Friday, March 19, 2010
"This, too, shall pass" is right up there with, "Trials are what help us grow as human beings" as things that we know are true, yet are so hard to remember when we're in the midst of it
Looking back over half a century of bone-headed moves, pure rotten luck, and the ineffable tragedy of losing people I loved, I can honestly say that I wouldn't have skipped a single one of them because I *did* grow, and grow straighter and stronger, because of each of these "oddly right" endings. But going through some of them was unmitigated hell.
I used to wish I had a Tomorrow Button, a button I could push to make the current day and its challenges disappear into the past. Now, though, I realize that not only would I be about 104 by now (deferred gratification never being my long suit, that button would have gotten a righteous workout) but I would still be essentially the same person I was at 20.
I was a whole lot better looking then - skinny, lots of hair, gorgeous skin - but I was also self-involved, greedy, short-sighted, reckless and more than a little crazy. (Now that i think about it, those last two may still obtain.) Thirty-odd - some of them very odd *rim shot* - years later, I've gotten my share of mental and emotional scars, but those scars have etched out a person I never would have suspected was possible. Not that I'm wonderful and perfect and all that silly stuff, but I realized that I've learned compassion for others and a willingness to share - stuff, money, strength, ideas, whatever.
When I was 20, I had so much going for me - all the temporal, worldly stuff was going great guns - but I was miserable. Now I have a heckuva lot less in many areas, and a few hefty challenges to lug around daily, but I'm (dare I say it?) *happy*. Both my girls came home to enjoy my birthday with me the other day and although neither one shopped for me (one because of school, the other because of finances) I didn't feel the least little bit overlooked or shorted. All I wanted was my family, and I got that gift.
And I listen for the gentle whoosh of angel wings and I hear them, and they comfort me.
Oh, and yesterday's closing line, "It's all in the playing" is the title of a book by Shirley MacLaine. Should have attributed it. My bad.
Thursday, March 18, 2010
Tears and laughter.
Two years ago, my mother was dying. I lived with her through the end. All the following year was a nightmare of two houses - both under construction - probate, both daughters off to college, husband with failing health, bank accounts with failing economy.
Then one day, it was all over. I was over losing my mother (as much as one ever is.) The daughters were happy at their respective colleges, and I was (sort of) over the upset of having them move out. The husband was apparently healthy. The estate was settled. The construction was over. (The bank account hadn't recovered, but at least it had stopped losing money.)
Then things slowly, slowly started heading downhill again, gathering momentum. The roof started leaking in mysterious places. We had six (*six*) cars on the insurance policy, and not a one of them was roadworthy. Barn tried to fall down. We began positively hemorrhaging money. And husband took a major turn for the worse and was apparently beyond medical help.
But now, after much maneuvering, husband is properly diagnosed and is once again on the mend. One daughter is graduating this year and will be moving back home (just in case I had plans for her room...) for a year before grad school. My mother's house is being rented out and will bring us a nice steady income.
I realize that the tides will likely turn again some day... good times will fall into a slump, bad ones crawl out of the ditch... but sometimes I wonder if it's all in my approach. Are the good times *really* so different from the bad? Sure, some of the markers - health, finances - are up and/or down, but maybe the rest is "good" or "bad" because of how I squint my eyes when I look at it.
I read an interesting thing the other day - a rating of the fifty states in terms of the happiness of the inhabitants. The state with the highest happiness rating was Louisiana, she of the Katrina devastation, low per capita income and general bad doings. (This was before the Saints SuperBowl win, too.) Makes you wonder if money, houses, even jobs are all that important in the long run. A friend of mine was in New Orleans a year or so ago and returned to tell me that, "Those people still don't have nothin'." Yet they're *happy*.
Maybe it really is all in the playing.
Friday, March 12, 2010
This has been going around in my head for some time now - let me know what you guys think.
When my husband was first diagnosed with hepatitis, our family doctor decided she was out of her depth and sent him to a gastroenterologist. He's asymptomatic, so when the gastroenterologist (henceforth known as Dr. B) offers him a two year drug protocol with heavy-duty side effects and a poor chance of success, he passes on it.
Husband also had small raised dots on his shins and arms - doctor (not Dr. B, but another gastroenterologist in his group) said that he didn't know what it was exactly, but he guaranteed that it wasn't connected with the hepatitis.
His hepatitis starts to catch up to him last summer - he has a major weight loss, massive fatigue, slightly jaundiced, the whole deal. Back we go to Dr. B, who says (and this is close to a direct quote), "I could have cured you five years ago, but I can't cure you now. The most we can do for you is try to manage your symptoms." Dr. B then gave him 4-6 months to live and sent us home. (Please note the language here - not "you could have been cured", but "*I* could have cured you.")
A month or two later (after a couple of nasty events involving brief hospitalizations), we go back to Dr. B who offers the same drug protocol as several years ago, but with a reduced dosage of only one of the drugs, explaining that this would hold off further cirrhotic damage and let DH hold on until later this year when some snazzy new drug combo would be available.
Meanwhile, back at the ranch, we have, well, me. I have a history of what I like to think of as social activism - other people have been less complimentary, using terms like "loose cannon." At any rate, I was unwilling to accept the prognosis and through a series of events chronicled here in earlier posts, found a hepatologist (and as many times as I've written that, I still keep writing "herpetologist" ) at Mt Sinai Hospital in NYC. We took the train down there, saw the new doctor (Dr. D) and got an entirely different diagnosis, prognosis, and treatment.
Turns out 1) husband isn't likely to die momnentarily, 2) the new drug won't be available until at least next year (awaiting FDA approval), and 3) the drug treatment recommended by Dr. B would likely have made the cirrhosis *worse* and the virus stronger rather than weaker. Oh, and remember that skin problem? Turns out it's something called lichen planus, and it is 100% associated with hepatitis.
So here's the question: what about all the other people? The ones who don't have a hardhead like me who'll hunt up a specialist, and are lucky enough to have the time and financial wherewithal to drop everything and go to NYC for two days? The ones that are stuck with Dr. B and his friends - after all, he was recommended by the family practitioner and is reputed to be one of the better gastroenterologists in the Syracuse area.
Obviously, this doctor and his buddies should stick to what they know - acid reflux, colonoscopies and the like. (And believe me, I'm not belittling those things.) But why would they present themselves as doctors who not only know the score on liver disease, but know it so well that they can tell someone they'll never see another birthday? Are they so cock-sure of themselves that they don't know what they don't know?
And what about those other people... that's what I keep coming back to. Hepatitis is one of the fastest-growing major health issues in the world, so do those people just go see Dr. B and company, get their poor prognosis and/or drugs of little value, then just go home and die like good patients?
What about those people?
Wednesday, March 10, 2010
I never realized how much of my diet was composed of carbohydrates until I started the South Beach thing. Since my husband pretty much has to do this diet (or Sugar Busters) for health reasons, and since I'm not an enthusiastic cook to begin with, let alone one who would make two separate meals each time, I'm doing it along with him. (Hey, why not? It can only help, right?)
As a mostly-vegetarian, my meat repertoire is somewhat limited, but I'm great with the veggie sides - and I'm learning the meat deal. The thing that surprised me, though, was the realization of how dependent upon grains and starchy vegetables I've become when planning meals. The concept of meat+non-starchy veg was pretty foreign. Spring is coming soon (I hope), and that always makes eating lightly more appealing, too.
DH is shocked at how many vegetables there are besides potatoes, corn and carrots. I've discovered that when it comes to a lot of vegetables, dips and all, a sort of "Don't ask, don't tell" works best. Tonight I made a dip for the crudites that was basically avocado and ricotta, plus garlic, onion and cilantro - he liked it, but we both knew better than to discuss the ingredients, since he "knows" he doesn't like avocado or ricotta!
It's been years since I've been on a diet with planned menus and recipes and the like. I'm pretty excited about this, though, as so many people seem to have such success with lower carb diets.
I don't really miss the sugar (although I did enjoy honey in my tea and on my yogurt...) and it's nice to have a plan - I'm tired of thinking. (Fifteen years ago, I lost 20 lbs on NutriSystem, and that non-thinking was the appeal - just rip open a box, swallow the contents, and get back to what I was doing.) Mostly I miss my evening glass(es) of sherry - I'm such a creature of habit. Guess I'll just have to make some new habits!
Saturday, March 06, 2010
First, a bit of background: my husband of 25 years was diagnosed with hepatitis C about fifteen years ago. (We think he must have contracted it from transfusions following a nasty car accident, back in the days before screening.) He had no symptoms - which is typical - and since there was no good treatment option, he decided to just "keep an eye on things."
That apparently worked well enough until late last summer, when he started to feel very fatigued and unwell. He lost forty pounds in the space of two months, developed encephalopathy (comes from too much ammonia in the blood, a result of poor protein metabolism in the liver, as I understand it), hand tremors and ascites (fluid build-up in the abdomen.) Testing indicated severe cirrhosis. Local gastroenterologist gave him lass than six months to live and nothing to do but "control the symptoms" - lay off the salt. He also offered a reduced dosage of Interferon, in the slim hope of holding off destruction until a new drug became available some time late this year. John should be evaluated for a transplant, but it probably wouldn't do any good even if he could get one.
A kind woman here on the Living with Hepatitis C Team offered a suggestion: she had a relative in a similar situation who had had remarkable success with acupuncture and Chinese herbal medicine. My husband and I are both drawn to alternative stuff anyway, and with virtually nothing to lose, went to a local acupuncturist. She, in turn, contacted Misha Cohen, a woman who is an authority on the use of Chinese medicine in hepatitis C treatment, and we had a long Skype consultation. Cohen gave us a long evaluation and treatment recommendation, and strongly suggested we see a board-certified hepatologist.
(Following a couple weeks of acupuncture and Chinese herbs, for the first time in six months John's complexion has lost its yellow tinge and he feels well enough to do some things. The ascites is under control and the encephalopathy is completely gone.)
So this week, armed with a folder full of test results, we took the train down to NYC to see Dr. Douglas Dieterich (someone Misha Cohen specifically recommended) at Mt. Sinai Hospital. Dr. Dieterich reviewed all the results, gave John an examination, and said that in fact he was *not* in particularly bad condition - yes, he has hepatitis C and ascites and cirrhosis, but there are things he (my husband) can do to help himself.
JOhn has always been a big sweet-eater - candy, cake, ice cream, you name it, if it's got sugar in it, he'll eat it. Apparently this has contributed heavily to non-alcoholic fatty liver disease (NAFLD), which in turn makes the hepatitis C progress more rapidly. Dr. Dieterich said that if John can just eliminate the sugar from his diet (in addition to the salt, for the ascites and edema), he should be able to maintain or improve his condition. Then, when the new drug combination becomes available next year (it's in FDA review now) he can take that and eradicate the virus. With no virus and no fatty liver, even though he has cirrhosis, the remaining "good" liver should be able to regenerate and he should be, if not "good as new", at least able to live a long and full life.
So after spending the last month trying to assimilate the fact that my husband was dying - having just lost my mother, fledged both daughters and had my husband (and myself) retire, this was supposed to be the start of lots of good times, not the end of times altogether. I started mentally eliminating a lot of plans we'd had, and figuring out just how I was going to run the 180 acre organic farm by myself (and the hell with any other plans or projects I'd had in mind.) Wrapping my brain around the concept of losing my husband was just overwhelming.
And now it looks like he's going to be around for a good while after all. He has some Western medicine drugs to take - mostly diuretics - and a host of Chinese herbal preparations and supplements, and he has to change his diet and get some exercise. If he does his part, it looks like he'll be okay. It's like God issued his recall, then changed His mind.
Dr. Dieterich recommended John start the South Beach Diet (or Sugar Busters) to help him avoid sugar, get his 80-100 grams of protein daily and start to rebuild his body a little. As a mostly-vegetarian, this diet - excuse me, Lifestyle - isn't something I was real familiar with, but I had Amazon overnight the book to me and read it last night. Since I basically refuse to cook two meals three times a day (hell, I'm doing real well to cook one!) guess who's going to be doing the South Beach Diet along with him?
At this point, I'm just exhausted - I realized I've been basically holding my breath for a month or two, and organizing my life around my husband losing his. I haven't been able to focus on anything, let alone my own weight loss/fitness /house renovation/book/art projects/etc. and I haven't really slept much. Last night I went to bed at 7:30 and slept until my usual getting-up time of 5:30/6:00 this morning, and I'm still wiped out. It's actually sunny out (rare in Central New York) this weekend, but I may well squander the opportunity to get something done and just rest. Read the South Beach book again. Make some plans (plans for the future that include my husband! Wow!)
Heartfelt thanks to any and all who have offered support along the way here - especially Katrina, who held my hand during two John-is-dying scares - and for anyone facing a similar challenge, the lesson is that, truly, where there's life, there's hope.
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