Wednesday, September 22, 2010
It continually amazes me: the outpouring of love and support from virtual strangers, the prayers said, the candles lit, the positive energy sent. It is absolutely overwhelming, and I believe I owe a lot of my ability to hold up here to you guys and your faith.
Thank you, from the bottom of my black little heart, and God/dess bless each one of you for your help in this time of trouble. Don't ever think you can't do anything to help - just being there is an amazing source of strength for people who have just about run out of their own.
ANd on a practical note, I've discovered that when actual in-the-flesh friends say, "Just tell me what I can do to help", you can do just that! I was so consumed with worry over fire wood (winter's coming, and soon, up here), hay in the barn and crops in the fields, repairs that absolutely positively have to be done ASAP. I turned to my local best friend and the best politician/delegator I ever knew, and suddenly everything is taken care of. Amish people are cutting wood in exchange for leftover hay. A handyman is doing handyman stuff because he owes the friend money (no charge to me.) Food is showing up. A half dozen warm brown eggs. A big bowl of beets and potatoes. I could (and do) cry.
I don't remember it ever being like this in the city. It's my impression, right or wrong, that country people pretty much leave one another alone unless you need them, then they're there in force. Once again, God/dess bless each and every one of them.
For what it's worth, John hasn't looked and felt this good in a while - certainly before he was taken off to the hospital. Tonight I fed him a local free-range, no antibiotic etc chicken, stewed in Chinese herbs, in a white sauce with local peas over some nice brown rice. You can feel then nourishment - above and beyond the vitamin and nutrient counts - in every bite.
Meanwhile, I'm pursuing the "second opinion" deal at Mt Sinai in Manhattan, full bore. Probably Friday, by next Wednesday at the latest, he'll have a complete new work-up by one of the best hepatic oncologists in the country, if not the world.
I am so blessed.
Monday, September 20, 2010
The "inoperable tumor" that made him a non-candidate for a liver transplant appeared virtually out of nowhere. In fact, it appeared following a request for an MRi on a Friday that wasn't fulfilled until the following Tuesday. Reason? Radiology had it listed as already having been done that Saturday morning.
I'm the last person to be a Conspiracy Theorist or anything, but I do know that people make errors. So I sent this whole package of information off to my favorite doctor, the one at Mt Sinai, and he said, essentially, "Hmph. Give me a minute" Five minutes later I got an email from another guy at Mt Sinai who is apparently the top liver cancer doctor in the US, bar none, and he offered to review the case for me if I could get him the CDs with the CT scan with contrast. Rather than send the most current ones (that I have doubts about) I sent the ones from two weeks ago, at our original hospital. He should have them tomorrow and by this time tomorrow night, we should know a)if my husband has liver cancer and b)if there's anything to be done about it.
Is this a bereft woman grasping at straws? Maybe, sure. My husband is my soul mate, and we've had thirty years together. I love him well beyond reason. Yes, I will survive without him if I must, and I"ll do a fine job of it, but I'll be damned if I'm going to lose him to a clerical error.
Tune in tomorrow.....
Friday, September 17, 2010
SO, it seems that after all this poking, prodding, perforating and peering into every square inch of the poor man, my husband is not a candidate for transplant after all. We've been in one hospital or another for two weeks now, and finally they're sending him home. He could live a couple months, a couple weeks, a couple hours. Whatever. We're going home.
I have no idea when or even if I"ll be able to face the loving community here. I hope I can bring myself to be back - if I do, it'll probably be under a different name. I don't know anything right now except that I'm grateful for all you guys have given me. And I don't have any intention of using this as an excuse to either drink myself into oblivion or eat my way into a new size range (unless its smaller.) I do know I have to take care of myself, and I intend to do that. As soon as I figure out how.
Many, many blessings.
Thursday, September 09, 2010
John is in the solid organ transplant (did you know that kidneys and livers are considered "solid", but hearts aren't? Neither did I.) unit at the hospital. He's been visited by representatives of many departments - social work, psychiatry, financial counselors, nutritionists (special nutritionists for liver transplant folks, not just a regular dietician), and anyone else you can think of - and had every imaginable test, had every body part peered into and prodded. He's had fluids taken out, and fluids put in. And we still don't have any definitive answers.
I guess that's not quite fair. The way it works is that all these folks record all of their impressions and those, along with the various test results, are discussed on Friday when The Transplant Committee meets. They will decide whether or not he should be officially listed for a transplant (he almost certainly will be.) Liver transplant candidates are given something called a MELD score (Model for End-stage Liver Disease) ranging from 6 (less ill) to 40 (gravely ill), obtained from a particular combination of lab results - his is a 29, middlin' tending towards bad. The MELD score is what determines how near the top of the transplant list a particular patient is, and to some degree, what sort of transplants may be considered.
But all that comes later. First he has to be officially listed - until that happens, there can be no discussion of possible outcomes. So he gets tested, and I get an education in the mysterious ways of Medicare and its "doughnut holes", Supplemental insurance plans A through F, Medicare Part D, high protein/high calorie diets (which has unfortunate implications for my own diet progress) and a host of other things I was perfectly happy not knowing about.
I've been holed up in a local Inn and Conference Center. Yesterday I asked them to find me a mini-refrig and a microwave, and today I went out and stocked up on microwaveable food, so now it's got all the comforts of home - more, even, since at home no one comes in and makes my bed. I loaded up on library books before I came out here, so I can entertain myself - and now I've caught up with the Kardashians and their trials and tribulations, too.
I keep wanting to make lists and plans and all that sort of thing - organize both my life and my future as best I can - but I've found that after sitting in the hospital for eight hours a day, plus or minus, I'm pretty much brain dead. (We won't talk about taking a full-size pick-up truck with an 8' bed through the circular parking garage - I'm seriously considering an epitaph that goes something like: she was flawed, yes, but my God that woman could park!)
Thank you so much for all your kind words, suggestions and support. I am continually surprised at what a loving, supportive community this is, and am eternally grateful.
Sunday, September 05, 2010
First of all, thank you, thank you! for all your kind words and support. I'm amazed at the strength I can draw from knowing you guys are out there - I really had no idea of the power of community.
As it turned out, they didn't send him home the other day. They kept him over night one more night, and he was transferred to the transplant center - by ambulance, and I met them there with my own vehicle - early Friday evening. Since it's the weekend, they're not doing much besides getting him stable and in the best condition they can, and doing some preliminary testing. The main screening, typing, and evaluating will be done Monday or Tuesday when the regular staff is in.
After a brief kerfluffle over room availability - it's college weekend - I'm staying in a nice hotel/motel/inn/conference center about six miles away, getting the hospital visitor rate ($40/day) with all kinds of discounts and a shuttle service. Being the good Scotsman that I am (I crossed out "skinflint"), I brought a loaf of bread, a jar of peanut butter, some Swiss cheese, a container of mayo and a bunch of tomatoes and apples from home, so I don't need to buy food. Hey, why spend when you don't have to?
That's pretty much all I know at the moment. I got 12 - *twelve*! - hours sleep last night - that's more than I've had in the last week combined, so I feel a lot better. Now it's time to go back to the hospital. All I really do is sit in the chair (I also brought a bag of library books) and make sympathetic noises, but I think it does both of us good. And I have a 22 year old daughter at home holding down the fort, so no worries there. We'll see what happens next.
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