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.

And the beat goes on...

Gil's myeloma numbers are holding steady and the pain may be diminishing (or at least is more manageable) so we're going to stay in this holding pattern as long as we can.

The doctor seemed to be saying that, once this coasting isn't working anymore, we would do a little more med adjusting but that the stem cell transplant might be the next intervention in line.  To that end, she encouraged Gil to start exercising and generally trying to get in better shape.  (of course, as we all know, easier said than done!) Any support you can offer is welcome.

 

Unfortunately, the CT scan Gil had last week showed that he did indeed have at least one kidney stone. Though it's fairly big, it appears to be able to move so the plan is ALOT more water and hope that it makes it out without needing intervention.  

I remember the pain Gil went through two years ago when he had his major kidney stone attack while we were out east dealing with my mom's death. Let's hope this one slips out as easily as some of the other small ones did.

Our spirits are good.  We're basically ready for winter with the firewood on the porch and the hoses coiled and ready for the barn.  Today the turkeys are starting their transit to the feeding of many family gatherings.  And we have been given the gift of getting all our boys and their loves here for an extended Christmas with us!  Life is good!

I'm ending with a picture we took a few weeks ago of the sunrise on the western hills (one of my favorite ways to experience sunrises!)  We are both savoring more of the day to day gifts we have, an "attitude of gratitude"; it helps.  If you'd like a larger printed copy, let us know.  We'll be printing copies for friends.

Gil's other big birthday present

I'm hoping to be able to post PICTURES (with luck, no more boring text only posts!) of Gil's two big presents; the TV you heard about but the other one was on the day after his party, our daughter in law, Kate, ran a MARATHON to raise money for myeloma research.  This is not simply an academic gift.  Gil's life expectancy is intimately tied to the research into new treatments.  This was, indeed, a gift of life (and a pretty impressive feat in it's own right!!!)  Thank you Kate!

It looks like I got the pictures on, so I'll give you one of Gil's face when he first saw the TV

(Obviously, there's a learning curve on size and placement of pictures on this blog, but I'm pleased to be starting.)

On the health front, the new pain and nerve rehab drugs appear to be making a difference.  We're hopeful that the neuropathy is going to reverse itself.  

So the beat goes on.

Holding Pattern

Three weeks ago Gil went back on the dexamethazone without the Velcade.  His myeloma numbers had been increasing during the previous two weeks when he had been off everything. Now, with the dex, his numbers are steady and even decreasing a little.

So,   we're in a holding pattern.  He'll stay with the dex, continue meds to help with the peripheral neuropathy, and hope it fades away.  He's getting the hang of using the meds for break through pain earlier so he's not trying to battle a raging fire.  (actually not a bad metaphor as the pain often feels like burning)  It's hard to say if it's getting any better yet.

BUT he has a new toy or rather toys which are a major distraction!!  On his 70th birthday last week he received a large flat screen LCD TV with HD and a Blue Ray player.  Our friend, Terry Millar guided me (actually he did everything) to use the family/friend $ contributions to get Gil the best home entertainment system possible.  

It was a complete surprise; we had it set up by Circuit City while we had Gil out for a birthday dinner.  The look on his face was priceless as he said "Holy shit!" about 25 times in the first 10 minutes!  He and his brother Bob stayed up half the night setting up the surround sound and watching a bank heist movie.  

His card said "some boys don't get older, their toys just get more expensive!"  

I'm glad his toys give him so much joy!

It's a "package deal"

It's been a rough couple of weeks.  The peripheral neuropathy has varied, with no discernible pattern so far, from uncomfortable to downright miserable.  He's tried everything but the kitchen sink and once we think something can be relied upon to bring relief, the next time it doesn't.

On Tuesday, when we saw his doctor, she gave him some different pain and nerve restoring meds and said that it might be a couple of months or more before we'll know if this neuropathy will fade or not.  She convinced us to restart the weekly dexamethazone  and to wait a bit longer before deciding whether or not to eventually continue with the Velcade trial.

That was before the final numbers came in.  Gil's M spike rose to .88 (from .72) during this last 3 weeks.  We're waiting for a call back from his doc, but the implication was that we may need to decide sooner rather than wait much longer re. continuing with some chemo, the Velcade or something different. 

We have both been incredibly lucky this lifetime.  With all of Gil's medical issues, he's regularly pulled off miracles (his right arm as a case in point!)  But the superstitious part of me wonders when the payback happens.   I need to remember the bumper sticker we made back after his brain tumor.

"Shit Happens, Miracles Happen, (it's a package deal)"

It's part of how cancer magic works.  Having a terminal illness, where you expect "shitty" things to happen, opens your eyes to all the unexpected miracles that are going on.  

Somehow, I think I'd started to expect that Gil would always have great luck, good responses, great numbers. 

 Wake up time! so I'm tuning in to miracles right now.