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.

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.

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.

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.

Starting to wake from a dream

Perhaps it's post traumatic stress, or age or?? but I feel like my resiliency is scraping bottom. Perhaps it's being home and feeling like I have no traction with my normal end of summer/fall activities. It's like starting to wake from a dream and not feeling really in either world.

Gil is doing well; no major fevers which was our primary concern during this phase. He's still exhausted and nods off a lot but perhaps it's getting a little better. Food is ho hum and occasionally stimulates up chuck, but small amounts are usually ok.

We're watching alot of old movies and TV series while Bob's here. We've made it through the first season of the Wire from HBO (highly recommend it!) and are starting in on season two. Bob and Gil do "errands" almost daily for ?? "things we need" It's actually an excuse to do the Gil & Bob versions of the "On the Road to" movies of Hope and Crosby. Lots of gas but what the hell.

It gives me space to...? wake up.

The short story is....

White blood count 4.4 (within normal range)

Hemoglobin 12.5 (13+ normal)

Platelets 68

Neutrophils 1710 (1800 normal)

His blood is looking GOOD!

Still exhausted, sleeps (or nods off) a lot!

GI tract getting better; he is eating (just not a lot)

There will be ups and downs, but for the moment we feel very blessed!

I'm noticing

aging bodies, good friends, our gorgeous land and accompanying wild (and domestic) companions.

I'm grateful, more later.