First day of prep

Now I really feel that things have started moving (darn it; considering tomorrow, that's not what I mean). But the countdown has definitely started. Today I'm on what Jerry is calling the Trailer Trash diet: no fruit, veggies, or complex carbs, just fish, poultry and eggs, dairy, and white bread and pasta with no tomato sauce. I'm thinking of an aioli to go on the pasta. Garlic isn't a veggie, is it? Tomorrow is clear liquids and the trip to Lebanon.

So here's how I'm visualizing things:
Laydeez and gentlemen, in this corner we have Pancreatic Cancer. Big, mean, nasty, seldom loses a fight. You may think you have it beaten, but it'll pop back up for more. Full of dirty tricks. Its reputation is enough to terrorize the unwary.

In the other corner... Lucie, looking pretty wimpy in comparison.
But that's if you don't look at what she has on her side. I know I've posted lists like this before, but this bears repeating, especially right now.
*Otherwise good health. No problems with diabetes, cholesterol, blood pressure, or anything else I can think of, except for a touch of hypermobility syndrome. Normal weight (haven't gained over the past few weeks, but haven't lost, either) Healthy diet, recent exercise program (back up to 1/2 hour swimming or on the exercise bike). Regular meditation. Basically, I feel as healthy as I have for years.
*Top medical care which I trust. Logistical and financial access, no worries about getting the care. I went through the chemo/radiation, special protocol, with no problems. (Dartmouth-Hitchcock research shows that doing the chemo and radiation before surgery increases chances that the cancer won't come back) Stent inserted and replaced twice without trouble. The surgeon at DHMC has done over 250 Whipples; when we talked with him at the beginning of this month he'd already done 16 this year. (Success of the procedure is directly correlated with number the surgeon has done) A nurse in his OR said he has a reputation for being meticulous and insisting on total competence from everyone in the OR.
*I can never say it too many times. Support from family, friends, people I don't even know but wish I did. Your good wishes, prayers, thoughts. I feel as though I'm going down some scary rapids, but cradled in your hands.
*Jerry, always in a category of his own.
*Attitude. This is a hard one to talk about, because sometimes I feel as though I'm walking a narrow line between Pollyanna/denial and an honest appreciation of all of the above.

When you look at it closely, it doesn't seem like a fair fight, does it? Now imagine Pancreatic Cancer slinking back to its lair, defeated, while we all cheer and John Williams's music rises in the background.

Great weekend, but back to the real world

In fact, it would be hard to think of a better weekend as we look forward to the next week. We went to our favorite inn in VT, Abbott's Glen: it was peaceful and beautiful, and as usual we were spoiled with delicious food, interesting fellow guests, a great massage, and beautiful weather during the day. Saturday night there was a dramatic thunderstorm which I enjoyed from the comfort of our room, sparing some sympathy for the campers out in the middle of it.
It was a time away from time, but now we're back, and what a moment ago was three weeks is now down to three days. The surgery is on Friday, but Thursday we'll go up to Lebanon in plenty of time for me to do the bowel cleanse (yuck)without having to stop by the side of the highway.
For anyone who doesn't know DH-Lebanon, it's a major teaching hospital connected to Dartmouth College. Here's how it looks from the outside:

From the inside, it looks like a hospital, except that there are several grand pianos scattered around. To Jerry's annoyance they all are locked, but on the other hand, he's going to have plenty of time on Friday. I have faith in him.
I'm busy with my list-making (hand cream, dental floss; check to see if the wifi works on the laptop; borrow the complete Number One Ladies' Detective Agency and the last Harry Potter) and with worrying about Jerry. He asked me rather wistfully if I'd show him how to run the washing machine.
And what will he eat? He's a wonderful cook, but just isn't inspired when he's alone. I guess he could get takeout from the sushi place down the hill, but then I'll worry about his getting scurvy or weird intestinal parasites from all that raw fish.
What it comes down to is that it's easier to worry about him than me.

Cancer and Heart Disease

I've read that cancer has now overtaken heart disease as the leading cause of death in younger people. Of course, the article defined "younger people" as those under 85, which is encouraging to some of us. But up until recently, most of you reading this would have been more likely to die of heart disease than cancer.
So why is cancer so much more frightening? Just look at popular entertainment. Once you're past the testosterone flicks, where people die of car crashes or being blown up in various imaginative ways, it's always cancer, with Alzheimers and AIDS a distant second. In chickbooks or flicks, cancer is the disease of choice to off spunky middle-aged women who might otherwise take over the plot. People only die of heart attacks in books when the author wants to get rid of them quickly.
Do I sound paranoid? Jerry is used to my suddenly screaming obscenities and throwing my book across the room, and just asks with mild interest, "Another one?"
I was talking about this cancer bias with another survivor, and we agreed that part of the reason is that heart attacks are just that: attacks that can come without warning. Boom. "I didn't even know he was sick." We're all aware of heart disease, but we have an illusion of control: we get our cholesterol checked, maybe take statins and low-dose aspirin, try to remember to get some aerobic exercise regularly and we'll probably be okay.
Cancer, on the other hand, sneaks up on you. In the popular medical literature, though thankfully not among my friends, there is a kind of blaming the victim. "Most cancers are due to lifestyle" -- and let me tell you, considering what my lifestyle has been, there are a lot of people out there who by rights ought to be toast by now.
Besides, it takes a long time to get treatment, and the treatments can be costly and nasty, leaving the person bald and sickly-looking. Someone on a treatment regimen for heart disease, on the other hand, loses weight, quits smoking, and quickly starts looking better. Even the surgical options are unfair. A mastectomy is a lot more disfiguring than a by-pass.
So it's no wonder that cancer scares people more than heart disease. It sneaks up and is suddenly in your face. People hearing about it don't quite know what to say.
But once you're in it and have accepted your lot--whatever it is--it's just what is, and you deal with it. Fortunately, I have a dedicated group of friends and relatives to help me. And their support has made the journey,so far, doable.

Things continue well. Recipe.

Saw the oncologist today, and he continues to be upbeat about my status. Among the big, serious questions we had for him was whether I could eat sushi, and he said that my white blood count is so high that there wouldn't be any danger in it, though he had the look on his face as though he wondered why on earth I'd want to. I've only lost half a pound over the past few weeks (more ice cream needed), and the oncologist seems to think that I'm in as good shape as we could ask for going in for the surgery. So Jerry and I are encouraged (not to mention scared shitless at the thought of the surgery, but This is a Good Thing, considering that the prep for the Whipple is like the prep for a colonoscopy).
Leaving those thoughts aside, I am following the advice of a Whipple survivor on one of the pancreatic cancer forums: he said that it's all well and good to eat healthy food as I prepare, but that for the next two weeks I should include all the foods I love, since I'm sure not going to love them for a while post-surgery, and it's good to have good memories.
That being the case, I cooked (and ate some of) a lamb roast for Jerry, Max, and Anya yesterday. Jerry kept wondering why we ever became partial vegetarians and Anya said she loved the sauce. So, this is for Anya:
Mouton Moutarde
Preheat oven to 325

leg of lamb, 3-5 pounds
good mustard
dark brown sugar

Spice mixture:
1/2- 2 t each of ground ginger and cinnamon
1/4- 1/2 t each of nutmeg, ground coriander, ground cardamom
pinch allspice

for basting:
1 - 2 c coffee

for sauce:
2 t cornstarch dissolved in 2 t water
about 1/2 c currant jelly (or grape)

Spread the lamb thickly with first the mustard, then the brown sugar. Mix the spices and sprinkle all over the lamb. Put the pan uncovered in the preheated oven. After about 15 minutes, baste with the coffee, and after that baste every 15 minutes or so with the pan juices. Roast the lamb until it's to your taste (we like it rare, at 135 internal temp, about 30 min/pound).
While it rests, thicken the pan juices with the cornstarch-water mixture, then add the jelly. If you don't have currant jelly and have to use the grape, you might want to add a squirt of lemon juice. Serve the sauce separately.
Recipe adapted from Elsie Lee's Second Easy Gourmet Cookbook, 1968 and probably long out of print.

Getting information

I guess it's my Control Mode reaction, but I need to know as much as possible about what's going to happen. It probably started with all the traveling I did when I was young. As soon as we knew where we were going next, the family began reading travel books and novels set in the place, and finding people from there or who had at least passed through in order to grill them about their experiences. That's how at a very young age I knew about the canals of Holland, the escolas de samba of Rio de Janeiro, and the reforms of Mustafa Kemal Ataturk in Turkey.
It's the same with medical procedures. Jerry says that I just want to know everything so that if the surgeon keels over with a heart attack in the middle of the procedure I can take over and finish up for him. Or maybe it's just that if I know what's going to happen, I have faith that that's what will happen, and everything will go right.
Google Whipple Surgery and you'll get more than you probably want to know about it. Fascinating stuff. They need to get part of the stomach, the affected part of the pancreas, the gall bladder (if it's still there; mine isn't), and part of the duodenum. Then they have to sew everything back together so there are no loose ends.
Today I was lucky enough to talk with a friend who had the Whipple at DH-Lebanon in January. She looks good and apparently feels good, though she said that she'd lost over 20 pounds and was having trouble gaining any back. She told me what to expect after the procedure (a lot of feeling fuzzy and unwilling to move around). She said that I'll be on nothing but IVs for several days, moving up to clear liquids for several more, and finally real food just before I leave the hospital. She warned that I probably won't be able to wear anything around the waist for several weeks because of the incision. She also warned about the various drains and tubes which will still be coming out of me when I come home. And more.
Just seeing her and talking with her was encouraging. Besides, now I have just a little bit more control.

A good time/place to be in

No matter what else is going on, I love this time of year. The strawberries are past, but our blueberries are just about to come on; the question is whether the wild turkeys will leave us any. We're eating lettuce, greens, and summer squash from the garden, and keeping watch on the first tomato as it turns orange and then red. It's hot enough for occasional trips to Stone Pond to lie on the beach and swim. Life doesn't get much better than this.
Besides that, physically I feel completely normal. I can eat about anything I want, though not a lot at a time. Seems like I'm always eating. Jerry does his bit, hovering over me like a mama bird and suggesting ice cream at frequent intervals.
The exercise program, which sounds more strenuous than it really is, is going pretty well (reminder to self: next time you plan swimming, check to see if the pool is actually open before you arrive), and I feel less saggy and withered than I did a couple of weeks ago.
And my hair is growing. I can go out in public without a headwrap now, though I think I look like a cross between a Buddhist monk and my bald uncle, though neither of them would wear earrings.
Speaking of Buddhist monks, my mantra these days is a variation of a Thich Nhat Han one: Breathing in, I smile. Breathing out, I am content. Breathing in, I am here and now. Breathing out, it is wonderful.

Suggestions for the hospital stay?

As part of getting all the ducks lined up for my stay in the hospital, I'd appreciate your suggestions on what to take, what to plan for, what to read, and what to do while I'm there.
Jerry remembers his stay in the hospital after his heart valve surgery as being incredibly boring. The high points were when I played Scrabble with him (well, of course), and a low point was when he listened to "Glitter and be Gay" from Candide and it became an earworm that repeated itself endlessly through a very long night. After that I plan to take nothing but forgettable music along.
But what else? I want something to read that will keep me busy and my mind occupied but that won't challenge me too much (not too many plot twists or characters to keep straight). This is complicated by my being a speed-reader (literally. I once got a job teaching speed reading and went through their training just before the outfit went bankrupt), and even on painkillers I can get through thick books quickly.
But what else? Like taking Miles-the-grandson on a trip, I'd rather have too many toys than lie around whining, "Are we the-e-e-re yet?"

And a quick story from Jerry's surgery: we were in asking the last pre-op questions, and Jerry said, "So, doctor, how soon afterwards will I be able to -- "
He paused, the doctor looked over at me with a knowing smile, and Jerry continued, "Play the bassoon?"
Without missing a beat the doctor said, "Two weeks." But after the surgery, during rounds when all the residents follow the doctor in they'd check their notes and instead of identifying him as "the valve job" they'd mutter to each other, "Oh, yes, the bassoon player."

Jerry's therapy

The caregiver has a harder job than the givee's. When I think of everything that Jerry puts up with and does, I feel sorry for all of you who didn't have the luck to marry the most wonderful man in the world -- hey, guys, I got him, too bad for you.
And I know he didn't expect "caregiver" to be in the job description when he signed up.
This is a man who is phobic about doctors, can't stand hospitals, and who almost literally faints at the sight of blood. This is a man who hates to lose control. And this is the man who takes me to the ER at 3:00 am, who managed to live with my nausea and vomiting, who is prepared to deal with my weakness, wounds, and drains -- and all of this without falling apart.
He'd tell you the solution is single-malt scotch. However, his solutions are basically much more creative than that. One of his latest ways of dealing with stress is to smash big pieces of glass into little ones and stick them back together. Like this.

He just finished it yesterday and hung it in the window over our front door. That required schlepping it single-handedly up a ladder to the second floor and managing to hang it from two hooks.
Next? Either a reproduction of the Rose Window from Notre Dame or maybe an Elvis with black background....

In training

Now that I've recovered from last week and feel good again, I've decided to treat the next three and a half weeks as though I'm in training for my own mini-Olympics. The surgeon said that the best thing I could do was to get in as good shape physically as possible. Even without the major surgery, just lying in bed wastes muscle mass and makes recovery harder.
Therefore, besides the extra protein, I've committed to doing at least some exercise every day, which is a lot easier to do now that I'm not having any treatments. I started yesterday by going to the Y to swim. Fifteen minutes of laps and I was worn out -- I was doing half an hour easily back when I was swimming regularly. I plan to alternate swimming with weights every other day.
I'm also doing a bit of a walk with Jerry in the mornings, though I still need to get my brace adjusted so it doesn't hurt with every step. For years, walking was my exercise of choice, so it would be wonderful to be able to do it again.
And every evening (okay, two evenings so far) I'm doing a yoga/pilates combination for about fifteen-twenty minutes.
Today I'm going to add a few minutes of pranayama (yoga breathing) every day so that my lungs will deal with the anaesthesia better.
Doesn't this sound dedicated? The only reason I'm writing it down is because now I won't be able to skip a day or two when I get lazy or bored, because... you know about it. You'll keep me honest in spite of myself!

Surgery date: August 1, 2008

We met with the surgeon this morning, and basically what he said was that the CAT scan can't tell him everything, but that the tumor has shrunk enough that he feels it is worth going ahead with the surgery.
Unfortunately, one of the things the CAT scan can't tell is whether the major blood vessels have tumor or scar tissue around them, and he won't know that until he gets in. If it's tumor he closes me back up and we're back to Option B or C, probably C. If it's scar tissue, that's the best possible outcome. But all of the things that have been in my favor all along -- general state of health, tolerating the treatments so far this well, my (relatively) young age -- are still in my favor. He even said the word "cure" once.
He said that there's a window of opportunity for the surgery. Too soon after radiation, and the swelling etc. from the radiation can make it difficult. Too late and the radiated tissue gets fibrous and hard to work with. August 1st is right in the middle of the window. He got out his datebook and wrote me in. Because the surgery takes about 7 hours, that's all he's going to do that day. I'll be in the hospital for 7-10 days and go home with a couple of tubes coming out of my guts, one of them for feeding me through if necessary. (This was the point at which Jerry turned green.)
So how do I feel? I think the tiny part of me that still believes in the tooth fairy hoped that he'd say, "Cancer? Whatever made you think you had cancer? You're fine, and you certainly don't need surgery." But then, there was the 3:00 am part of me that couldn't have imagined this good news.
It's like coming up after trying to swim the whole length of the pool underwater and taking that deep, almost painful breath. Sudden new possibilities open up.

Tomorrow. Option A? Option B? OptionC?

Tomorrow morning is what we've been working towards since the chemo began in March. At 8:00 we'll be at DH Lebanon, where I'll have yet another CAT scan, followed immediately by a meeting with the surgeon. Presumably, he'll be able to tell us just what has happened to the pancreas and whether the Whipple Procedure will be possible. In February, when we first met with the surgeon, he said that while the cancer was localized (ie hadn't metastasized to other organs) it was touching two of the major blood vessels in the area and was at the time inoperable.
What I heard last week was that the chemo and radiation had shrunk the tumor greatly, but I didn't get any info on the blood vessels. Other good news was that, as Jerry reported, the C19 markers in my blood had gone way down. My local oncologist keeps smiling when he sees me, which I take as a very good sign. But we don't know yet.
So here are the options as I see them at the moment. Option A is that the Whipple is possible and will be able to get everything. As I understand it, the surgery would happen within a few weeks. They want me to be recovered from the chemo and radiation as much as possible without losing the advantage of having had them. Also, I'm building my strength up as much as possible (whey protein and yogurt smoothies are definitely the way to go), and Jerry is gently encouraging me to take walks every day.
Option B is the worst. In that one, the surgeon would say that the cancer is not only still inoperable but has spread, and I should go home and make sure my affairs are in order. This option seems impossible to me, except at 3:00 am, and I'm taking pills to make sure I'm not awake at 3:00 am. (Our mantra is: get through this and deal with the addictions later.)
I hadn't become aware of Option C until recently. In this one, surgery might or might not happen but in any case wouldn't solve the problem completely. The challenge would be to keep the cancer at bay as long as possible while keeping quality of life as good as possible. Cancer in that case becomes a serious chronic illness, but not something immediately life-threatening. We have a neighbor with another type of cancer who has survived for seven years so far, with ups and downs, changes in types, amounts, and timing of chemo, and times of feeling fine or others of feeling low. He continues gardening, playing golf, and making wine, and he and his wife have taken several trips over the years. I talked with him recently while we were both getting chemo, and he said that generally life is good, though the present chemo seems not to be working as well as it had. But there are still three other types he hasn't tried, and more on the horizon.
Where does that leave me? Generally optimistic, though I crashed the other day for a while. All I could think of was how much I love my life and how wonderful it has been up till now. There is nothing more I could want -- except for it to continue as it has.

Back in Action

It's good to be back, and thanks to both Jerry for keeping everyone posted on what was going on and to you for good wishes and thoughts.

It's been two and a half days of disconnect. I've slept at odd hours and not been able to sleep at other odd hours. I've had all those clear liquids (plus the saline IV) which meant a lot of getting up to pee, which meant unplugging the IV and schlepping it across the room into the bathroom and back. By the time I got back, all the lines and wires had twisted themselves into an intricate lace pattern; lucky I'm a knitter, because I was able to frog it all back to where it belonged.

Part of the disconnect is that no one could be nicer than hospital personnel, but they're working in a hospital. I met so many helpful, caring, patient, friendly people, though they had a tendency to go off duty just when I was getting to know them, to be replaced by other equally wonderful people.

But a hospital itself reminds me of nothing so much as a nineteenth-century New England millworks just before the assembly line and efficiency took over. You wait, no one is quite sure why, and then, eventually there is a kaKLUNK and something happens. Then it's all repeated.

Sometimes it works in your favor. They were concerned enough about my insides to move the ERCP (=Endoscopic Retrograde Cholangiopancreatography, whatever that means) forward two days. I was told it would be on Tuesday at noon, but they came for me at 7:15, fitting me in ahead of everyone else instead of after. As Jerry said in the last post, the procedure went smoothly and they put in a new stent. The doctor explained that stents are usually good for three months, so I got a month and a half extra out of the last one. If I have the Whipple I won't get another stent (no place to put it), but if the Whipple isn't possible I'll need the stent replaced in three months.

Afterwards I had a bizarre experience. Apparently Jerry came in to visit and stayed for about an hour and we had a good chat. I can't remember anything of it. He says I was just as coherent as usual, which is scary. At least I guess I didn't tell him about all those cute cabana boys I have on the side.

I also had a nice chat with a doctor, and when she came in yesterday to follow up I didn't feel right about telling her I couldn't even remember her face. It seems that I expressed concern to her about diet, because yesterday she kept recommending that I drink Ensure or Carnation Instant Breakfast between meals to increase my protein consumption.

Getting out of the hospital was a kaKLUNK. At 8:15 they said I could leave as soon as the paperwork etc. was done, but it took another three hours. On the way home yesterday we bought some of the healthy drink stuff, and let me tell you, pig slop doesn't even come close to describing it.

A request to all -- please, please send me or post your favorite high-protein smoothie drink recipes. The only way that the stuff I bought could be made palateable is by adding equal parts of amaretto, and I don't think that's what the doctor had in mind.

Me Again

Jerry reporting again. Lucie had her ERCP early this morning and all went well. Even so, they decided to keep her one more night, since she came in with a fever and fevers are more dangerous with people who have an immune system reduced by several weeks of chemotherapy.

When I visited her this evening she was in good spirits and looked good. Her only complaint was that she was limited to clear liquids for the rest of today. Her supper revealed that she had eaten the wonderful clear broth, but not the wonderful Jello. And unfortunately was prohibited from touching the chocolate I smuggled in, which made her wonder if life really was worth living. Hopefully she'll get a solid breakfast, which will taste good, even for hospital food.

Thanks so much for your comments of support, first to Lucie, for whom they mean so much, and to me also, for my stumbling efforts to fill in in her absence.