Sorry for the radio silence

I gather people got worried.

I had Internet connectivity problems

and I hadn't heard back from Dr Callander about the results of his bone marrow biopsy.

Now I have both.

I don't understand all the implications, but Gil's bones are filled with myeloma plasma cells instead of all the diverse fats and cells that normal bone marrow has. It means that we need to keep looking for the right chemical mix to reduce the myeloma. If and how that can be done remains to be seen.

On the "seize the day" front, we spent a 3 day weekend out at the farm, and have committed to purchasing a new Prius, now, this week. It is an investment in testosterone stimulation that is already bringing a glint to the guys eyes, even though he probably won't be doing much actual driving himself.

He's continuing to loose weight, close to 30# at this point, so we're trying to pour all the caloric stuff we can into him. Apparently, his myeloma is burning up calories faster than he can consume them. He does enjoy his feed but can't get through much. I'm open to ideas.

I'm hoping, once again, to move back to the farm this Friday, though it remains to be seen what Dr Callander has in store for him on Thursday. But we are ready, big time ready, to get back to some semblance of normal.

I'm exhausted and still not clear about what's next. It's going to be a "new" normal.

Is it Spring?

The farm was so

familiar, and fecund, and full

of chicken deaths (we have a red tail hawk who has made our chicken run into a daily snack bar) and dogs and Gil's BIG flat screen TV (beloved as an inspiration for a couch nap).

We want to be back there, and will be, God willing, this Friday afternoon.

Monday's lab were the same old red blood 9.1 (no transfusion) platelets 12 (yes a bag) IGG still slightly creeping downward. On Thursday Dr Callander will do a bone marrow biopsy and see if Gil has enough cells to do the hard work of replacing his own blood cells. Not clear what all the options are if he doesn't.

But anyway you look at it, we're moving forward. We're considering buying a new Prius this May instead of next fall as planned, so that the guy can revel in the new car smell and drama. He's off playing pool with his old buddies for the first time in a loong while, and getting more stable on his feet if not always his sense of where and when he is.

It feels like an emotional season of March, which has always been my favorite. March feels like the emergence of possibilities, the revelation of what has been hidden under the snow, the beginning of who knows what?

Amongst the poetry that folks have shared, one stands out, by Mary Oliver

When Death Comes

When death comes

like the hungry bear in autumn;

when death comes and takes all the bright coins from his purse

to buy me, and snaps the purse shut;

when death comes

like the measle-pox;

when death comes

like an iceberg between the shoulder blades,

I want to step through the door full of curiosity, wondering:

what is it going to be like, that cottage of darkness?

And therefore I look upon everything

as a brotherhood and a sisterhood,

and I look upon time as no more than an idea, and I consider eternity as another possibility,

and I think of each life as a flower, as common

as a field daisy, and as singular,

and each name a comfortable music in the mouth,

tending, as all music does, toward silence,

and each body a lion of courage, and something

precious to the earth.

When it’s over, I want to say: all my life

I was a bride married to amazement.

I was the bridegroom, taking the world into my arms.

When it’s over, I don’t want to wonder

if I have made of my life something particular, and real.

I don’t want to find myself sighing and frightened,

or full of argument.

I don’t want to end up simply having visited this world.

Thursday's numbers a little belated

We had moved into Winnemac and had a roast chicken dinner and a good night sleep (sharing a bed for the first time in about 6 weeks!) I expected good news from Thursday's labs. Unfortunately after his blood was drawn, attempting to stand up Gil felt very faint and it didn't get better. They decided that he was dehydrated and started literally squeezing a bag of saline so it would go into his IV even faster. They got him a bed to use in the transfusion room and then Dr Callander showed up.

Her first news of the labs sounded great, like he was starting to produce some of his own red blood and platelets... And then she 'llowed that IF he were severely dehydrated that his blood would have been concentrated and not an accurate measure. When his blood was drawn again after a bag and a half of saline, the numbers weren't all that good. Red blood at 8 (last transfusion was last Sat) and platelets 12 despite having gotten a bag on Monday.

It was a little bit of emotional whiplash for me. Not so much for Gil because the nurse giving him the blood and platelets insisted on giving him Benedryl to ward off a possible reaction even though I told her that he'd had no reaction and they'd stopped giving it because it knocked him out.

So he was indeed absolutely down for the count for the whole day not even able to wake enough to eat his beloved orange custard choc chip ice cream.

Today has been blessedly uneventful. I took a walk this morning, leaving him with a cell phone and a chance to be alone for the first time in an age. We went to a movie and a bit of a walk together in one of the malls as well as a few errands. We're hoping to go out to the farm on Sunday to see the animals and remember our home.

Next labs and chemo are Monday. We will "re create" til then

Warning: philosophical ruminations follow

I've been teaching Piper about ruminants, and the concept of cows and goats eating something tough like grass, which needs lots of chewing and time sitting in other stomachs and then to be brought back up for more chewing before the nutritional value in the food can be absorbed. And so for years I've called my "food for thought" that needs to be brought back up and chewed on repeatedly, my "cud". The following is some early chews; I still don't know what I think yet.

There have been a number of "end of life" issues which have been swimming round my head trying to inform my thoughts on what to do next. The first is my fiscally frugal sense that if we all were to do all of the medical innovations that are available that not only will Medicare go bust but that our creative energies wouldn't be focused on the front end of life where there is a more fruitful impact than at the very end of life. I believe that we need public policy made into law which provides a firm boundary to what the public arena, our tax supported government programs will pay in any given situation. Good luck to any politician trying to get that made into law, but I believe it's important to do so, even if that would have precluded some of what has been spent in the last month keeping Gil alive.

I also feel the need for education and forums for family members about both the inevitability of death but also the many different benefit versus cost ratios. There's, of course, the quality of life one, is the intervention going to cost more quality of life (pain, disorientation, dis ability etc) than it delivers of enjoyable life. There is the money and time ratio, a million dollars for one week as an example. Is the money spent worth the time. And others I can't even remember right now. But the education family forum discussions would hopefully help families be willing to let go especially when their loved one dying has already made it clear that they have let go. Having public policy which limits end of life expenditures would help this.

But my most recent thoughts come from realizing that all the thinking in the world is abstraction when compared to the perspective that only the one staring death in the eye has. I'm getting whiffs of this from my dreams and proximity to Gil's struggle, but I have no illusion that I can grasp this from where I am now. I think the person who is sensing death may be able to realize that death is what makes living a joy, that the finite resource of life is what makes for savoring and passion and drive and ... That if we had no death then life would be one more thing to squander and not be careful with. I suspect that the closeness of death makes it possible, if not easier, to see death as an important gift that alters our value system, our senses, our experience of time. A gift that if we could stop fearing it earlier in life (though I suspect never as dearly as one close to death can) might make our living so much more precious and appreciated.

Of course, early deaths and wasted deaths and cruel deaths and (I know, I know, I don't know) are much harder to make peace with than lives which have been full and well lived. But I am humbled by the complexity of end of life decisions. If Gil needed transfusion for the rest of his life would we decide to do it? as compared to, needing transfusions til we see if his own bone marrow will rally and carry him for another golf playing mamboing year or so, which is where we are at the moment? When is enough, enough? Is it a certain age? or level of illness or disability? Heaven forbid it's an income class decision. I don't know, but it is not as simple as it looked before this crisis, when my thoughts were stuck in the frugality of Medicare mode.

So the latest chewing of this "cud" has left me with the idea of looking at our biological fear of death and how it evolves over a lifetime. It's appropriate for young folks to fear death enough to be careful with their young bodies and all their potential. And of course that drunken sense of immortality of youth often costs them, but hopefully wisens them if they live to tell the tale.

But after a certain age, particularly as time speeds up and we're so caught up in our busyness that we sometime don't even notice that we are alive, perhaps exploring our fear of death, and learning different perspectives on death might make it easier when we are at that end of life stage to make better decisions about when to let go into our own deaths as well as those of our loved ones. And you may have noticed, I haven't once mentioned an after life, both because I don't know if there is one, but because I feel that it's irrelevant on this side of death. We've been given this precious gift of life by way of our parents lovemaking and we are free to make beauty and kindness with it or to scribble and crumple it up. Though I suspect that scribblers have a harder time at the end stage.

So I'm left with looking at my fear of death, and the mess our societal policies and decisions are in because of our fear of death. But, more relevantly, hoping to explore with Gil his fear of death which is one I can visit only in my dreams. He, as he has always been, is my teacher.

Just the numbers

Went in today for labs, good numbers! White blood up to 2.5, highest it's been in a while. Red blood stable at 9. Platelets (drum roll) at 12 . Though he did get a unit on Saturday he hadn't been keeping them this long. Interestingly enough, Dr Callander had him get another bag of platelets today to give a boost to his own marrow's attempts to make some. At least this is what the transfusion nurse thought she meant by it.

His Myeloma indicators are looking up too. His kidney function (which reflects his myeloma status too) is good, for him, and his total protein on Saturday (don't have today's results yet) was significantly down, and usually the IGG is the main part of that total protein. So perhaps we're heading into that "stabilizing time".

On the down side, he's a little more confused today, kept thinking tonight that it was morning and that he was getting up. It's either some small fallout from the dexamethasone on Saturday or just the confusion that comes from being cooped up in rehab. All stations "go" for moving into Winnemac on Thursday. I'm going to roast one of our chickens and hopefully get him on a more normal schedule. I am really ready!

Poetry helps

People have asked how they can help and though I understand the desire to be able to do something to help folks you care for, I really haven't had much to suggest. So here's a few ideas.

First and foremost, donate blood. The place to do it is the Red Cross and I think you can give it directly to Gil if you are blood type A positive, and if not have it go to UW Hospital. Gil has gone through a tremendous amount of blood and platelets and will continue to need them. I'd love to know that we're putting back some of what he's used.

When we move to Winnemac, I'd love to set up some kind of visit schedule to give both of us a break. If you're interested, feel free to drop me a line at piperkath@gmail.com, and when I'm ready to set something up, I'll get back in touch with you.

Come spring, there might be stuff out at the farm that I could use help with, fencing, firewood etc, but I've got it covered at the moment. Let me know if you'd be interested, and I'll get back to you when farm work comes up.

Finally, as I said many years ago in an earlier crisis when a friend said she just wanted something she could DO, poetry helps. Find me a good poem which will help me see some aspect of my life in a new way, one which gives words or images to bring to the surface some of the deep current of feeling I may not be conscious of. And it "shifts the pressure points" in my soul, an image that we are very conscious of with all Gil's bed and chair time.

Now for the numbers: two days out from 2 units of red blood and one of platelets, the red has settled at 9.5 but the platelets dropped to 9. So we're in the hospital getting a bag of platelets and a 20 mg shot of dexamethasone and waiting til Monday to see if the IGG drops. His appetite is improving so we're off to find some tasty morsels when we leave here. During this last week or so, I've been giving myself the freedom to have chocolate croissant whenever I feel like it. Unfortunately, I didn't loose 20# this month, but I will say, chocolate helps too!

It's a mixed bag

White blood (immune system) is up. Yay! No more masks in the nursing home. He's able to eat in the dining room; we even went to a Thai restaurant last night, the first "going out to eat" we'd done since Christmas.

His red blood and platelets are still dropping and he needed both to be transfused yesterday. His IGG (myeloma indicator) is up slightly again. His myeloma, so far, has been insufficiently daunted by the heavy guns they've used. So they added his old chemo Revlemid on top of the Velcade. We'd heard how the two together make a third chemo which can work as well as either did originally.

Then again, his myeloma is not the responsive little kitty cat it once was.

And he is not the big brute that he once was.

He's lost a lot of weight (20#s?) in this last month and pretty much all of it muscle; he still has his cute little Buddha belly. And he's not eating, not even bagels! or meat ! They added something yesterday to stimulate appetite and it must have worked, because the Thai food tasted ok, even good, and went down with out feedback that I've heard of. I'd throw budgets to the wind and get him take out food every meal, if he'd eat it. But when his appetite is down, even his old passions don't seem to appeal. I look forward to getting him to Winnemac; and plying him with my cooking and some of our choice ingredients.

He's been working hard with PT to get his balance and knee back in shape, but yesterday with his counts down, he was wiped out and feeling rotten. Transfusing helped, but we can't do it indefinitely. Sooner or later his own marrow has to start producing and keeping his own blood cells.

It's definitely a mixed bag right now.

Movin' right along...

Hemoglobin (red blood) has held steady since his transfusion on Friday, the longest time since we started round the Horn. White blood has gone down again as has his platelets (he's getting a bag right now). But, considering he had the Velcade on Saturday eve, which gave him another body blow, he's doing pretty darn well!! His IGG (myeloma indicator) had started to rise on Saturday but by this morn has started down again, so I think it's fair to say, they found the sweet spot where his strength was up but before his myeloma took a U turn and started on the rampage again, to begin his next chemo. And he tolerated it well!

So we're heading off to Capital Lakes rehab this afternoon, (deja vu all over again) to get him strong enough and his knee back in shape to move into our Madison digs for a while before the farm. His immune system is low enough that we'll wait a day or so before opening him up to visitors but if you want to see him call into Capitol Lakes and get his phone number and ask the guy directly. His "beautiful assistant" is going to take a day or two out at the farm before Chris leaves. It's delicious not not be needed as much, though he assures me he needs me a lot to snuggle in his bed as soon as the docs say OK. And they did.

So "we're movin' right along in search of good times and good friends" talking about how to savor this next stretch as though it's our last spring, last summer etc , which it well could be. But that's not a bad way to live our lives even if we had a decade. I'm good with it.

Thursday is the next labs/chemo and we'll get a better sense of how stable he actually is at that time. From here on I'll only update if there's some new numbers or I'm waxing philosophic.

Good Lord, who would have thought a week ago that we'd be here!?

A little more is clear

His "head" is as clear as it's ever been, after a good night sleep. But his numbers show a slight backslide, so they decided to go forward with his next chemo today. The plan is to deliver the Velcade sub cutaneously (under the skin not IV) because it seems to leave less peripheral neuropathy. They are also changing the steroid from dexamethesone which is a totally artificial steroid to prednisone which is similar to what our bodies produce and is less likely to alter his thinking. Unfortunately though the FDA approved sub cutaneous delivery on Friday, the pharmacy isn't ready to do it til next week, so today's will be IV.

It's not clear when he'll be heading over to Capitol Lakes rehab. We'll need to monitor the fallout from the Velcade and find out if they have a bed.

But, indeed, more about his course of disease and action is getting clear daily.

Slow and steady....

Last night Gil was afraid that if he went to sleep he'd get lost in his "looking glass" world and not find his way back. Unfortunately, he got only 2 hours sleep and so, of course, he was a little off today. Sigh, we can't win for losing it seems sometimes.

His blood numbers still haven't stabilized, he needed both platelets and red blood today. We still don't know when he'll be able to get his next round of chemo. Actually, at this moment I don't feel like I know much of anything.

I'm ready for this whole adventure to be OVER.

but, as always, the beat goes on.

and He's BACK!

Now that he's better I can tell you all what's been going on since Sunday. He's had a "hospital induced psychosis". He's been completely off his rocker, and I was scared out of my gourd. And this morning when I showed up, he was clear eyed and conversant and has only improved as the day went on. I am so beyond relieved I'm almost giddy.

Apparently his sensitivity to Dexamethazone, his near death experience, and some historical sensitivity from his brain surgery 15 years ago and who knows what all else probably contributed to it. But enough said, he's back and I am in awe of the miracles he pulls out of the Universe. As his beloved brain surgeon said years ago "for a guy with really bad health luck, you sure have great health luck" I assume it's obvious what all he's referring to.

Having said that, his blood improvement continues slowly. They're going to keep him in the hospital for the weekend to continue giving him platelets and helping him regain some strength/stability. I decided last night that though neither he nor I think it's the most up lifting environment for recovery, that going into a nursing home for at least a few days would be a wise idea before Chris and I sign up as 24/7 nurses aides for him. We will go to Winnemac ASAP but "discretion being the better part of valor" suggests that going slowly would be a good idea.

We've gone through crises in the past but nothing like this. I hope it makes us both more grateful for and tolerant of each other's idiosyncrasies. Good Lord, what a trip.

Tired, tired, tired

Gil continues to gain strength. We're evaluating options and assessing needs. We're meeting with the team tomorrow and hopefully make some decisions for going forward.

more tomorrow