Thursday, August 19, 2010

Sad news

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.

Monday, August 16, 2010

update

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.

Friday, August 13, 2010

How it feels from this end

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.

Thursday, August 12, 2010

How to Visit

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.

Sunday, August 8, 2010

hospice and the bed

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.

Thursday, August 5, 2010

everything takes a long time

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.

Wednesday, August 4, 2010

The latest excitement

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.

Monday, August 2, 2010

Update

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.

Friday, July 30, 2010

Wonderful food, wonderful fantasy

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.

Monday, July 26, 2010

The Game -- The Last Supper

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?

Sunday, July 25, 2010

More nuts and bolts and logistics

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.

Wednesday, July 21, 2010

Heading into the next stage

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....

Friday, July 16, 2010

Onions, continued

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?

Tuesday, July 13, 2010

Bumps in the path

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.

Wednesday, July 7, 2010

I was supposed to have chemo today....

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.

Monday, July 5, 2010




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.

Tuesday, June 29, 2010

Because you can't be gloomy 24/7

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.

Monday, June 28, 2010

Quick update

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.

Friday, June 25, 2010

House projects


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?

Tuesday, June 22, 2010

Yesterday's meeting with the oncologist

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.

Sunday, June 20, 2010

Peaceful getaway


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.

Wednesday, June 16, 2010

Incredible unbelievable weekend

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!

Friday, June 11, 2010

More cheers for curcumin

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.

Tuesday, June 8, 2010

Another day of full-body macrame


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.

Monday, June 7, 2010

The Last Lecture

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!

Friday, June 4, 2010

Side Effects so Far

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.

Monday, May 31, 2010

Wonderful Weekend in a Wonderful Town

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.

Tuesday, May 25, 2010

First FOLFOX


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.

Monday, May 24, 2010

Slight digression into knitting (and about time, too)
















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."

Friday, May 21, 2010

I made it!


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.

Tuesday, May 18, 2010

Moderate encouragement

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.

Thursday, May 13, 2010

Random things I love these days

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.)

Tuesday, May 11, 2010

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


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.

Friday, May 7, 2010

Next steps

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.

Wednesday, May 5, 2010

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

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.

Friday, April 30, 2010

Interim update

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.

Tuesday, April 27, 2010

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

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.

Friday, April 23, 2010

CAT scan

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.

Sunday, April 18, 2010

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."

Thursday, April 15, 2010

Praise and complaint

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.

Tuesday, April 13, 2010

Nature's first green is gold....



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!

Friday, April 9, 2010

Coffee. Sigh.

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.

Thursday, April 8, 2010

Losing weight

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.

Friday, April 2, 2010

Summing up


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.

Wednesday, March 31, 2010

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




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.

Tuesday, March 30, 2010

Sailing Away to Hawaii (first few days)

(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.

Wednesday, March 10, 2010

And now for something completely different....

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

Saturday, March 6, 2010

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

  1. 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.
  2. 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.
  3. The other morning, I caught a faint aroma of skunk around our barn.
  4. You can tell just which drivers ahead of you know the roads by whether they swerve to avoid potholes or bounce right into them.
  5. Maple trees are attached to each other with blue plastic tubing.
  6. When the snow falls it doesn't last as long as before, and it's much heavier to shovel.
  7. Teachers can tell you that there are 66 more days of school -- but who's counting?
  8. A few early bird Florida license plates have already been spotted.
  9. The cat meows to get out on the porch, then realizes that it's still too cold and glares at me accusingly.
  10. Jerry and I leave on vacation this coming week.

Thursday, March 4, 2010

Joining the club

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.

Sunday, February 28, 2010

Why some of us love winter more than others of us

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.