Back to the medical establishment, again

Now, that is a really unfair title. Before you start thinking of horrible emergencies, I'd better say that we've had three appointments in the last two days, but they were all "normal" -- the kind of upkeep that everyone has. Jerry, complaining every step of the way, went in for tooth cleaning and checkup, and I had my eyes checked and saw the orthopedic doctor about my ankle and brace. It's a relief to do this kind of thing instead of all the major, scary, and/or painful stuff that the medical establishment usually makes me think of. At this rate, I'll even be looking forward to my Pap smear.

Jerry's teeth, as always, are fine. My eyes are aging and my prescription has changed, and the brace, after yet another adjustment, is slightly more comfortable than it was. The orthopedist promised to make it work. I hope.

I had a kind of green banana moment, though, as I tried on frames while I waited to see if the optometrists could fit the new lenses into my old frames.(By the way, did you know you can again get cats-eye frames with diamonds on the corners? They were tempting. My mom wouldn't let me get those for my first pair of glasses, and here, finally, was my chance. I tried them on, but unfortunately my mom was right. Really ugly on me.)

However, here was my predicament. Frames now cost from $150-$400. Considering everything, how much would I pay for new frames? Suppose they were really gorgeous (not the cats-eyes)? What if they came with a life-time guarantee?

Luckily, I can get the new prescription in my old frames, so I don't have to worry about it. And in any case and no matter what my situation, I can't imagine spending top dollar on eyeglass frames.

Unless they had real diamonds.

curcumin dreams

Wikipedia says it best: Curcumin is known for its antitumor, antioxidant, antiarthritic, anti-amyloid and anti-inflammatory properties. , which pretty well takes care of everything. In India there are bandaids with curcumin on them to speed healing, and I've read of curcumin's use in helping rashes and acne. In cancer, it works primarily, as far as anyone knows for sure, by slowing inflammation and speeding apoptosis. The latter is programmed cell death, which is what you want for cancer cells; I always imagine bubble wrap with giant fingers popping it. (What does apoptosis make you think of?)
There are a few problems with curcumin. It isn't absorbed well by the body, so that even with people taking 8 grams/day (and they have my admiration) the amounts showing up in the body aren't large. There's some slight evidence that mixing it with liquid, especially fats, helps the bioabsorption. I think of hundreds of generations of East Asian women frying up the spices in ghee as they cook dinner and sigh at modern science, which wants everything encapsulated and measurable.
The other slight problem is that even when it's absorbed it doesn't necessarily work, which puts it in with most other pancreatic cancer treatments. But it's worth a try, and it's fun to play with.
On the other hand, both the hundreds of generations of East Asians (and Moroccans, and Catalans) who've eaten turmeric regularly with no problems as well as those volunteers who ate the 8 grams a day have shown that it has as few side effects as anything else.
What this means for me is that I went to the Vitality Shop, our most knowledgeable source for alternative and complementary supplements. Susan suggested a two-pronged approach: supplements of almost pure curcumin plus adding turmeric to everything possible, on the basis that the other stuff in turmeric might either be what works or help what works do better. Luckily we like Indian food. Recipes will follow as I find some good ones.
In the mean time, I can tell you that you can sneak 1/2 t of turmeric into a smoothie, but any more than that and you'll understand just why there aren't any recipes for strawberries in turmeric sauce out there.

Family Time

A lot to celebrate yesterday -- Luther's 60th birthday (how can my little brother be 60? And isn't he lucky that I can't find a baby picture of him to post here and embarrass him?), Anya's new job, and most of all, the weather, which finally decided to remind us of what summer is really like.
We met at The Marina, a restaurant right on a branch of the Connecticut River just over the border in VT for lunch and a chance for Miles to throw stones into the water.
It's wonderful to have so much of my family so close, but a time like this makes us miss Cinda and Rob even more.

Are you very angry?

That's the first question a friend asked me when I told her the news. It stopped me cold and I had to think about it.

I don't think of myself as an angry person. I get upset, pissed off, and annoyed; and I can go into tirades against certain of our politicians and people who let modifiers dangle, but I don't usually suffer from road (or any other kind of) rage.

Thinking of my specific situation, though, it seems to me that there are two kinds of anger that might be appropriate. First, there's the two-year-old temper tantrum in which I'll lie on the floor kicking my heels and holding my breath until I turn blue in the face and THEN you'll do what I say. It's using my helplessness and frustration to try and change things. And believe me, if I thought it would work, I'd try it. But I'm not really the lie-on-the-floor etc. kind of person.

Then there's a kind of dull, burning resentment based on the feeling that life isn't fair.
I know it isn't fair. I've had a blessed life -- a childhood and youth filled with interesting people and places, brought up in a loving family whose attitude, when the water went off and there was a cholera epidemic and the government was about to fall, was to prepare for everything and make jokes.
I had the brains and means to fulfill my educational dreams, and have had a career I loved -- and was able to retire before even that perfect career burned me out.
Most of all, I've had 41 years (anniversary on September 3) in the most wonderful marriage I could have wished for. I daydreamed when I was a teenager of ending up in a big New England farmhouse on a hill, working and writing with a husband who continued to surprise and delight me through my life. Daydreams really can come true.
Add to that two children who have also constantly surprised and delighted me, who have all the characteristics I dreamed my children would have but have gone far beyond my dreams, and who then had the amazing talent and taste to choose equally wonderful spouses.

I'm not saying that this cancer balances things out, and that cosmically the scales are now even. I would have been perfectly happy to have my unfair advantages continue, and wouldn't have complained a bit if they had. But a dull burning resentment seems even more wasteful of the time I have left than a temper tantrum would be.

Coming to terms with everything

That's a misleading title because I've learned that a) you don't come to terms permanently with anything and b) you certainly don't come to terms with everything.
But I spent a lot of yesterday trying, thinking about the implications of being in Option C.
Right now, except for residual pangs from the surgery and no muscle tone, I feel well. The Y is closed this week, but I plan to start going back next week (I'll even be able to swim by then), and the week after that Yoga starts up again. Jerry points out I need these activities to keep me from spending my time obssessing, and he's right. Besides, just because one part of me has cancer doesn't mean the rest gets to slack off.
I also want to start playing trombone again, with the hope of joining the Christmas rehearsals and concerts, or at least doing what I can.
Part of the coming to terms is that I don't know what it's reasonable to expect to be able to do -- but if I don't try it I certainly won't be able to do any of it. At the same time, I don't now have the endurance to do as much as I could even a month ago.
And I've just noticed that something that was going to be a kind of philosophical post has morphed into an activity program. Maybe tomorrow I can work on that. It's a lot harder to admit to occasional despair than to plan to exercise.

Meeting with Oncologist

We met with the oncologist this noon, and didn't get any big surprises. During the surgery, not only did the surgeon spend an hour sorting through my guts to see how big the tumor was and what it attached to but he called in a vascular surgeon specifically to check out the hepatic blood vessels. The vascular surgeon was the one who said that it was inoperable. I guess it's better to know for sure.

The plan at the moment is for me to go back on Gemcitabine, the chemo that I was on before, and to have it every week for three weeks and then one week off. In a way, this is good news, because I tolerate Gemcitabine well and it seems to work well for me.

Jerry and I ran the other possibilities past him, mostly cyberknife and curcumin. He pointed out that cyberknife wouldn't work if the tumor was entwined with the blood vessels any more than a scalpel would; but he accepted my adding curcumin to my regimen, though he had a rather bemused expression on his face. I don't think he runs across exotic Indian spices too often.

We came back and went up to Stone Pond for a while. It was therapeutic.

Waiting around to see what's next

Anyone with something like this going on will tell you that the times in between are the hardest: between diagnosis and testing, between the tests and the results, and between the results and the plan. I'm back in the last category now, waiting to see what we do next (and what the options are after that, and after that).
The internet and friends have lots of suggestions, everything from new cutting-edge technology through mental imagery to coffee enemas. All of these have actually been funded as studies, though there is nothing that cures this form of cancer and very little that seems to slow it down. I got excited reading about the "cyberknife" which is used in several highly-regarded hospitals, but the latest I read on it http/apps.pathology.jhu.edu/blogs/pancreas/ (from Johns Hopkins) suggested that it has promise but isn't quite ready for prime time yet. A friend told me about a study using radio waves rather than radiation; there is a list of surgeons circulating on the net who specialize in Whipples with vein involvement; Johns Hopkins is studying a program of vaccinating people post-Whipple with something or other that is supposed to help, but the problem with all of these is that the results are spotty. You notice I'm not even getting into the coffee enemas. Waste of good coffee.
The latest one I'm checking out to run by the oncologist on Monday uses high doses of curcumin, the stuff that turns turmeric yellow. A study that came out last month suggested that at least it isn't harmful and may help -- but my homework this weekend is to find out a few stats about it. Like does it seem to make any difference?

A bit of housekeeping and catch up -- nothing earthshaking

First of all, if you've read the responses, you'll note that on August 8th someone named Justin Guild at Purdue U. wants to link us to a survey on the use of blogs and internet on communication during major illness. I don't endorse it, but I don't decry it either. I took the survey and it seems innocuous and maybe helpful. You know that I'm in favor of education, communication, and blogs, so if you have a bit of time, go over to his survey and take it. You can find the link on his post.

Also, I got linked to the site of a friend of Max and Anya's. Dave is spending a year of not throwing anything out. His basement is going to look like my parents', though they weren't so organized about never throwing anything away. I went over to his site to see what he had to say about me (thanks, Dave) and got fascinated by his project. http://365daysoftrash.blogspot.com is the url. This is one that is going to get even more interesting as the 365 days go on. Check it out. (Side note: do you realize how much they use once and then throw out in a hospital? My carbon footprint is probably the size of Luxembourg's by now.)
Otherwise, I'm still working on healing from the surgery, and I can only imagine what it would have been like if they'd actually removed stuff. People who've been through it promise me that I'll be able to do everything I could before, and maybe even sooner than I expect. But I expected yesterday.

On a more serious note

It's a lot easier for me to make jokes and think of my blessings than to sit down and try to come to terms with what this past week has meant for the future. I didn't want to try it while I was still physically in bad shape, but because today I can now get up off the couch without Jerry's help (getting off the couch requires a kind of swivveling motion that is hard on the abdomen), I think I'm up for it.

Part of the problem is that I've always assumed that I'd live a very long life. One grandmother lived to her late eighties, the other to her late nineties, and while my grandfather only lived to about eighty and the other disappeared young after a family scandal, I figured I took after the women. My mother lived to 88, and my father, breaking tradition, to 90. My lifestyle has been so much healthier than theirs that I just assumed that I would live well towards a hundred.

Looks like it won't happen, so part of what I'm trying to get used to is that sooner or later I'm going to see the end of the foreseeable future. I have to get used to a shortened time frame. This is very hard.

But meanwhile, I think, was there anything that I wanted or really expected to accomplish in the next few years, however long they might be? Are there any spiritual insights I'd be looking for? Any skills that I wish I had acquired that, perhaps, there's still time for? If I really had those twenty years more, would I do anything more than I've been doing up till now, that is, living my life with as much joy, warmth, and grace as I can manage from one day to the next? Probably not. I've always been a project person rather than a product person. I like making things and doing things much more than showing off the results. What I want to accomplish in however long I have is just to keep working on things, and if I die with a bunch of half-finished projects, that's probably the way I'd want to go.

One thing I'm sure of is that in whatever time there is, there is always time enough for wonderful surprises. I had a high school exchange student who explained to me very seriously that he could see no reason to live past 30, because of course there was no sex after 30, and so what was the point? I saw a teachable moment there, but let it pass.

Sure takes a lot out of you (though not as much as we hoped)

On the one hand, what have I done for the past week besides lie on my back while other people checked my nutritional and other status? They swept around me, checked my vital signs at all hours, gave me heparin shots to keep my blood from clotting, and kept asking if there was anything they could get me. Empty question: you think they were really willing to bring me a full dinner, let alone the cup of coffee I tried to get out of them?
On the other, I have the scar and bruising to show that I really have been through the mill. The scar bisects my belly button (there are innies and outies and splitties?) and is still decorated with bits of tape which somehow seem rather casual to be holding me together. (I'm reminded of one of Dick Brown's parody songs: You gotta have skin, just to hold your insides in....)The bruising is pretty impressive. Apparently once they made the incision they pulled everything out to both sides to get at what they were looking at. I looked in the mirror yesterday and had this epiphany: I was fileted. I'll never look at a trout in the same way again.
So I'm spending most of my time lying down, though now I can lie on my side without getting tangled in the tubes and wires, with both cats keeping me company. I listen to the radio or read. I can eat anything I want, so the past two nights we've been eating mostly from the garden, and I delight in the tastes and textures of food. Now, for a bit, it's mostly a matter of deciding where the dividing line is between sloth and overdoing it.

It's good to be home -- Lucie again

Yesterday morning at this time I was eating strawberry jello and feeling down because I thought I'd have at least another day there. I was so proud to have finally passed the fart test, but the intern said I also had to prove I could keep clear liquids and then solids down in order to get out of the hospital. Luckily for my sanity, the surgeon came around and said he couldn't see any reason I had to stay there. So after the usual hospital hurry up and wait (kaKLUNK) Jerry brought me back in the afternoon.

To sum things up briefly: as Max and Jerry have said, when the surgeon opened me up he discovered that the tumor was too wrapped around the major vein attached to the liver to take it out. He brought my case up to the Tumor Board, which agreed that what I have in my favor is that the tumor is smaller because of the chemo/radiation and localized with no metasteses, and that I am in good health otherwise. A kind of maintenance plan (Option C)with lots of checking in and a chemo regimen seems to be the best bet, at least for now. In any case, they won't do anything until I'm recovered from the surgery. I have appointments set up with the local oncologist and the surgeon in a few weeks, and of course will keep you posted.

Jerry brought the blog entries and your comments up to me every day. I can't tell you how much I appreciate the thoughts and posts. In the hospital you get pushed into thinking of yourself as a patient, and your posts reminded me that I was really a person, not just a passive recipient of professional care.

I also really appreciate Max's and Jerry's keeping the blog going for the past week and keeping everyone up to date. I'm getting a bit weepy now, just from thankfulness for their work, support, and humor.

Which brings me to my special thanks to Jerry for all those hour-and-a-half each way drives to sit with me and for his unfailing faith and patience.

Lord, it's good to be home!

Rainy Day Musings

Jerry again. Be patient, Lucie is getting better each day and may be sprung from the hospital tomorrow, we hope. She is now freed of tubes and is starting to eat--clear liquids, if you can call that eating. And instant coffee and Jello, at that. Yechh.
Having had a commute to my work of about ten feet for the past 18 years (the distance from the bedroom to my studio), I have now been ----into the world of long commutes, with daily trips between our home in Southwestern New Hampshire and the hospital in Lebanon, NH, about 75 miles. Fortunately, most of it is along I91, a very scenic drive north through Vermont, with the Connecticut River to my right and the Green Mountains on the left. Actually, they are very green--made even more so this summer because of the persistent rains--but more like green hills to this Utah-born boy.
Even surrounded by this beauty (I think occasionally of the poor dudes whose commutes are mostly through urban traffic logjams), the first few trips seemed long. But they seem shorter each time now. I think your mind goes into another gear or something. I listen to Vermont Public Radio's classical music station most of the time, except when I'm in peril of dozing off, then I turn to NPR for the latest world news, always guaranteed to wake me up.
When I talked with Lucie by phone this morning, she said I wouldn't need to come up today, it being very rainy and all. I said I would come, as staying home wouldn't affect the rains. Besides, I can look forward to getting hot in the sauna and cooling off in the rain when I get back this afternoon.

Update from Jerry

While Lucie is recovering from the abdominal surgery at Dartmouth-Hitchcock Hospital in Lebanon, NH, she has gained insight into torture methods that might benefit the government. To wit, she says knowing what she now knows about the aftermath, she would have gladly confessed to flying the two planes into the towers, helping Oswald reload, or telling the whereabouts of Jimmy Hoffa. No need to use waterboarding and other sissy stuff.

Seriously, though, notwithstanding the tubes spilling out of every orifice, she looks good and is generally in pretty good spirits. Probably be in the hospital until the end of the week. She thanks you all immensely for your kind thoughts and encouragement through a tough struggle. Same goes for me. Keep 'em coming. Jerry

Lucie says:

I spoke with Mom this afternoon and she wanted me to thank everyone who has commented for their kind words. She (we) really appreciate your thoughts, prayers and sentiments. While the general feeling around the family is pretty down, I do think it's worth posting a quip Mom made this afternoon. She told me that one sign of her being ready to be released is when she can fart again. To me, that's her folks shining through - Grandpa was great at being able to provide a little humor when he was stuck in the hospital.

We're going up tomorrow for a visit, and I'm sure Miles will be able to coach her on a good fart or two.

a picture

This is from two weekends ago, from a family visit to the pond near my parents' house. It is one of my favorite pictures of them together.

An update

I just received word that the surgery wasn't a success. They weren't able to remove the tumor - it's just too tied up with everything else. I really wanted to have this post be sunny and positive, but I'm not sure what else to write here. I think my Dad said it best when I spoke with him, that it's not the end of the road.

Fingers crossed

Good morning, family, friends and readers. I'm Max, Lucie's son, filling in for a few days until Mom is back on her feet (or, at least, propped up with a laptop in front of her). Today is The Day. The day in which the fine surgeon(s) at Dartmouth take over from where the chemo, radiation and Mom's tremendous fighting spirit leave off (well, I'm sure her fighting spirit is still working even while she is being operated on). Hopefully, the team in Mom's corner will knock Mr. Evil Cancer out of the ring. I'm sure if you are reading this you are already sending thoughts, prayers, well wishes and anything else that you've found to help move mountains. Keep 'em coming!

I spoke with Dad a few minutes ago and Mom has been admitted to the Pre-Op, after an hour-and-a-half delay. It is going to be a long day of waiting.

Eat a banana and think of Mom. Thank you.