter, hug a stranger. Try something new (a mixture of cabbage juice and mango juice is a possibility but I'm not sure I recommend it).

Enjoy.

The latest taste sensation

2010-02-20T11:21:00.002-05:00

In my never-ending search for new and unusual recipes, I've found one I never would have tried if a google search hadn't persuaded me that this is the wonderful, new, almost-guaranteed ulcer cure.

Cabbage juice.

Recipe: Juice or Vita-mix cabbage with half as much water. Drink slowly. Believe me, this one you don't want to chug. Supposedly the ulcer disappears in half the time it takes the medicines to work. (So if I'm doing both, does that mean the ulcer will be gone in 3/4 the time? Or is my math weird?)

Jerry bought several kinds of juice to mix in instead of water and I'm looking forward to trying them. Bless him -- because the only side effect so far is that the whole world tastes like cole slaw.

Ulcerous update

2010-02-17T10:16:00.003-05:00

We went in yesterday morning at 9:30 for the UES (upper endoscopy) and were out by 11:15, with me feeling well enough to eat some of Panera's baked potato soup. The prep, recovery, and paperwork took up most of the time between.

I was semi-knocked out for the procedure. You don't want to be just semi-knocked out if there's any chance the doctor might say "Ooops" unexpectedly, but I have confidence in Dr. Krishna. As a matter of fact, he and the anesthesiologist spent the few minutes of the procedure talking about Indian food. I seem to remember the anesthesiologist asking for a curry recipe for a cauliflower he just happened to have on hand. Or I could have been more out of it than I thought.

As always, they sent a tiny cameraman, lights person, best boy and grip down my throat to make the film. Result? The previous ulcer has healed (where the black outline is)but I have a new one (I think it's the reddish area next to the outline).

I'm now on different meds and we're waiting for the biopsy results, which should come out in a couple of days.

I don't want to complain, but did I need this?

2010-02-12T08:24:00.002-05:00

For the past few weeks I've had increasing stomach aches and queasiness -- never enough to really worry about, but enough to annoy me and keep me popping Tums and Tylenol. On the strong urging of one of the oncology nurses and Jerry (neither of whom ever goes in to see a doctor unless there's a severed limb or blood spurting all over) I went in to see the GI doctor, Dr. Krishna, yesterday. He always remembers me as the person who takes curcumin and reminds me that his mother has always said that curcumin or turmeric will cure anything.
He thinks that the ulcer (almost certainly unconnected with the cancer) is acting up again, so next Tuesday I'll have another UES (upper endoscopy) in which he'll send his little camera down my gullet to check the stomach and then, presumably, change the prescription for the acid reducers I'm already taking.
Again, probably not connected to the cancer, definitely not H. pylori, possibly related to stress. In other words,"we don't really know why you might have this, and diet won't affect it (but the curcumin won't hurt.)"

But I don't do that, either

2010-02-09T08:46:00.002-05:00

http://www.webmd.com/cancer/pancreatic-cancer/news/20100208/pancreatic-cancer-linked-sodas

I'm getting tired of all the things that might cause pancreatic cancer that have nothing to do with me:

obesity
heavy smoking
diabetes
being male
being African-American or Asian
being a meat-eater
not eating veggies
family members with it
and now, drinking sodas

When are they going to get around to something that might actually explain my case?
Don't mind me. It's chemofunk day, third round of the cycle, so I'm feeling achy and sorry for myself. Tomorrow will be better.

A mundane cold is a nice thing to have, if you stop to think about it.

2010-02-05T11:01:00.003-05:00

With all of the ups and downs of chronic cancer (I always wonder, am I feeling low because of the chemo or something worse?) it's actually rather pleasant to just have a normal mundane cold.

Besides, with a cold there's always something you can do for it. As one "cure" after another comes into fashion, Jerry and I tend to just add them on, with the result that today, besides my usual curcumin, vitamins, and other meds I took:

vitamin C
zinc
grapefruit seed oil (yuck)
elderberry extract (yum)
we're out of echinacea, and besides, maybe I've stopped believing in that one

I used to ask my students what they took for colds. The oddest was a garlic-and-honey tea suggested by a Brazilian student. That's one I think I'll skip. A Japanese student told me that she always had the special garlic soup her grandmother made, and when I pointed out that she could get all the ingredients here, she said, "Yes, I get ingredients, but not grandmother."

Andrea Chessman, in The Roasted Vegetable, suggests a garlic soup, though she doesn't promise it will cure a cold (maybe because it features ten mothers instead of one grandmother). Here's my interpretation:

Ten Mothers (or one grandmother's) Garlic Soup

Cut the top, woody part off 2 heads (not cloves, heads) of garlic, oil them, and wrap them in foil. Roast at 425 for about 45 minutes.
Squeeze the soft pulp into a saucepan, add 5 cups broth, and simmer for a few minutes.
Cut the stems off 4 cups spinach leaves, chop the leaves coarsely, add to the broth, and simmer for a few minutes (but not too long).
Serve hot.

Not that we're pushing the grandchild in any direction

2010-02-03T10:54:00.002-05:00

Jerry made the marimba from scrap pieces of wood for a birthday present for Miles. It's an octave and a half, and the reason the keys aren't graduated evenly in length is that they're made of different kinds of wood with different resonating frequencies.
The things you learn.
The rock star birthday party was a great success. If we had harnessed the energy we could have closed down the Vermont Yankee nuclear power plant for several hours.
At the same time, it was a very happy party. As my mother used to say, "No one cried, no one whined, no one wet." A good time was had by all.

If it's Monday it must be chemo

2010-02-01T09:43:00.002-05:00

I think one of the hardest things to get used to in all this is the schizophrenic split between regular life and cancer life. For example, we had a busy weekend, with dinner out with friends on Friday, Miles's fifth birthday party on Saturday, Yoga Day in Keene on Sunday (yoga class, massage, henna tattoo, good friends), and dinner for Jerry's woodwind quintet in the evening, the kind of wonderful but not unusual things we have always done on weekends (and I never described the great trip to Boston last weekend to visit with Luther and Miriam, brother and sister-in-law, and go to a Luciana Souza concert). But this afternoon Jerry and I will pack up knitting and the Scrabble game and go in for chemo, and we plan for my not doing much tomorrow and not feeling really up to par until Wednesday evening.

Which is normal life?

Why should I be the only one grossed out?

2010-01-29T11:08:00.003-05:00

I'm working on a chapter for my book in which I (finally) get around to describing the pancreas, and the best short description I found is the following:

The pancreas is the rather large, loosely made, lobulated organ that lies in the mesentery. or supporting membrane of the small intestine. It secretes pancreatine into the intestine, which helps to digest fat. The pancreas also contains the "islands" of cells that produce the hormone insulin. It is good to eat, but is considerably less delicate in flavor than sweetbreads....

Okay, it isn't out of a medical textbook. It's from Calvin Schwabe's Unmentionable Cuisine (University Press of Virginia, 1979), describing beef pancreas. He goes on to offer the following recipe (slightly modified)

Heat 1/2 c of fat until smoking, brown a cut-up oxtail and two pairs of veal sweetbreads. Reduce the heat and cook gently for about 45 minutes. Add some cut-up breast of veal and a generous quantity of sliced onions. Cook another half hour. Add a cut-up beef kidney, 1 1/2 c strong beer and a bouquet garni. Simmer for 30 minutes, add a beef pancreas cut in pieces and another bottle of strong beer and some mushrooms. Simmer until the pancreas is done. Thicken if desired.

Do tell me if you try this recipe. I plan to skip everything except the beer.

Seeing another doctor

2010-01-27T10:24:00.003-05:00

My shoulder has been bothering me for a few weeks (arthritis,usually happens in winter) All I wanted was appropriate pain killers, but life isn't that simple.First I had to check with my oncologist, who didn't think it was likely that pancreatic cancer would migrate to my right shoulder and that therefore the pain wasn't under his jurisdiction. I made an appointment to see a physician in family practice. He decided that the pain was, indeed, arthritis, and that I needed some sort of painkillers for it.

The problem was that I can't take most opiates (allergies) and I can't take aspirin or Motrin because of my stomach ulcers. I was afraid that the family practice doctor would hand me off to the GI doctor, but he just suggested that I stay on the Tylenol I'd been taking anyhow and if the pain doesn't go away we can move to something stronger, though he warned that something like that would make my brain feel pickled.

It would be nice if there was just one doctor who could handle everything, so I wouldn't feel quite so much like this:

Me and My Kindle

2010-01-25T09:15:00.002-05:00

Is it the best thing since sliced bread? Well, at the moment I have 4 1/2 pages of books in my index, which comes out to about 48 books. The problem is that I've read most of them, so what am I going to read next?

There are a lot of free books out there including anything that's not covered by copyright any more, so I've reread Pride and Prejudice, A Tale of Two Cities, Anna Karenina , and tried Three Men in a Boat, which I thought was funny when I was twelve. It seems a bit strange to read a classic electronically, but a kindle is lighter than a 450-page bound book. Much easier to read in bed.

You can also get a variety of Harlequin romances, Christian inspiration, and the first book in a long series (get 'em hooked)for free. I've run across some gems as well as quite a few books I delete after the first few pages. (I don't know why I even thought that His Lady Mistress would be worth reading, but on the other hand Faking It was more fun than I expected.)

I'm trying to keep a limit on the books I actually buy, but Amazon makes it much too easy to click-and-purchase. I feel like the kind of 18th-century aristocrat who never had to sully her hands with real money and never knew how much she'd spent.

But on the other hand, books are necessities.

The things you thought you knew aren't so

2010-01-21T09:32:00.002-05:00

This is the ornamental pear tree outside our house. What you can't see is the flock of a dozen robins in the tree. They're happily eating the freeze-dried pears. In the middle of winter.

Remember kindergarten when the teacher told you that the first sign of spring was when you saw a robin? I remember when my teacher did, and then we all dutifully colored in the red breasts and the spring flowers.

So.... maybe my kindergarten teacher (and yours, too) was wrong, and if so, are there any certainties left in the world? Or Climate Change is really happening, and if so, we're all in worse shape than I thought even in my most despairing moments.

On the other hand, we haven't seen any cardinals this year. Maybe the robins and the cardinals made a deal. "Look, you guys go south this winter and we'll stay here, check out the winter sports, eat some of those frozen pears you were raving about. Why should humans be the only snowbirds?"

Chick Lit and Cancer

2010-01-19T09:57:00.004-05:00

There I am, on page 153, reading along happily, and suddenly one of the older secondary characters starts getting thin and tired and I know exactly what's going to happen. She's got breast cancer, or maybe ovarian. Depending on the book, she'll either recover by the last few chapters, or she'll slip gently away surrounded by the loving women who supported her throughout.

I don't know why the authors keep zapping these characters, but I have my suspicions. One is that the characters, who tend to be gutsy earth mother types, are taking the readers' interest away from the protagonist, a thirty-something woman who is mired in an unsatisfactory life. We don't want the attention pulled from her and the husband who's ignoring her and letting himself get a little potbelly, and the children who take her attention away from the career that isn't quite right for her (she really needs something more creative) -- well, I'm bored with her, too, and more interested in the earth mother myself. So why not write a novel about her and kill off the protagonist instead?

And it's always a female cancer. As I've noticed, women in real life get lung cancer, colon cancer, and everything else except prostate cancer, but in these books it's always the breasts or the ovaries. Maybe this is to stress the femaleness of life, death and the other big subjects for the readers. Maybe it's because these cancers are what the readers are most afraid of. Or maybe, as my daughter suggests, it's because a case of female cancer is written into the contract with the publisher.

A couple of the books I've read recently that fit this are The Friday Night Knitting Club, The Pretend Wife (there are more, but I'm having a chemobrain attack). Don't get me wrong. I enjoyed both until the point where I threw the book across the room and Jerry said "again?" and I asked, "Why can't they ever get leprosy or shingles instead?"

Haiti

2010-01-15T09:04:00.004-05:00

As the news about the earthquake in Haiti and its results keeps coming in, I think of Regine from Port-au-Prince, who was my student a few years ago. She was sixteen and spoke no English at all. Already tall and elegant, she stood out at Keene High School like a peacock among barnyard fowl, and I think her first two years were extremely difficult. She worked hard, learned English, made friends, graduated, and went on to college to pursue a nursing degree. I was very proud of her.

I recently reconnected with her on Facebook. She continues to do well.

Her latest post was a request for our prayers. She still has not heard from her sister in Haiti and doesn't know who in her family is alive or uninjured.

As you think about the many thousands of people affected by the tragedy, please keep Regine and her loved ones in mind. It's easy for something like this to turn into just statistics and for us to lose the human faces in the devastation.

Green Bananas, Knitting and Bucket Lists

2010-01-13T08:53:00.006-05:00

Jerry's Christmas sweater, which I finally finished last week, after deciding that the pattern wasn't right and I should reinvent the collar. Of course you can't see the collar, but believe me, it's beautiful.

I almost bought some yarn on sale the other day, but I stopped myself. I’ve decided that I’m not going to spend the rest of my life dealing with yarn that is too hairy, too hard, too weirdly-colored (the technical term in knitting circles for a puddle of yarn that combines too many weird colors is “clown vomit”), or, basically that I don’t love.

This yarn was all of the above, but it was really cheap. A few years ago I'd have gotten it, just because some day I would find the perfect pattern for it.

Not any more. Now I’ll stick with those I really enjoy. I made a sweater a while back from a mixture of merino wool and silk, and it was like knitting a hot fudge sundae, an incredibly sensuous experience. After I finished that, I tried some fancy hand-spun yarn someone gave me, and it was splitty and full of little bits of grass, and I hated it, so I tossed it without even feeling guilty. Or not too guilty.

Instead, I resolve to buy yarn I love and start a new stash of yarn for projects that I may never get to, but every inch of it will be worth it.

Knitting even gives me some bucket list material. New yarns come out all the time, and while I’ve knitted with the standard wools and cottons and made a shawl with bamboo, I’ve never tried the trendy yarns made with corn, soy, or seaweed (truly). They sound like fun, though I wonder if I should attack them with knitting needles or chopsticks.

I know someone who got some possum fur yarn from New Zealand and made it into a scarf. Or it’s possible to get spun dog fur (note: greyhounds are not good for this), or more realistically but much more expensively, qiviut, spun from the inner coat of the musk ox and going for almost $100 for 300 yards. I figure it would cost at least $800 for a sweater, so I guess that, at least, is off my bucket list. Let’s not go overboard.

Besides yarns, there are techniques I’ve never given a fair try – lace, for example. Or there’s Fairisle, entrelac, and double knitting, techniques that I’ve read about only to shudder at the thought of following a chart. Maybe I need to challenge myself on some of these, though I refuse at this point to do something just because I “should”. And I give myself permission to quit if it stops being fun. Come to think of it, I always could have, couldn’t I?

Technology keeps winning

2010-01-10T09:43:00.003-05:00

I apologize, everyone. Here I was thinking that everyone had gone away and I was all alone here in cyberspace, feeling sorry for myself and neglected, and it was my fault for hitting the wrong button on the comment moderation tab. Jerry has tried posting a comment and it seems to have worked, so I think we're back in business. (And he didn't even write something snarky about my abilities to navigate.)

Thanks for the great suggestions on movies! There were some old favorites and some I'd never even thought of, so my Netflix queue is going to grow exponentially. Tomorrow's chemo day again (funny how it keeps coming around), the temp is going to be down around 0 degrees, and I'm looking forward to an evening wrapped in my new Christmas-present quilt while I laugh myself silly.

Whatsa matta? No sensa hyuma?

2010-01-07T09:04:00.000-05:00

Thanks to an email from Lin, here are some funny movie titles:

Raising Arizona
Romy and Michele's High School Reunion
The Bird Cage
Ruthless People
Overboard
Twins
Big
Ferris Bueller's Day Out
When Harry Met Sally
Galaxy Quest
Who Framed Roger Rabbit
10
Hocus Pocus
Groundhog Day
Planes, Trains, and Automobiles
In and Out
Curse of the Jade Scorpion
Mighty Aphrodite
Bullets Over Broadway
Small Time Crooks
Sleeper

Feel free to add more.

Funny Movies -- Your Favorites?

2010-01-04T09:51:00.001-05:00

I'm heading out this afternoon for the first chemo of the new year (yippie). Jerry and I have a tradition of watching funny movies on chemo day or chemofunk day -- for a couple of hours I forget the physical effects of the chemo, all those endorphins do their thing in my brain and I feel better psychically as well as physically.

We love the Marx Brothers, Mel Brooks, Peter Sellers, and other not-so-subtle performers and films, but not all of them. Don't Mess With the Zohan was a yes; Tropic Thunder a no. Monty Python, mostly a yes.

We do watch more nuanced films. Almost everything by Christopher Guest is a yes, for example.

So what are your favorite laugh-out-loud or at least giggle-at funny movies? What are we missing?

First Grandmotherly Boast of the New Year

2010-01-02T09:48:00.000-05:00

First Night in Northampton, with Max playing with two of his bands, School for the Dead and The Fawns. Wonderful as always, but even more wonderful was that Miles had insisted on bringing two shakers along. That not-quite-five-year-old sat still for almost two hours, playing along with the music, his eyes fixed on the musicians. Sometimes he hit the first beat of a measure, sometimes the off-beats, and at least once he got different effects with each hand -- this kid was not just making noise. He was playing music.
I love to see the torch -- or the shaker -- being passed to a new generation.

Happy New Year

2009-12-31T09:21:00.000-05:00

For me, actually getting to 2010 is an accomplishment. As I think about this last year, I don't have any particularly philosophical or witty insights to share. It was a good year which has given me all kinds of wonderful memories, and that's enough.

No resolutions for 2010, either, except that Psalm 118:24 has been running through my head a lot. (Ha! Some of you thought that I wasn't religious enough to know a Psalm, and others aren't religious either and don't know just what verse I was thinking of. Well, do what I did -- google it.) As far as I'm concerned, most of the rest of the psalm is testosterone-filled Me 'n' the Lord beat up on all my enemies (verse 12, for example), and then there is the wonderful verse 24, which makes for as good a resolution for the new year as I could ask for.

Okay, it's "This is the day the Lord has made. We will rejoice and be glad in it."

2009-12-29T08:31:00.000-05:00

Just after I wrote the last blog, the dryness and heat of the corner of the living room hit our Christmas tree, and leaves and oranges started cascading onto the table. As I took down the ornaments, more fell until the tree was almost bare. We watered it well and took it out into the sunspace, hopefully to recover.

I thought of writing something about this all being the snarky response of the universe to my sentimental post, but Jerry put it much better. "Just tell them," he said, "that yesterday we had a great harvest of oranges from the tree in our living room."

I think I'll make marmalade.

The changing face of Christmas

2009-12-28T09:33:00.000-05:00

First of all, it was a wonderful Christmas, including all of the warmth, joy and love I could ask for. (The food was a lot better than last year's hospital meal, too.)

It's interesting, though, how traditions have changed over the years, and our "Christmas tree" symbolizes some of the changes. We didn't want a full-sized tree and don't like fake ones, so we did what worked for us. More and more what works is becoming something less than the traditional while trying to reflect the traditional, and not just for Jerry and me.

For one thing, I don't think I know anyone whose family all got together at the same time in the same place on Christmas Eve or Christmas day (I can't speak for Hanukkah, though I'd think that seven days would give more leeway). What do you do if you have at least three sets of grandparents and a couple of ex spouses or partners, some of whom don't get along with each other, to see on The Day? You need a spreadsheet to figure out the logistics. Usually what happens is that The Day stretches out to two or three, or maybe a full week that crashes into the New Year's Eve celebrations. By the time everyone has celebrated with, eaten with and given gifts to everyone else, they are all exhausted, cranky and ready to avoid the whole family for at least six months.

What's the solution? I have friends who have made themselves miserable this season because "it isn't like it used to be." I wonder if it ever was, but I'm no expert. When I was growing up in Catholic and Muslim countries, my family's Christmas was never what the magazines and movies showed, so I never expected it to be or assumed that back in the States whole intact families were all going to the midnight services and then drinking eggnog together. Maybe they did -- but does that mean they always have to?

An orange tree makes a great Christmas tree. Celebrating with family on a day that doesn't happen to be December 25th is wonderful. Getting rid of stressful traditions and building new ones keeps the holiday meaningful.

Music hath charms

2009-12-21T08:58:00.000-05:00

The trombone section at our last concert (we do clean up nice, don't we?)

Music therapy has been shown to help cancer patients, though music therapists always issue two warnings -- first, that music doesn't take the place of traditional therapies, and second, that it should be carried out under the care of a qualified professional. I think they're saying "Don't try this at home." They don't say anything about school gyms, churches, community centers, or any of the other places we've played during our Christmas season.

And it's been wonderful.

Therapeutic, too. Who could ask for anything healthier than to make joyful noises with a bunch of people who don't wince when I accidentally miss an accidental, who make jokes at the right (and sometimes the wrong) moments, and who seem to be having as much fun as I am? Trombonists, or at least the ones I know, don't suffer from the competitiveness of trumpet players, the ego of flutists, or the nerves of double reed players.

Not all music-making is therapeutic, though. A Romanian high school student of mine once warned me that it is a well-known fact, in Romania at least, that all bassoon players eventually go mad. It's something about the way the vibrations hit the nerves in the chest. He told me that trombone players don't have to worry about going mad, because you have to be crazy to take up the trombone in the first place. Nice to have one less thing to worry about.

Us and God's Little Creatures

2009-12-15T09:35:00.001-05:00

The picture is actually from last spring -- these are the wild turkeys who live in the neighborhood and love the dropped apples from our tree. I saw them the other day, first time this fall, and the flock is even bigger than it was last spring. I counted thirty, all gathered around the crab apple tree, one so excited that he managed to fly to the top of the tree (a whole six feet), land on a branch, and chomp away at the crab apples above his clan's heads. It's always fun to watch the wild turkeys.

On the other hand, there's our skunk. No picture, because last week when I saw him sniffing around our garage door I quietly and slo-o-owly went in the front door. Our next-door neighbor told us proudly that he always puts out food for the skunk, which explains the glossy coat, weight, and general air of satisfaction. Jerry and I don't share the satisfaction. We just wish the skunk would live over at the neighbor's house instead of under our barn.

And then there are the squirrels. When the weather got bad last week several of them decided to move indoors for the winter. They chewed a hole in the grill over the gable, got into the attic, and ran races with each other every morning just before we were ready to wake up. Something had to be done. Jerry covered the wood grill with mesh. They got in through the edge. He nailed it down harder. They went through the other grill, higher up. He put one ladder up to the roof and nailed another to the roof, and balanced a Hav-a-heart trap baited with crackers and peanut butter on the roof ridge. He nailed the trap in place. That night the wind blew the ladder down and the bait out of the trap, though thanks to his workmanship the trap didn't come down. The squirrels retreated into the attic, where it's nice and cozy and there's plenty of room for their races. Jerry got some heavier mesh and rigged it up around a large funnel so that, theoretically, the squirrels could get out but not back in. The squirrels spent the next day chewing the plastic funnel and enlarging the hole. Jerry, now seeing this as a personal challenge (man against nature) went out and got a metal funnel, which he modified so that sharp edges would discourage the squirrels from even trying to get into the attic but would still allow them to get out. (Man:0 Nature: 3)

I think the latest may have worked, but last night Jerry kept waking me up by saying at intervals, "Did you hear that? Are they back in? Next time I try a shotgun."

Stay tuned.

A year ago today

2009-12-11T08:17:00.001-05:00

The ice storm froze roads, downed power lines, and brought our area to a standstill. Jerry and I didn't lose power, and didn't realize for three days that our next door neighbors were managing with wood stove, candles, and going out for meals and showers. The town set up a warming space in the community center, complete with power and wi-fi so that people could charge their phones and check their emails.

All of this was completely overshadowed for Jerry and me, because on the 15th I went into the hospital for emergency surgery on a perforated duodenal ulcer. I was in the hospital for ten days (getting sprung on the 25th was the best Christmas present of all), being cared for by nurses and staff, many of whom didn't get electricity back in their homes for several days, but who were all both professional and gentle. (We still wonder how Audrey's chickens are doing.)

Now, a year later, most of the uprooted trees and broken branches and debris have been cleared away. All of the emergency services have decided that they did a pretty good job last year but are now better prepared for any future disasters. And the stitching on my duodenum has held beautifully.

Physical effects of loneliness -- not me

2009-12-09T08:24:00.000-05:00

In Cancer-Ridden Rats, Loneliness Can Kill
Included In: Psychology / Psychiatry; Preventive Medicine
Article Date: 08 Dec 2009 - 5:00 PST

Socially isolated female rats develop more tumors - and tumors of a more deadly type - than rats living in a social group, according to researchers at Yale University and the University of Chicago.

"There is a growing interest in relationships between the environment, emotion and disease. This study offers insight into how the social world gets under the skin," said Gretchen Hermes, first author of the paper and a resident in the Neurosciences Research Training Program in the Yale Department of Psychiatry.

The leading suspect seems to be stress, triggered by being separated from a group. Stress is linked to many negative health outcomes - including activation of cancer-promoting genes.

To test the hypothesis, researchers followed the development of spontaneously occurring mammary tumors in rats that lived in groups or in isolation. Although both the solitary and social animals developed tumors, the isolated rats developed 84 times the amount of tumors as those living in groups. Those tumors also proved to be more malignant than those found in rats living in groups.

The results show that health effects of isolation need to be studied more closely in a broad range of human disease, particularly psychiatric disorders, Hermes said.

...."The results of this study make a physiological link between loss of the social network and disease states, and may help explain the shortened life expectancy of individuals with mental illness."

Source:
Bill Hathaway
Yale University

So is this another example of mind-body connection? Or is it an example of mind-body-social group connection?
If social isolation is a risk factor for disease states, there is yet another risk factor(like obesity, smoking, and eating red meat) that doesn't explain my situation. (And I'm neither male nor African-American -- two other risk factors for pancreatic cancer.)
On the other hand, I'm sure that my healthy habits are part of what has kept me going so well, so far. And this study (even though I'm not a rat) suggests that, as Jerry and I have said all along, the love and support of family and friends is another big part of my continued good health.

Concert Season

2009-12-06T09:36:00.000-05:00

The winter concert of the Keene State College orchestra was Wednesday. Here they are, setting up (the first bassoon is to the left of the harp). They did a wonderful concert, including The Egmont Overture, the Peer Gynt Suite, Night on Bald Mountain, and a suite from Carmen.
(No, they didn't play on a cruise ship. It's tilted because I just can't get horizons straight.)
They did all that work for just one concert, but oh, it was lovely.

And here is Westmoreland Town Band, setting up in the Troy Congregational Church for our second concert of the season. I think we have a classier venue, at least to look at. Of course, we're so spread out that we can't actually hear each other, but frankly that can be an advantage.

Our first concert, at the nursing home, was marked by a train wreck in The Canadian Brass Christmas Medley at the point where the first trumpet and the first trombone play a haunting duet. Unfortunately, the trumpet, whose meds definitely need adjusting, came in a measure after he was supposed to, and continued to trail through the entire section. The duet was more than haunting. It sounded quite modern: The Canadian Brass and Zombies. However, the audience, most of whom had never heard of The Huron Carol, didn't seem to mind. They sang along anyhow.

Last night we played at the church, and because everyone had to get there through the first snow storm of the season we had a small turnout. We attacked the Canadian Brass again, and this time the first trumpet didn't play the Huron Carol at all. Much as I love trombones, I have to admit that this doesn't quite work as a trombone solo.

We have another concert today. I can't wait.

CA19-9, CA 125, PSA, B2M and like that

2009-12-04T08:54:00.000-05:00

I got the results of my latest CA19-9 on Wednesday. The good news is that it hasn't gone up much, but the bad news is that it has gone up (110 in October, 115 in November). This isn't a major jump, since the numbers can go up into the tens of thousands, so it has basically remained stable for the past three months.

I started wondering, though, about other tumor marker blood tests and discovered that there are a lot of them out there -- Wikipedia lists 24. They range from the most familiar, the PSA for prostate cancer, through CA125 (ovarian), CEA (colon and rectal), and B2M (multiple myeloma, CLL, lymphomas). All of these have been developed since 1965, when CEA became the first successful blood test for a common cancer.

So if we have all these great tests, how come people are still diagnosed too late?

There are problems with these tests:
* Most healthy people have at least some of all these markers in their blood, and so far it's impossible to tell which people are healthy and which have an early case of cancer.
* On the other hand, some people don't show the markers at all. About 5% of people with pancreatic cancer don't show a CA19-9. If you just went by the marker, they'd look healthy.
* Elevated markers don't always show cancer. An inflammation or other problem might temporarily raise the marker.
* The markers themselves vary from month to month in a kind of sine wave (I'm waiting for the downward swing of mine).

So why worry about the tumor marker levels at all? Basically, because except for CT and PET scans, the markers are, at least for some kinds of cancer, the best thing we have. And that, while it's better than nothing, is really frustrating.

It's about the turkey

2009-11-30T09:00:00.000-05:00

It was a wonderful turkey -- and a wonderful day. Thanks, Anya and Max.

As far as Thanksgiving goes, I'm a traditionalist. I appreciate that the vegetarians and flexitarians among us won't eat turkey, and I'm willing to make an exception for grilled salmon or some fancy veggies, but for the rest of us? It's gotta be turkey. I'm almost shocked at the friends this year who had (in one case) pork loin with quinces or (in the other) roast goose a la perigord. These are delicious and special -- but they aren't Thanksgiving.

When I lived overseas, Thanksgiving was, more than Christmas or even the fourth of July, the holiday that brought Americans together. I remember how the women of the American expat community always struggled and improvised to put together something approaching a real Thanksgiving feast, successfully enough that our Non-American friends begged for invitations.

There was only one time that American imaginations failed. In Somalia we said the hell with it and went to the Chinese restaurant for sweet-and-sour wart hog. It just wasn't the same.

Every Thanksgiving, every family gathering, is a chance to reconnect. Sometimes, when times are bad, there's a feeling that we're circling the wagons. Other times, we celebrate growth and success. There's always the feeling: we're here. We made it through, and we're together.

And besides, there's the turkey.

Thanksgiving

2009-11-25T10:03:00.000-05:00

I have so much to be thankful for. To keep this from turning into a Stephen King-sized book, I'm going to skip the family and friends I value and appreciate every day and take a look back at the past year. Here's just a few snapshots of what I am thankful for this year, without a lot of comments.

November: Obama's election. I was here to see it, and no matter what challenges he faces or whether I agree with all of his decisions, I am proud of what our country did in electing him.
December: The wonderful people at the Cheshire Medical Center who took such good care of me during and after my emergency surgery -- while dealing with the aftereffects of the ice storm.
January: Being able to eat real food again and feeling my zest for life come back.
February: The first anniversary of my diagnosis. I beat the odds.
March: Our trip to Cancun. I like luxury.
April: Our trip to northern Minnesota. And the volunteer cherry tomato that grew in our sunspace that we ate, ceremonially.
May: First concert of the season for WTB. It's wonderful to play with them again.
June: Boston trip with the group that has been Doing Boston together (mostly) for something like twenty years.
July: The incredible trip to Utah, the highlight of the entire year.
August: Miles stayed overnight with us.
September: The jam and jelly factory went into full production mode.
October: Cinda's visit. New car. Max and Anya and Miles came up for the Pumpkin Festival. (October was full of good stuff!)
November: The wonderful kitchen project is done. I am so spoiled.

National Curry Week in the UK

2009-11-22T09:31:00.000-05:00

My online friend Margaret, whose url which I suddenly am unable to link to: http://margaret.healthblogs.org says that "November 22-28 is “National Curry Week” in the UK.... A Google Alert this morning took me to an interesting Liverpool Echo article (http://tinyurl.com/ydmobdo), which includes information on turmeric, chilli, garlic and ginger (and a curry recipe, too, on page 2)."

It seems as though a good curry masala includes just about every anti-inflammatory and anti-cancer substance you could ask for, good for everyone, not just those of us with cancer. And delicious.

So -- Americans are going to have all these leftovers this weekend. A good curried turkey dish (check out http://www.curryhouse.co.uk/chef/turkey.html) will be good for your health and will increase cooperation and understanding among Americans, Indians, and Brits. Who could ask for anything more? Except to make the links work.

Julie

2009-11-17T10:02:00.000-05:00

Last week my friend Julie died of pancreatic cancer. While the disease was one thing we had in common, there were others. Her husband had been one of the founding members of the Keene writers' group. She was part of the local Friends Meeting at the same time as my family was. She played cello in the local orchestra where Jerry plays bassoon. Our lives, while not close, had many meeting points, even before the day I called her to say that I was newly diagnosed and had heard that she also had pancreatic cancer. She immediately arranged for us to meet so that she could share her own experiences, and this first meeting turned into an occasional get-together for an "anti-cancer meal," including as many healthy (and delicious) foods as we could think of, and conversations that included but were not limited to our states of health.

It isn't often that I get words of wisdom from TV shows, but a bit of dialog from House MD has stuck in my mind. A patient wanted to check herself out of the hospital so that she could go home and "die with dignity." House went into a rant, saying "You can't die with dignity. No one dies with dignity -- all you can do is live with dignity."

Julie proved him wrong. Both in her living and her death she showed immense dignity and grace. I will miss her.

Chemobrain: I've got it

2009-11-13T08:58:00.000-05:00

A couple of books have recently come out announcing (surprise, surprise) that chemobrain actually exists. It's like false labor. Ever since Lucy roamed around East Africa, women have had false labor, but the medical establishment didn't believe in it until Drs. Braxton and Hicks studied the phenomenon and named it. I bet they were both men, too.

In any case, there's now been research on what some experts are calling "cancer- and/or cancer-therapy-associated cognitive change." (They would, wouldn't they.)

In one survey, primarily of breast cancer patients, at least 50% rated their symptoms as moderate to severe in the categories of
*lack of concentration
*short-term memory loss
*difficulty with word recall
*inability to organize daily tasks
That's not to mention the dyslexia, problems with interruptions, fogginess, and problems with follow-through of projects.

However, the experts assure us cheerily that most people regain at least some of their smarts after chemotherapy stops. For those of us whose cancer is a chronic condition that depends on indefinite chemotherapy, there's an image of brain cells running out like sand in a timer -- not a cheery thought.

I've been lucky. As far as I can tell, and please don't correct me if I'm wrong, I've only had two major cognitive changes from all my years of chemo. First, I have real word retrieval issues, and wouldn't you know, the problems always seem to happen when I'm telling a story to several people at once. I suddenly lose a key word. I grope madly for it, while the listeners wait patiently for me to be profound, or witty, or even coherent. I finally grab at something, anything, to finish the sentence. The word is usually blindingly umm, starts with an o, has three syllables, what is it? blindingly ... clear, but that isn't it exactly ... easy to think of.

The second isn't even a problem, though it would be if I were still a student or a teacher. I can't remember anything I've read for any length of time. I can pick up a book I read a month or two ago, reread it, and enjoy it as much as I did the first time. It's nice, because I read so fast that now I don't have to worry about running out of reading material. This isn't true of books I read years back, by the way; I remember those clearly.

Of course, there are always upsides to anything. It's a great excuse for any kind of forgetting or fogginess. Jerry once claimed that he had Chemobrain Through Lateral Transmission.

Some people

2009-11-10T10:28:00.000-05:00

A nice chat in the infusion room with a woman whose daughter had accompanied her to pick up a continuous chemo system. She was going to get a fanny pack to hold the drugs which would be administered through her port while she went about her daily business, getting the chemo 24/7 for several days. However, there had been a glitch and the system wasn't ready.

She and her daughter seemed upbeat and friendly, and we exchanged the usual what-are-you-here-fors. She has esophageal cancer. Most of the time, though, we talked about Scrabble. She was clearly a good player, knowing about qi and wiz, looking over Jerry's shoulder and spotting good plays, so we agreed that if our schedules ever lined up it would be fun to play together.

As time went by, though, she got more and more annoyed at having to wait. Finally I overheard her saying to her daughter, "Well, it looks like we'll have time to go out for a cigarette," and they got up and left. They came back rather quickly, probably after they found out that Dartmouth-Hitchcock is a non-smoking campus and they'd have to walk a fair distance to get to where they could smoke.

So.... am I totally bigoted in being horrified that someone on chemotherapy for esophageal cancer is still smoking? I found myself emotionally pulling away from this very nice woman just because of that. On the one hand, who am I to judge anyone else? On the other, how can she?

Hoofbeats

2009-11-08T09:03:00.000-05:00

When the doctors finally put my symptoms together and we found out that I had pancreatic cancer, one of them explained why it had taken so long. "In medical school they told us that when you hear hoofbeats, the first thing you should think of is horses, not zebras." In other words, the common explanation is usually the right one.

But when you're in a situation where the common explanation wasn't the right one, you tend to think zebras the next time you hear the hoofbeats.

Last week I started coughing, so of course my immediate thought was metastesis. What else could it be? Jerry, more realistically, said that I sounded like I was coming down with a cold. I got out the zinc, vitamin C, and my new best solution, elderberry extract, dosed myself up with all at frequent intervals, and drank lots of tea with honey and lime, and I feel fine.

Sometimes they really are horses.

The Kitchen

2009-11-05T09:22:00.001-05:00

Jerry said to wait until the tiles for the backsplash are in, but I couldn't. He also has the new and improved island to do, but meanwhile I'm cooking and enjoying the spaces, the prep area, the SINK, and the window into the laundry room.

The bright pumpkin orange ended up a bit too bright, so Jerry toned it down to more of a turmeric color, and I love it. The backsplash will be the same burgundy as the trim.

Gorgeous, hmm?

Signs and Portents

2009-11-03T08:58:00.000-05:00

We live at the southeastern corner of this crossroads. I took the picture from Pleasant Street, which is the official street we live on, looking at the signs for (from left to right) Ryan Road, Frost Hill Road, and Bixby Street.

The more I think about this, the more confused I get. For one thing, even after forty years of teaching ESL, I'm not sure what differentiates a road from a street.

For another, this picture sums up just why it is that people from, say Utah just to pick a wild example, get so confused in New England. Four roads (streets?) meet at an otherwise uninteresting point, and instead of road A crossing road B and continuing to be road A, it suddenly becomes road C. Why?

Then there's the question of the names themselves. Pleasant St. is simply and appropriately named. Frost Hill Road is clear, except to the flatlanders who come around during leaf peeping season and want to know if this is the actual road that the poet lived on (someone actually asked me that once). But who were Bixby and Ryan, and what did they do to deserve the honor?

My big question, though, is why there are only three signposts at the corner. Even though Pleasant St. is the main road up the hill from the town, it doesn't rate a sign of its own.

Perhaps this is all some sort of philosophical metaphor. Here I am on this unlabeled (but pleasant) street, at a sudden crossroads in the middle of nowhere, facing cryptically named roads leading off -- where? Should I be thinking in terms of treatment options, lifestyle choices, or my immortal soul? I won't even get into the fact that one of the roads, but I won't tell you which, is a dead end.

Or maybe this is the place where the traditional New England jokes about lost flatlanders originated.

"Does it matter which road I take to get to Jaffrey?"
"Not to me, it don't."

Progress!

2009-11-02T08:49:00.000-05:00

Jerry wouldn't agree, but I think the whole kitchen project has gone incredibly smoothly. The walls and floor are now probably more true and even than they ever were before, the cabinets are all in and filled (drawers that slide in and out without tugging!), the countertop and SINK are in and working, and the first coat of primer is on the walls. Jerry's putting the second coat of primer on now. Wait till you see the final colors.
I spent Saturday morning putting things away, and, as promised, throwing out the worst of the paper goods. It's a wonderful feeling.

Anniversary season again

2009-10-28T08:57:00.000-04:00

With all of the kitchen and car projects, I let an anniversary go past. Two years ago on the 12th of October I started getting the symptoms that eventually led to my diagnosis. I look back on the four months between the onset of the symptoms and the diagnosis itself and remember that the pain and confusion were just a part of other health problems -- we worried that the operation on Jerry's ulnar nerve wouldn't work and would leave him unable to play. We worried that his cardiologist would find something odd about his aortic valve, and he did, though it turned out to be nothing to worry about. Jerry also had a painful UTI during this time. And a few weeks later, I took my fall down the slippery hillside and completely blew out my posterior tibialis tendon. It wasn't surprising that the stomach pain and jaundice seemed like just one more thing instead of The Big Thing that it's all turned into.

Yet here I am, two years later, and in amazingly good shape. Yes, I take a variety of pills every day, though a lot of them are self-prescribed vitamins and minerals. Yes, my energy is good except when it suddenly disappears. Yes, I have to plan each week that I'll spend one afternoon at the treatment room and the next day lying on the couch feeling as though I'm coming down with the flu. Yes, I'm relieved that I'm not still working and getting exposed to all the germs little kids share with everyone around them.

But these are small things. What's important is that family and friends continue to support me. Every day truly is precious. There are still new things to learn, laugh at, and glory in.

And next year's anniversaries to expect.

A quiz for you: Which is the new car?

2009-10-27T10:11:00.000-04:00

Yes, we did it. A 2010 Kia Forte, and while it doesn't have the heated seats and GPS they tried to sell us, it still has enough bells and whistles to give us a learning curve, including a neat system in which you can move from automatic to a kind of manual transmission without a clutch. Just right for our needs.
And, of course, we still have the '76 Volare for backup, though I'm not sure if it can actually back up.

It's nice to get that out of the way. Does anyone really like buying a car? My fantasies never include long, fast car rides with the wind in my hair and loud music surrounding me. I just want to get from point A to point B as smoothly and efficiently as possible. And up the hill to our house in the middle of winter.

Remodeling Kitchens Can be Hard on a Marriage

2009-10-25T09:07:00.000-04:00

We've been through this before. When Jerry and I got married, we (or at least I) never thought that owning a house would be in our future. I'd grown up in a series of rented places in strange countries, with a father who was so unhandy that he wouldn't let me push pins into the walls for posters because he wasn't sure how to cover the holes up when we left. So marriage to MacGyver led to some real culture shock. Not only did he want us to buy a house, but he wanted to remodel everything, including the kitchen.

We started from opposite philosophies. In his mind, the perfect kitchen was a 4' by 4' square. The cook stood in the center and swiveled to get to everything. In mine, the kitchen was the heart of the home, enormous, welcoming, and who cared if you had to carry a potful of boiling soup across a half acre to get it from the stove to the table.

This may have been why our only vicious fight in the past 42 years was over some detail about a kitchen remodeling three homes back. (We won; we're still together.)

The present project has gone amazingly smoothly, in part because I think Jerry has come to his senses about size. His wistful suggestion that if we simply cut the kitchen in half we'd have room for a grand piano didn't really fly.

We haven't fought about cabinet placement or materials, the new microwave/hood exhaust over the stove, or even countertop material or color.

However.... We're still in disposable mode (the sink doesn't get delivered until maybe Friday), and tempers are beginning to fray.

Somehow, over the past 25 years in this house, we'd accumulated an amazing number of paper plates and napkins, and plastic utensils. Every time we had an informal party we'd buy more, and then stash the leftovers where we couldn't find them again. The latter are supplemented by my packrat tendencies. I collect little knives, forks and spoons from airplanes, fast food joints, and occasionally from potluck parties. After all, they're perfectly good.

Well, they aren't. This experience has pushed me to discard the forks with missing tines and the spoons with the jagged edges, and to suggest that we should throw everything out and get some decent ones.

Jerry, caught by his own packrat-itude, refuses, and, certain that we're going to run out of paper plates and have to eat off the bare table with our bare hands, goes out and buys more to supplement what we've got. But because it's only for another week or so, he gets the cheapest. Coffee exploded in his crappy styrofoam cup in the old microwave yesterday. And somehow we've ended up with a couple hundred knives and three spoons.

I don't do this often, but I'm laying down the law. The minute the new sink is in and we can really truly wash dishes again, I'm throwing out all the limp paper plates, defective coffee cups, and slasher utensils.

Jerry says, "But we might need them some time."

I say this is beyond physical need. It's a matter of our marriage.

Kitchen progress

2009-10-19T09:32:00.001-04:00

While we were out admiring pumpkins, Jerry kept busy. He took out everything but the kitchen sink, and then he took out the kitchen sink. We're using paper plates and plastic, and feeling as though we're totally destroying our carbon footprints as we do this. The nondisposables, mostly knives and pots and pans, Jerry washes in the bathroom sink, now tastefully decorated with a drainboard that slopes into the bathtub.
It works, at least for the time being.
Jerry says that when people say that "they don't make things like they used to" the only answer is "Thank God." Hiding under the kitchen walls and floors all these years were substrates made of what looks like cardboard. I don't know what was holding the kitchen together -- unless it was what J put in when we first moved here.

It strikes me that this is a real Green Bananas project. We have faith that my health is going to hold, not only for the next few weeks through the process, but for a long time after that.

Meanwhile, I'm enjoying the feeling of camping out. Remember Colonial House and Frontier House? I think they could get a good reality show out of Kitchen Remodeling House.

Pumpkin Festival

2009-10-18T10:54:00.001-04:00

Keene's Pumpkin Festival was Saturday, with a record of 29,068 carved pumpkins lining Main Street and on scaffolding in two places. Actually, Boston beat our record three years ago (talk about Godzilla meets Bambi). Lots of creative, beautiful, funny carving; lots of pumpkin-flavored goodies; good weather, good time. Miles liked the giant pumpkins, the bouncy booth, and the pumpkin that looked like a hamburger, with pumpkin seeds on the "bun."
I loved wandering around with Max, Anya and Miles. Jerry loved staying home and avoiding the crowds.

Life is Good

2009-10-15T08:18:00.000-04:00

It's been a wonderful last couple of weeks, despite Jerry's trying to pull rusty nails out of the wall with his bare hands. One of the nurses at the cancer center pulled his stitches on Tuesday, and his hand is fine. He can play bassoon and continue with the kitchen remodeling with no problems.

This past weekend was full of family -- what a joy! Cinda should visit more often (hint).

Of course, there are also physiological reasons for my feeling so up. My various blood counts (white counts, red, platelets, neutrophils or whatever they are) had been way down for a while, but as of last week had gone back up to normal. I really think it makes a difference in my energy levels and my spirits.

And other good news is that my CA19-9 has gone from 129 to 111 this month.

With all of that, I went to band rehearsal three hours after my last chemo. The next day, usually my "chemofunk day" I even got out to exercise. I could get used to feeling like this.

Family, wonderful even when the flash doesn't work

2009-10-11T09:16:00.000-04:00

Me, Max, Miles

Me, Cinda, Max

Cinda, Jerry

Anya, me

I know that there are some incredible families out there, loving, joyful, intelligent, and funny.... but mine is the greatest.

Sometimes things gang aft agley

2009-10-07T18:08:00.000-04:00

Yesterday I wrote that the kitchen project was on hold during Cinda's visit, but I was wrong. By yesterday afternoon, while she lay on the couch recovering from the redeye flight and I lay on the other couch recovering from chemo, Jerry was out creating storage for the cabinets that are to be torn out. The storage, by the way, in the top picture, is made from boxes he built in Liberia which have followed us and been used everywhere we've lived since.

Cinda and I moved everything from the cabinets into the temporary storage (pots and pans are, for the moment, on the end of the island), and Jerry started the demolishing project.

Throughout our marriage, there have been times when I come home to find a blood-stained note on the kitchen counter: Have gone to ER, don't worry. . This time, with much less drama, when I came back from the Y he showed me a large bandaid over his palm and said it was nothing.

I shouldn't have believed him. We went out for a very nice lunch, and when we came back and he was getting ready to go to orchestra rehearsal he stripped off the bandaid and asked me to help put a new one on. It was like looking into the Grand Canyon.

Cinda and I sent him off to the ER. Because he wanted to go on to orchestra and we just have one car, he had to drive himself.

Result? Nine stitches and a tetanus shot later he came home, having missed orchestra. No damage to blood vessels or tendons, so he's lucky.

Me? I was going to write a sentimental post about how much having Cinda here means to me, and it does. But there's Jerry, wounded warrior, and part of me feels almost happy to be the one who's doing the fussing and being the caretaker for a change.

All ready

2009-10-05T15:56:00.000-04:00

The new closet is done, and as you can see, beautiful. Jerry's moved the refrigerator back against the wall, out from the middle of the room. He won't start the next phase of the remodeling for a week --

Because Cinda arrives for a week's visit tomorrow. Yay!

H1N1 and me

2009-09-29T09:04:00.000-04:00

No, I don't have it. And, apparently, I'm not at risk. You can't imagine how great this makes me feel. I get my regular flu shot and make Jerry get his every year because the experts always point out that people with compromised immune systems including people with cancer are especially at risk.

But the CDC lists the following in descending order as those most at risk for H1N1:
*pregnant women
*those with asthma or diabetes
*people between the ages of 6 months and 24 years
*health care workers
*people who care for infants
*people between the ages of 25-64 with other health problems

I'm not in there. This makes me feel so ... healthy. Sure I'll get the shot, eventually, but right now I'm glad to be in line behind all those vulnerable people. Me, I'm made of steel.

Why we need a new car

2009-09-25T08:42:00.000-04:00

Or do we? Could we get along comfortably with just one car (okay, two if you count the 1976 Plymouth station wagon that we use for going to the dump and getting sheetrock)? But the other real car, which means the one I can drive, is getting old and rusty, and has trouble getting up our hill in the winter. Last December we needed a car that would get us, post ice-storm and nervous, to the ER at 3:30 a.m. It would be nice to assume that we won't have any more emergencies, but who knows?
We loved the KIA, but the body of mine at least seems to have been made of tinfoil, so we're thinking of something a bit more solidly built. Other requirements: small, all-wheel drive, automatic. Any suggestions?