We can use the "R" word now!

Gil is officially in remission! His bone marrow biopsy, last week, showed 3% abnormal plasma cells. Anything under 5% is considered remission.

This just confirms what we'd been feeling; Gil IS better (though being off the steroids is surely a part of that). Now if his legs and feet would just get the news and quiet down, we'd both "kick up our heels"! His kidney function has returned to almost normal after being elevated for a couple of months.

Ah the luxury of worrying about other things, like getting the truck stuck trying to plow us out of our BIG snow storm! I should post a picture of him as he rides off in his rusty "charger" to plow the world. He is such a white knight at heart!

We are preparing for the first Christmas season we've had in three years. Two years ago, Gil was hit hard with the pneumonia (which ultimately led to the the myeloma diagnosis) on his way to what became his last Santa Claus "gig". He didn't get out of the hospital 'til Christmas afternoon. It kinda put a damper on the season. And of course last year we all were breathing with Adam.

This year I'm doing what I love best: a greenery filled Advent with preparations for the rebirth of Spirit in my heart and life (I call it internal housecleaning!), a few gatherings of friends but no big deals, fooling around with crafts and goodies, and looking forward to having Chris and Miya with us for Christmas eve and day (first time we've had family home that early in years) It's handy that we spread Christmas out for the full 12 days so we don't have post Christmas morn blow out depression, and it makes it not as important to have loved ones here on that exact day, but I am excited about having a real Christmas eve and morn!

I'm trying to write a piece about "what I learned in NYC, or lessons I learned from Piper"

I want to capture that release in words before routine puts me back to sleep. But even so, it will be a lighter sleep with all the good news we've had.

Perhaps pictures next time!

continued. . .

I saved and then couldn't retrieve the blog entry I started, so here is the rest.

Our trip back was picture perfect, no construction, no traffic jams; we made it, without pushing, in 16 hours! 3 drivers helped.

We got home Monday eve at 9 pm, which was good because Gil had forgotten that he'd set up his next doc appt. on Tuesday morn. opps.

We spent most of Tuesday at UW Hospital and had his blood tests and bone marrow biopsy. This is the test done after 100 days which should show what myeloma activity is still there. It will be the confirmation (we hope)that he is indeed in remission. We've been acting "as if" ever since his good blood tests but this is the real deal test.

We should have the news in about a week.

Unfortunately, he's been having a good deal more peripheral neuropathy in his feet, ankles and lower legs in the lat month. Doctor Callandar says that that happens sometimes after a bone marrow transplant and that it should get better over time. It definitely cramped his style in NYC as he often took the bus when we walked. He's got pain meds but they bring there own side effects. All in all we have so much to be grateful for that some how the pain seems like a small price. And we hope it does, indeed, fade.

OK, my attempts to post some pictures of the most delectable baby in the world will commence. (don't hold your breath!)

It worked! Ah what a morsel she is! That sunny smile would greet me (almost) every time I got her up. Somehow seeing the turkeys just doesn't do it for me. But I am glad to be home in this spot of beauty surrounded by good friends. We are so fortunate.

More later, but all in all, we're doing well!

We're Home!

Gil and his pool buddy, Tom, drove to NYC to snatch me away from the most delectable baby in the world! (I'm hoping to include a picture) Gil indulged in his alter ego, NYC tour guide, with his friend, while I indulged in my last two days as primary daytime squisher of Piper Rose. Her new "nanny" started the day after we left.

The night before Thanksgiving we went to see Finian's Rainbow on Broadway. Gil had seen it when it first opened on Broadway, in 1947 and had sung songs from it to me on our second date, so we have a soft spot in our hearts for it. And it was amazing, gorgeous scenery, lighting, dancing and songs, but zero leg room. Ah well.

We had Thanksgiving dinner with Kate's folks, NE of Philadelphia, along with the 23# turkey that Gil had brought out with him (along assorted other farm goods).

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?

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.

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!

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.

We're home; we're exhausted.

We got the go ahead at 10 am (one more lab result tomorrow). I left to get the house ready. Gil's brother Bob arrived to bring the guy home after a little drama with the pharmacy and the insurance co. Tell me WHY do some folks think that insurance companies are more reliable than the federal government????)

Made it home; dogs are very happy!

White blood count stable at 2.5, hemoglobin up to 11.2. platelets up to 1500, neutrophils up to 1800. They said that now that the stem cells are working on all four that the rise will be slower.

Time to sleep in our own bed, together!

He's looking good!

He continues to excel at white blood cell growth, 2.6 today! Though he's a little down on the platelets and continues to have some GI issues, it looks good for leaving the hospital tomorrow!!

If all goes well after the doctors do their rounds in the mid morn, I'll head home with most of his belongings. Gil will stay at the hospital to do all the sign out rigamarole and be brought home by his brother Bob, mid afternoon. Bob is expecting to stay and keep the guy company for the next two weeks. What ever else happens, we'll laugh a lot!

I'm heading back early to make sure that the homestead is ready for his still slightly neutropenic self. When I was back the other night, I discovered our refrigerator was 62 degrees (though the fridge freezer was still OK). I emptied it and hope a good thawing and cleaning will produce cold when I turn it back on. If not, ARG!

Next post (hopefully) from the farm.

"Cookin' with gas"

Gil's numbers are kickin' butt!

Hemoglobin steady at 10.5

Platelets up to 18,000

White Blood Count (drum roll) 1.4 (yesterday .5)

Neutephils (another part of the immune system) 1000 (yesterday 250)

His new marrow is being incredibly productive! To put it in perspective, normal White Blood Count is 8-10, as I understand it. So he has a way to go, but is ahead of expectations!

Strength is also improving. We made a full loop of the 6th floor in addition to some physical therapy on stairs.

Food is still ho hum, but he's made it through some soup as well as some of the egg custard I made for him when I went back to the farm last night.

Lookin' GOOD!

Day T plus 11 and growing!

Gil's new bone marrow is producing new white blood cells! and neutrophils!! They both are part of the immune system and his are starting to kick it into gear! With the healing of his throat and intestinal track comes a good deal of sloughing off of cells, so the GI issues are still strong.

He's starting to lose his hair so he asked me to cut it all off (so as to avoid looking moth eaten or mangy) A teenage visitor yesterday had suggested a Mohawk as an interim look, so here you have it. I think I look way too jolly doing it!

A quick look at the numbers for those of you who are interested: After 2 bags of red blood cells, his hemoglobin is up to 10.5 After 2 bags of platelets, he's up to 9000 and (drum roll) his white blood count as of this morn was 0.5, half way to the magic "1.0" he needs for 2 days to be released.

To be released he needs, in addition to the WBC, to have consumed 1000 calories for two days, have walked daily.

Here's hoping for this Friday or Saturday!!

Not Yet

It's been a day.

No increase in white blood cells yet.

This morning and early aft, Gil was in a fog. It devolved into hallucinations where , he said, it was like watching a 35 mil camera film with one out of every 35 frames . . . odd.

He was looking at me and saw a flash of . . . his mother, or a tiger, or the head on a nickle (we since figured out it was G. Washington) etc.

It was funny but a little freaky.

It turns out that, though, that he may have had too much morphine and also been retaining it. So, they took him off his basal morphine but left him with his push button self dosing.

A few hours later, he's woken up and been able to laugh about it, even manage to watch a movie. The pain is manageable.

Progress!! Apple sauce is starting to have a bad after taste, but rice pudding is good! The next few weeks will be an adventure in taste!

We are hopeful that the white blood cells will start kicking it into gear tomorrow, and that we can still make it out of here by the end of the week.

The only way out is UP

This must be bottom.

Last night we had a little drama at bed time when he spiked a fever (expected) and needed to chest x rayed and blood cultured and hooked up to antibiotics etc. ( but starting at 10pm!?!?)

No pneumonia so far! though there have been fevers off and on all day.

Today was the lowest numbers, and the greatest likelihood of infection. He's pretty much always in a semi sleep state, except for a couple of hours this aft when (with 3 obsessive compulsive assistants) he completed a 300 piece jig saw puzzle!

Food = apple sauce. There was hope for tolerating rice pudding this eve but no luck so far!

We should start seeing a rise in his white blood cells tomorrow (made by his own new bone marrow!)

The only way out is UP!

Dream Passage

I've been asked for "more pictures, less numbers and tell us what it's like" for us now.

So

It feels a little like this picture, a long passage with a slight dream like quality to it. Gil's pretty much completely raw from his mouth all the way through his system. The pain is always there and makes it impossible to eat much. He's on continuous morphine and self administered doses. Plus alot of other meds for nausea.

His default state is asleep. He can be roused for vitals and brief visits and of course, the bathroom. This picture was the one time today when he was told he needed to get up and walk. We made it down to the lounge where he tromped me in Cribbage, even though he fell asleep each time it was my turn to lay down cards!

I'm in an altered state too. Time has slowed way down. I try to make it to the hospital before 7am so I can touch base with the night nurse. I help the guy get dressed, though some time it doesn't get finished til late morning. You know, I'm not exactly sure what the heck we do. !? Some how the day slogs on with some jigsaw, some games, some TV or DVDs but as of now he is, at best, 10% present. I stay til he goes to bed (last night that was early!) usually 10.

I think about getting to the other side of this where we can go where or do what we want without thought about meds or doc appts. Watching Gil in his primal state, does make me feel how connected I am to him. Kinda sweet remembering him over the years and imagining this next phase. The farm seems like a previous lifetime, though when I've gone back every 3rd or 4th night, it feels like home. I'm grateful for the young folks taking care of the farm flora and fauna.

For both of us, this feels like an uncomfortable dream with occasional swirls of hope.

(and his white blood count is under 0.1) (look for it to start rising by this Monday!)

Hitting the wall

We're hitting the "nadir" of the transplant process. Gil's white blood count is 0.1 today and his throat and esophagus and gut are pretty raw. They've put him on a morphine drip where he can give himself a dose whenever he needs it. The morphine on top of the other meds he's on for nausea make him pretty out of it.

He's spent the day mostly in a doze, with a little work on the third jig saw puzzle of his stay. Food is getting pretty difficult, so I went to Babcock Hall and got him some orange custard chocolate chip ice cream. Even that wasn't easy to eat! I'm going out to get rice pudding next.

A fever may be flirting with him. His doc is going on vacation for a week. At her final visit this eve, she said she wanted to start him on antibiotics since at this point with no immune system, infections can take over like wild fire. We both feel very trusting in the medical care he's getting!

"T" plus 6: Storm Warnings

Gil's symptoms are building up pressure. The mouth sores moving through his GI tract whip up sudden squalls of nausea and diarrhea. The meds they give him quiet his body but leave him in a stupor. Unfortunately, restless leg syndrome is rearing it's ugly head. I'd think with all the meds he's on, it'd leave him be. But the neuropathy interacts with it and, not being able to use our Migun massage table, there's not much else we can do.

His white blood count is down to .2. It should hit zero soon. We'll be watching closely for infection and acting quickly. This is the "sailing 'round the Horn" phase of the transplant. We must be vigilant.

By next week his new bone marrow should be producing new white and red blood cells. Meanwhile, we're in an altered state.

"T" day plus 5

Time plods on.

He has the beginning of mouth sores and the runs but is basically OK. They've started to track his white blood count which has fallen to .7. It should hit zero in the next few days and then start to rise. To that end they're starting to give him the same Nupogen shots I gave him before his harvest to stimulate the new growth.

Despite all the "toys" he brought with him to the hospital, we're both getting a little stir crazy. We've been here a week; (though it feels like more!); one more (or so) to go.

At the support group yesterday, I heard more transplant stories and realized how wildly different every one's reactions are. What most people have in common, though, is significant time post transplant chemo free. It'll be worth it.

So far, so good

"T" plus 3 and he's got some diarrhea and fatigue but much less than is normal for this stage. Is it the Miller luck? Will it last?? Who knows? But we're grateful (and perhaps a little bored). It's still early in the process.

What we expect: Gil's white blood cells should drop to zero in the next few days. He may get infections which will be treated with antibiotics. By day "T" plus 10 his white blood count should be rising but he may need transfusion of red blood cells.

There is no such thing as "normal". There is just your experience.

"T" day plus 2

Here he is, watching Tiger Woods and playing solitaire!

Yesterday was uneventful. I went back to the farm last night and this morn to pick and freeze vegis. I brought back a sampling of vegis for Dr Callander (who had expressed interest in "the tyranny of beans" needing to be picked every two days), as well as many ripe melons for the nurses. It's not clear if Gil will be allowed any peeled and then cut up melon, because it appears he is starting gastro intestinal side effects.

We know that this particular "dark night" is necessary to cross through before he's released, but the stories have been a little intimidating. The doc said that perhaps his having had chemo and radiation before might mean his system would be thrown for less of a loop. Time will tell.

He's been feeling tired today which makes me hope that sleep might be one of his side effects. Wouldn't that be nice!! Friday night he'd had a bad restless leg attack which had cut his sleep down to under 4 hours. It seems only fair that he get a little sleep aid with everything else.

We're both going to bed a little earlier tonight.

T day plus 0 and food still tastes good!

Gil got his stem cells back this morning with fanfare and a t shirt from the transplant team which has "we're marrow minded" on the back. He plans to get the staff to sign it. He's been playing some of his favorite music on his ipod speaker system (thanks for the loan from Adam/Kate) and has promised copies of the ones different staff members like.

My brother Ed says Gil will rot in his own private copyright infringement hell someday!

I went out to the Apple store "genius bar" today, to get Gil's computer outfitted with a device that will allow him to access the hospital's WIFI to play on line poker and cribbage. Success!

And food still tastes good to the guy; Shrimp Scampi for lunch and Barbecue Ribs for dinner.

Perhaps the momentum of his ability to enjoy will carry him further into this next week than all the horror stories have led us to expect.

"T"ransplant day plus zero. Stay tuned.

All quiet on the UW front

Gil felt fine today. At his doc's recommendation, we made an effort at exercise, walking around and around the halls culminating in a little Exercycle in the lounge. After a roaring game of Slip n Slide Sorry with a 4 year old he met in the lounge, we were given permission to go out on a pass. It felt good to get out and about even when we had to wait 45 minutes to get served in a burger joint. The bottom line is that he still has his immune system for another day or so, so make hay while the sun shines.

He also got moved to a new room. It's bigger and he was finally able to set up his computer so he can play games AND watch TV at the same time. The in room land line phone number is

608 267 8502. Room number is B6/644. Please call before visiting and sadly, plants or flowers aren't allowed. But he does love being loved, so feel free as the spirit moves you.

Tomorrow around 9:30, he'll get back his stem cells, and the transplant clock starts ticking, "T day zero". Stay tuned!

And so it all begins...

Here the guy is in his room awaiting his 15 minute shot of Melphalan. After it he will basically have no more blood making bone marrow. He'll coast on his existing blood cells 'til Friday when they'll give him back his stem cells which will start making new bone marrow. In the transplant lingo that's "T day zero" (today is T minus 2) His low point should be "T plus 4 or 5" and his counts should start coming up by "T plus 10"

I'll give more info as I understand it.

Today went well albeit slowly. We played cards (oh Hell) with our good friends Joe and Diana. And I won! Kinda amazing since I don't even know how to score! If you're interested in visiting, the next 2 or 3 days are probably best. Give a call on our cell and I can let you know if it's a good time. 608 807 6596. Obviously, if you have cold etc. it's not a good idea, otherwise, hand washing and Purell are just fine.

I already accidentally lost this post once editing it, so I'll call it enough for tonight. More tomorrow..

Cleared for take off

Gil went in for his final pre transplant check. Two long CT scans later, and a fair amount of blood and urine, and it looks good!

He starts Wednesday Aug 12th. He'll be given a pic line (a durable portal for all the fluids going in, so no need for multiple "sticks") and his chemo Melfalen.

He waits through Thursday and then on Friday gets his frozen and "washed" stem cells returned to him. By the weekend the chemo should start impacting his GI tract.

The next 10 days or so may be varying degrees of unpleasant to miserable. Hopefully 2 to 3 weeks in after he's able to eat and drink and walk (not simultaneously!) they'll consider letting him go home.

So there's the overview. I'll update the blog as the transplant unfolds. We're psyched; we're intimidated; but mostly we're ready to stop waiting and start what's next.

We've got enough!

Somewhat unexpectedly, Gil had more stem cells harvested on his second day than his first! We've got enough (barely) for two transplants. We'll be doing the final pre transplant testing and check in with his doc this Friday and, hopefully, start the actual transplant the week of August 10.

And so we're on track, schedule wise, to have Gil be at least 8 weeks post transplant before I need to leave for NYC to be first child care for our granddaughter . I'm afraid we're both besotted with Piper Rose, whom we spent the last 3+ days with in NYC. I hope to to include the latest pics of the young morsel in my next blog. We had a great time with Adam and Kate and David Leigh, enjoying dim sum twice and seeing Adam's office at WNYC.

We're heading home from NYC this evening and look forward to a few days rest before things really start.

and so it all begins...

Today was the first day of Gil's stem cell harvest.  Though he didn't have any young stem cells in his blood there appears to be enough "adult" stem cells for at least one transplant.  The doc says at Gil's age that that's probably all that he would use anyway.  Hey, one transplant sounds great.

The harvesting is quite a process.  They hook him up intravenously in both arms. One arm's blood goes out into a machine where it's put through a centrifuge, separated into red and white blood cells, plasma and stem cells.  The stem cells are extracted and the rest goes back through the other arm's IV. And so on for 3 1/2 hours.

We go back tomorrow for another go at it.  We just got word that he got 3/4ths of what he'll need from today's "taking his blood out for a spin".  We'll see what we harvest tomorrow!

It's starting!!

Life is good.

We have a grand daughter! who came into the world very smoothly (thanks to her gifted mom's healthy body) and is now the center of our universe:  Piper Rose Hirsch born 7/12/09 at 5:33 pm in NYC.

Everything else is just details.

But finally we have details.  Gil had his pre bone marrow transplant  (BMT) physical today and we have a plan.  with dates.  I am grateful!.

So far his numbers look good and baring any surprises the plan is:

on Saturday 7/25 I will start giving him 4 days of twice daily sub cutaneous shots of a stem cell stimulating drug (they thought it was better that I do it than trying to find a clinic to give it to him on the weekend).

On Tuesday 7/28 after his am shot, he'll have labs drawn and if he appears to have enough stem cells, they'll start harvesting.  It may take two days to get enough cells.

Then, on August 1st, we'll take off for NYC to meet Piper Rose in person.

Gil's transplant will, hopefully, begin soon after our return on August 4th.  But transplant positions are given based on need, and the down side of Gil's "good numbers" is he may get bumped; the up side is that hopefully he'll be resilient enough to make enough of a recovery that I'll be able to fly out in the beginning of October  and be the first month+ of child care when Kate has to go back to work.  I won't leave him without 8+ weeks into the transplant and plenty of loving folks supporting him.

So them's the details.

The garden is blossoming and being fruitful.

We start butchering chickens this weekend (90 to do)

Our new solar photo voltaic tracker has covered our electricity plus about $35 this first month.

We are blessed with good friends

Gil and a friend and I (with major support by Gil's John Deere tractor) just replaced our front walkway with  large flat stones which should be easier to keep clean  this winter.

So,  Life is Good.

The Time has come

"the Time has come, the Walrus said, to speak of many things...."

We decided today, with Dr. Callander, to start the stem cell transplant process now, not wait for the Fall.   

First the complete physical, to see if he can handle it (despite the weight gain, he seems in good enough shape) then the stem cell harvesting (a possible ordeal in it's own write), then we set the date for the actual transplant.  We're hoping for the beginning of August, right after the Page/Piper family reunion here.

We have a couple of sets of friends from the Myeloma support group who are in the post hospital phase of the transplant process, so we are getting an up close view (not particularly pretty) of what we'll be going through (though there is quite a bit of individual difference we hear).  

In future blogs, I'm sure I'll indulge in all the details, but let it suffice for now that 

we are ready to move on to the next step.

Grateful for all the support we have.   and our beautiful new photovoltaic collector! 

(picture next post)

Life is good.

Gil's biopsy of the tumor remnant shows it to be his old hombre a fibromatosis, aka dezmoid tumor.  

The good news is that it probably is slow growing, though that will need to be confirmed, and as non life threatening as a ball of gristle growing amid the nerves to your right arm/hand can be.  

And there really is no bad news!  It's spring and we live in beauty and bounty,  and we know it; a gift in it's own right!  Gil's sleeping better and productive with all his large and noisy "toys". (he was just given a new one, a chipper leaf vacuum)  Our progeny are well and progressing with their next phases of life.  What more could we ask for?

Energy.  I have so little these days I feel like a limp dishrag.  Lots of naps seem to be helping.

And Adventure!  Gil and his brother Bob are going to take a two week meander West ("go West, young men!").  Ostensibly it's to visit Chris and Miya, but actually it's to be open to what ever adventures the blue highways they're going to take west may offer!  They both are in 7th heaven planning it.  And I'm "kinda" looking forward to two weeks    alone.

Also BIG news!!  We are getting a solar photo voltaic tracker system installed next month.  This is the culmination of a 35 year old dream of mine and profoundly satisfying.  

So.  Life is good.

all blogged out

  Excuse the long blog silence; I've been waiting for all "the other shoes" to drop.  

In February an MRI showed a doubling in size of the dezmoid tumor remnant in Gil's bracial plexis (neck/shoulder area). There was some concern that the dezmoid (a clod of fibrous gristle, benign, but in a lousy spot wrapped around the remaining nerves for his right arm and hand) could have morphed into a malignant type of tumor called a sarcoma. 

  

And then we waited, and were on vacation, then the surgeon was on vacation, then the other surgeon who was needed to weigh in was on vacation.....   you get the idea.   We dealt with it initially with our old standby, denial, but as time passed, the  unfairness of some other potentially big time destructive tumor blindsiding us  got both our undies in a bundle.

Today we learned that it's very unlikely that it's morphed.  We'll get a simple needle biopsy sometime in the next week (no more knives in that area, thank God!) and should get the results within a few days after.    

So, though not all the shoes have landed, we're in process and been reinforced in our belief that "no way, Jose" could there be any more malignancy than we're already dealing with!

Speaking of which, after one set of labs where Gil's Myeloma numbers rose, they've returned to relative stability and we're on course for doing his stem cell transplant next Oct/Nov. (after the golf and garden season and the first round of grandparent bonding with the young Hirsch morsel!!!)

So that's all the news that's fit to print.  I may get back in to regular blogging, but, I'll confess, I'm exhausted, beat, have zero energy and am basically all blogged out.  So until all the shoes have dropped, consider no news is good news.

a somewhat disconcerting note

There's been a long silence in the Gil updates blog because, indeed, he was "steady as she goes".

Well, his numbers now are on the move again, so I suspect I'll be getting back into the blog habit.

On Feb 6th, six weeks after his previous Dr Callander appt., we saw an increase in all his numbers, most significantly in his IGG and M spike.  We discussed with her this time our desire to wait until Oct/Nov (if possible) for the stem cell transplant, the next major attack on the Myeloma.  She had felt that this was doable with various interum meds, as long as the M spike didn't really go through the roof. Our next visit with her on March 20th will be very informative. 

We've been gathering more info from friends in the support group and our doc, about what all we'll be heading into with the stem cell transplant.  

The first step will involve harvesting Gil's own stem cells through meds and a dialysis type procedure which will flush out his stem cells.  Those cells will be frozen as he has a 2 to 4 week recovery.  When he goes into the hospital for the actual transplant, he'll be given meds which effectively kill off almost all of his bone marrow.  This will involve about 3 weeks of pretty extensive vomiting, diarrhea, and reduced immune system. (she said to expect about a 20# weight loss, but didn't recommend it as a dieting strategy!) At the razors edge of bone marrow death but before Gil's, his stem cells will be reintroduced and, hopefully, multiply and be fruitful.   When he leaves the hospital his immune system will be in the early stages of rebirth, so we'll probably spend some time at a friends' clean house in Madison before returning to the wilds of the flora and fauna we live with on the farm.

 On an unrelated but somewhat disconcerting note, the remnant of Gil's desmoid tumor in his right shoulder has started growing again.  When we get back to Madison (we're in NYC at the moment, helping Adam and Kate move into their new appt), they'll do a biopsy of the growth and see what there is to see.

To be continued....

"Steady as she goes"

I just got the last of Gil's numbers from his Dec 23rd testing and he is, indeed, steady on all counts.  Thought his numbers weren't as low as we would have liked when he had to stop the Velcade, the steadiness is fine to coast on.

We'll see the doc in February and see how it's going.  She expects that by late spring, if his numbers are rising, that it'll be time to try a stem cell transplant.

It's a pretty arduous ordeal and the better shape he's in, the easier it will be on him.  

But,

I've been in NYC for a month with Adam, and the pizza and soda and chips have been winning the day.  He gained 8#s last month and we'll see, now that I'm back, if his superego will get back into the fight.

A brief Adam update:

he has a form on Guillan Barre which has severe axonal damage.  He's just weaning himself off the respirator with hopes of moving to intensive inpatient rehab soon.  His prognosis is uncertain except that it will take a long time to regain what ever muscle function he'll be able to get .

His spirits are for the most part amazingly good.  My son the Buddhist. God, I love him.