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.

Perspective

The holding pattern seems to be holding, at least as far as we can tell without blood tests.  Gil will be having thorough testing on Dec 23rd as part of the end of the clinical trail, including a full body scan for "honeycombing" bones, bone marrow sample and all the usual suspects of blood and urine tests.  It will be good to get a detailed snapshot of where the disease is now that he's been off the Velcade for a couple of months+. 

 

The current med regimen seems to be managing the peripheral neuropathy pretty well, though the few times we attempted to pull back on them a little, the pain came on strongly.  Sleep has been a little ragged recently but, in general, it's been good.

Unfortunately, (or perhaps fortuitously!) Gil's on his own for a couple of weeks, as I flew to NYC to help with my son Adam's care for a sudden onset and severe case of Guillan-Barre syndrome.  This has given Gil a chance to both be the mice that play (while the cat's away) as well as becoming his own "cat" a little more.  I'm grateful that this is a stable time for him so I don't need to worry.  We're blessed with generous friends and neighbors, so I'm not sure he's even had to cook yet!

Unfortunately, we'll only have two of our three boys home for Christmas, but I am REALLY looking forward to it.  Somehow it doesn't feel like pre Christmas without all the goodie prep I'm usually bustling with at this time of year.  When I get back next week, I'm going to really have to kick the grapefruit eating into gear to get enough peels for our candied grapefruit peel tradition.  Adam's success in rehab (hopefully he'll start in a week or so) having my family home and "Obama hope" will be my big Christmas presents. 

 

This has really has been a life altering year for us all, in so many ways.