Saturday, October 09, 2010
John passed away Tuesday, in the very early morning hours. I still have trouble believing it, and alternate between being perfectly fine and being totally weak-legged overwhelmed with sorrow. I know it'll get better, I really do...I just can't imagine how or when.
While I am neither particularly vengeful nor litigious, it seemed impossible to me that his Ct scans in February apparently showed no cancer, and by late September he had advanced, end-stage liver cancer. I was sorta/kinda considering consulting a malpractice attorney. However, I had several email swaps with an oncologist at Mt. Sinai, who reviewed every image and every report John had had in the last year, and his opinion is that in February he had no cancer and by late September it was very advanced. The doctor - and this guy is widely considered to be one of the top hepatic oncologists in the world - said that such rapid progress is unusual but by no means unheard of. And I'm glad. I don't know how I could have lived with the "if only-s" - if only we'd gotten a second opinion faster, gone to Mt Sinai sooner, paid more attention - I dunno. That whole bag of pain doesn't have to be opened, and I'm grateful.
Kids are doing as well as can be expected, each in her own way. I gave the college one the option of taking the quarter off, but she chose to go back to school and I'm glad she did. The older one who is taking a year off between college and grad school is home with me and is, in theory, helping me get the place cleaned up and sorted and all that. We haven't made much progress yet.
In other, but related, news, I suddenly found myself a hay farmer. While I'm a certified NYS nursery professional and horticultural this, that and the other, I don't know beans about hay. Someone asked me what sort of tractor we had, and the only answer I had for him was, "It's blue." Half the equipment we have I can't identify; a couple pieces look more like a helicopter crash than a machine. Anyway, Steve came out today to walk around and talk to me. Steve knows everything there is to know about hay and cows and fields and soil nutrients and what you feed to this animal as opposed to that one and what they sleep on and how many bales of what size and weight you get out of X number of acres and on and on and on. So far he's convinced me that a) I have lots of good hay-able land but that b) I need to recertify my organic status and c) it would make much more sense to make big bales ( one covers with plastic using an extremely cool machine) than the small bales I currently seem to make.
So far, the only thing I'm absolutely set on is that I *do not* want cows. I don't want to be a dairy farmer. I don't care that NY has lots of them and they do well. I don't care that my barns are perfect for cows and look at all that... whatever it's called when they eat what's growing out of the ground. Foraging? Grazing? Whatever. No cows. No. Cows. No chickens, either. I loathe chickens - except when they're scared and they run away, flapping their arms and shouting. That just never gets old for me, so I imagine if I did have chickens, they'd all die of coronaries from my constant harassment of them, just to see them run away.
But (thank God) it's autumn, and I don't have to make any big Hay Decisions right away. Steve said I should Brush (Bush?) Hog all the fields and then ... I forget what it's called already, but you throw seeds over the newly mown ground and apparently it comes up in the spring and is all happy. So I can do that ... with the Brush/Bush Hog and the blue tractor.
And then... I guess we'll just have to see what happens next.
Wednesday, September 29, 2010
We sent all his records, images, etc. to a hepatic oncologist at Mt. Sinai for a second opinion, but so far no word other than, "The CT from March looked good [that was the only one I had on hand to send him - the others come from other hospitals] but a lot can happen in seven months." No kidding.
I try to focus on the present and not "awfulize" too much about the future. My daughters are both here (although the younger one goes back to college next week) and we all sort of prop one another up and take turns giving in to complete collapses.
Other than that, two things keep me going: the first is that, at 55, I've lived enough life to know that no matter how dreadful it seems, things do get better, and one day after the other broken hearts, like broken bones, do knit even though at the time it feels impossible. The other thing that keeps me going is the gifts that you guys give me with your notes and caring. It's amazing how much difference a kind word can make, and I'm am so blessed to have you all in my corner.
My daughters bought me a fancy cell phone - apparently my old one, which i used to make and receive calls, was insufficiently advanced. Now I can access the Internet, have spoken directions to get me from here and there (if I should ever go anywhere more complex than the grocery), take pictures, make movies, record symphonies and dozens of other things. Now if I could only figure out how to make and receive telephone calls...
Friday, September 24, 2010
It's all starting to run together day-wise. No medical news.
My husband is dying and I'm signing up for a Zumba class. I strongly suspect I'm losing my mind.
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.....
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