Wednesday, October 28, 2009

We are happy

Good numbers again for Gil, including the creatin (though he doesn't remember the numbers the doctor told him). Chris has been with him for a week and a half and is staying til next Sunday.
Steaks and friends and steaks and a neighborhood birthday gathering and steak. What more could a guy ask for? Throw in a golf outing on that perfect weather day a week or so ago and he got it.

And I'm happy too. How could I not be around the smiliest baby in the world? I am totally addicted to her face changing from "baby blob face" to joy when she sees me (particularly when I devolve into goofy noises and expressions) Her occasional laughs have me totally hooked and looking for new crazy things to do which might elicit them. I wondered how this falling in love with a babe that I hadn't birthed and yet was deeply connected to would go. All it took was exposure to the sunshine of her smile. I feel myself smiling a lot more now, even when I'm not with her.
Other NYC highlights included seeing Vanessa Redgrave in The Year of Magical Thinking (Adam and Kate's treat!) and walking through Central Park on a perfect day with a smiley babe in a stroller.

Gil will be driving to NYC before Thanksgiving with one of our turkeys in tow.
I picture what you might be imagining.
No, Julie is taking care of the Thanksgiving butchering. She and Elliot have been a godsend in this time, helping take care of the farm chores and wood for the winter. We are very lucky to have their support.
Anyway, When Gil gets to NYC, I've sprung for tickets to a revival of a favorite musical of his from many years ago(1948), Finnian's Rainbow. He'll get a chance to wallow in baby smiles and then we'll drive back together. I hope to be back on the farm by Nov. 29th or 30th.

Who would have thought a year ago, that we would be feeling our blessings as deeply as this?

Wednesday, October 7, 2009

Well, yes, I AM taking care of Piper

Having finished one marathon 14 hour shift yesterday (it won't usually be that long), I am so impressed with how high maintenance young babes are! Of course, I was highly reinforced on my first day, by her finding my imitation of her gurgling gooo hysterically funny, giving me a full out infant belly laugh. I'm so totally hooked!
But caring for another being's bodily and entertainment functions is exhausting. Kate has amazing stamina to be doing this day in and day out and take care of the apt. and a job, all on an interrupted sleep schedule. She has my profound admiration!

What's different here than my previous blog was referring to, is that I'm not primarily responsible for her well being. I'm simply trying to imitate Adam and Kate's techniques of baby management. (there is a learning curve) That's the freedom I'm relishing.

Gil seems to be thriving also. He had a crew over to eat pizza and watch the Packers and now he's spending the next few days staying at the home of one of his pool playing buddies.
Life is good.
He sees the doc on thursday to check his kidney function; I'll update then.

Monday, October 5, 2009

rebooting our life views

I'm in NYC with the delectable morsel Piper and her entourage! I'm really looking forward to soaking in how different the world looks from" here". I realized that I haven't had an extended time without a husband or children to care for since I was 21 years old. Will I even be able to reconnect with who I am and what I want/need without the context of other's needs?

Gil is clear that one of the first things he wants to do is get a good, high end steak. And then on to computer games and TV and movies without having to deal with anyone else's desires.

It's going to be good for both of us to take responsibility for only our selves for a while. It should give us new eyes for appreciating our life together in (hopefully) remission!

Wednesday, September 30, 2009

the shoulder tumor drama

With all the myeloma drama and the transplant, it's easy to forget the other tumor which had started to rerear it's ugly head this spring.

The shoulder tumor had grown between 2007 and now. The docs feared that it had turned into a more aggressive tumor and would need to "be dealt with". We found out in ?May? that it was still the same old desmoid tumor and yesterday we found out that it had not grown significantly since last February. Thank God! I don't think we'd have the inner strength to deal with it right now! They'll be keeping him on a 6 mo. recheck but hopefully the desmoid will have the common decency to stay put!!

The news got me to thinking about all the drama we've been dealing with since 1997.
First the pneumonias (4 in one year), the over the top insomnia (sleeping only part of one night out of three) and then the brain tumor.

Check, dealt with the brain tumor then, less than a year later, the desmoid tumor in his right arm's bracial plexus (where all the nerves to the right arm and hand pass). We tried surgery and chemo and different chemo and then the Mayo Clinic said "opps, it's inoperable, come back when the pain is great enough and we'll take off your right arm and shoulder".
We travel to New Orleans and they miraculously save his arm (even they didn't think that they could) Oh yes, and we had been building a house and moved into it the day we left for New Orleans.

And, of course, after one of the early rounds of chemo, the derma (covering around the brain) sprung a leak and he was leaking brain fluid out his nose (I could digress and start to crack jokes here, but I'll forbear) There were two surgeries to repair the leak.

And then the myeloma.

I feel like we have been living in a surreal soap opera. The guy has had more than his share of drama.

Saturday, September 26, 2009

Doing better

Gil's numbers are once again great, except for the creatine (which reflects kidney function).
He'll see his doc in two weeks to check it again. Slight dehydration could explain it. He's still weak and not much motivated to do anything, and needs to move around more. He played 9 holes of golf on Weds.; with luck he'll get out a few more times this year.

His doc thinks that he'll be fine on his own while I go to NYC. It'll be a rebooting of our roles. He'll be in charge of his own well being and I will be in charge of mine. When we get back together hopefully we'll both be on more stable ground.

His son Chris will be coming out for a couple of weeks while I'm away and he has other friends who are visiting or have asked him to visit them for a bit. We are both so fortunate to have all the love we're receiving from near and far.

I wonder how different our perspectives will be a year from now.

Thursday, September 17, 2009

Good blood!

Gil's blood is way ahead of expectations:
White blood 5.5
Neutrophils 2800
Red blood 11.5 (down a little but probably because he was slightly dehydrated)

Exhaustion and some nausea are his major issues still (though dehydration can exacerbate that, too). His doc gave him IV fluids today, so with Gil's serious dislike of needles, he's very motivated to keep up his fluid intake orally!

His doctor is very pleased with his progress. She said he was doing better than many 45 year olds! Which is not to say that this has been the proverbial "walk in the park" for him.
I think for both of us it has made us achingly aware of our aging and limitations, as well as how incredibly blessed we are. Even this year, when many garden staples have struggled, we have more than enough to feed ourselves, now and through the winter, as well as to lavish on friends. The raspberries are lush, the beans drunkenly flowering as though there will never be winter, and our two fearless canines have cornered a racoon up a tree! Though we may have to put up with over zealous barking through the night, hopefully he or she will tell the rest of the 'coons to stick clear of the Miller chicken house in the future.

I'm getting ready for my NYC stint by trying to get into gear as though October 4th will be the start of winter, as it's likely that winter, or hard freezes anyway, may come before I return. But my body doesn't believe it and so I poke along making pesto as though I have a month or more to finish up this year's harvest.
Of course, I never feel I'm ready for winter, and whatever hasn't been done has never been "a killing affair".

I think I've passed some invisible turning point. My body seems to be becoming more trusting that "we'll all get by with a little help from our friends", even when my mind still has a hard time asking for help. As a friend once said, I may be "cursed by being too competent". Perhaps I needed to be knocked up side the head to realize that if I don't do better basic self care, I may not be able to care for anyone else. Sixty years old isn't too late to learn. I hope.

Tuesday, September 15, 2009

It's hard

For whatever reason, I've been hitting the wall recently. (post traumatic stress?)
Gil is progressing, still tired, some low level fevers and up chuck, but making progress.

We'll see the doc on Thursday and have new numbers to share. Apologies for the silence for those of you who worried. I probably won't be updating without new numbers or thresholds to report.

I'll be heading off to NYC on Oct 4th to do daycare for our delectable morsel of a granddaughter, Piper Rose (who, by the way, is almost sleeping through the night at only a little over 2 mos! clearly gifted) (hope I haven't jinxed it!)

You all could help by:
* calling and/or visiting the Miller while I'm away (our son, Chris, will be with him for about two weeks somewhere in there)
* suggesting delicious, healing books for me to read on my "days off" from childcare. (just email them to me )

Your support helps.