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.

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?

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.

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....

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?

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.

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.

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.