He isn't running yet....

but he sure can move with his walker or cane! It's Christmas day and he's home on a "day pass" from the rehab; he'll be coming home for good on Friday. Everything is going well with his rehab since his work ethic and persistence make him a physical therapist's dream. They really work him hard there, but he still exceeds expectations.

Chris and Miya are out for their annual "luxury vacation" in Wisconsin, but with some sad news since Miya had a miscarriage just before they left Montana. They're still young and have it in perspective, but it has cast a shadow over the visit.

I had in mind a reflection on all our changes in 2011 (so in vogue at this time of year) but will wait for more energy and a less obvious time.

the blog is back

and the guy has become even more of a bionic man! Gil had a knee replacement yesterday and so far everything looks great!The back story....We last saw our hero in the spring starting up on his chemo again after a hiatus to recover from the arch villain, the RSV virus. The Revlimid was much slower this time in reducing the myeloma cells so it took 6+ months to get where he had been after 1 month the first time.

We had a good summer with Adam and Kate and the delectable morsel, Piper Rose living with us, along with 100 meat chickens, 10 goats and 15 turkeys ! Kate proved herself to be a gifted chicken gutter and berry manager, Adam developed his right hand man skills with Gil and Piper, well Piper kept us all entertained! an important role! As the summer wore on Gil's right knee was bothering him more and more. We took a week plus vacation out at Pipers Nest in Maine with our good friends the Kavanaughs, but it was becoming clear that something had to be done about the knee. A couple of years ago when the knee first started getting serious, the MRI showed NO cartilage to speak of left. With the help of our brother in law Jed who is a gifted Osteopath (go ahead, look it up!) and our friend Harry Contempasis who does his own evolution of the Feldencris method, Gil was able to dance and get around pretty well. His doctors were baffled that he wasn't in more pain. When his Myeloma numbers came down to the point where he could take a couple months off the chemo (though still ON the detested dexamethazone!)they encouraged him to go for it.

Which brings us today, the day after the surgery, when, with the walker he made it about 90 feet. The guy truly is amazing. He'll be going to a residential rehab place for about 10 days after he's released from the hospital on Sunday. With a new knee and the weight loss we both are working on we hope to be in shape to welcome the new Miller into our family. Chris and Miya are expecting in June and we are looking forward to being able to play and enjoy who ever it is in Miya's belly as well as the new Hirsch coming in March to be a little bro or sis for Piper. We have a lot to look forward to, to motivate us to get these aging bodies in shape.

I'll try to keep the blog up to date, but somehow living life seems to leave little time for writing. Perhaps it will be easier this winter.

A little back story..

The cold I wrote of last month got it's second wind and really started to kick the guy's ass (actually shnaz and lungs) after we returned from our trip. He started his low grade fever/fatigue dance (of course on a Friday night when I can't really check in with anyone who knows him!) so we started the antibiotics we'd taken with us for the trip.

By Monday he was, at best, the same so in we trundled to Dr Callandar who cultured everything, gave him IV antibiotics and a new even more heavy duty oral antibiotic to take home. We found out that night that his main issue was a virus called RSV which is known for inflaming airways and takes quite a while to clear. He also was starting some low grade secondary infections. Unfortunately, one of the side effects of the chemo Revlemid is that it reduces your immune system response, so he was taken off that too, for the rest of the month.

Which brings me to now.

He's 99.9% done with the cough so "Haa, take that RSV!!" but his Myeloma #s are back with a vengeance. So he's back on both the Revlemid and the Dex and we have every reason to think he'll respond as well and quickly as he did when he first used them.

Unfortunately, he's back to "0" in his ability to cop a few Zs on his Dex night. Before he stopped he'd gotten up to 3 or 4 hours pseudo sleep on those nights. I'm hoping that next week he can sleep even an hour, since he doesn't seem to be able to get more than 6 or 7 on the other nights to compensate for it.

And of course, "there's no great loss without some small gain" so though he's getting less total sleep because of the Dex, he is also getting the anti inflammatory benefit of the steroid which helps his knee feel much better. So the guy will be able to dance if he has the energy to stand up!

In the non medical arenas of our lives, we did a picture perfect prairie burn earlier this month, I started milking goats at Fantome Farm again and will be raising the buck kids (5 so far, 5 more coming) for the flourishing goat meat market, again. (ah how quickly one forgets the misery of last summer with Diablo and the Outlaws) Hopefully I've got the containment issues worked out more successfully. And they are darn cute.

Gil's been working on shaping the driveway with the heavy machinery he has come to know and love. I'm appreciating the slow spring so I can try to get on top of things like pruning raspberries before all the other garden tasks seduce me away and I return to a jungle as happened last year.

It's very important to have good berries this year because

Piper Rose et al are arriving May 25th and will be living with us til ?Septemberish?

And that girl sure does love her berries!!

We've got a full month ahead of us with graduations and family visits and visiting David

This slow, cool Spring has kind of been an extended "season of March" my favorite season of the year because before things take off and grow like gangbusters, I can actually see the lay of the land and feel the mounting tension of possibilities.

Now it's time to get it in gear and "get this puppy done!"

It's going to be a good and full year.

His numbers are goooood

The new chemo Revlemid with it's sidekick Dexamethazone are indeed kicking the myeloma cancer's butt!! His # were good enough this month that his Doc offered him one month off of either the Dex or the Revlemid to see what would happen. Gil chose the Dex because he thought the lack of sleep night or two were what was causing his deep fatigue. Unfortunately, it's likely that it's the Revlemid which is doing it and the Dex may have a secondary gain of reducing inflammation in the knee (aka "there's no great harm without some small good") so next month, if she offers him the same deal, he may take off from the Revlemid, instead.

But, it is a delight !! to have a Friday night where the guy goes to bed with me and actually stays in the bed, asleep for most of the night. And we are both grateful that he responds so well to medication.

Unfortunately, the cold I spoke about last month which he seemed to largely have shaken on our trip, has come back with a vengeance since we got home. As the low grade fever and wooziness appeared, we decided to start him on the antibiotic his doc had sent with us on our trip for just this eventuality. But I do find it uncanny that he takes dives which need medical intervention on Friday nights or Saturdays, when all we can get ahold of is the on call doc.

But we do feel blessed with the doctor we have, her competence, flexibility, and her letting us make some judgement calls with her as the safety net. And she truly feels like a friend, glad to see us, interested in our lives outside of the clinic, and very open to naturalpath kind of remedies (like neti pots and elderberry syrup etc) As one of Gil's docs, years ago, said, "for a guy with bad health luck, you sure have good health luck!"

And you know, he's right.

He may not be "a contenda" but he sure is "a responda"

Gil's latest blood test came back and after only about 18 days of his new chemo, (drum roll) his numbers are already starting to come down! He really is a responder! The half dose of the dexamethazone has resulted in one night each week of only one hour or so of sleep. Fortunately by the next night, he's able to sleep and then nap to try to catch up.

Last week the sleep deprivation exacerbated a cold he was fighting. We've been taking various herbal immune stimulants when he first starts getting anything, but this time we were up in Duluth visiting David, and didn't have it with us. By the time we got home Sunday night, I was worried that he was already on the pneumonia slippery slope. His cough was getting pretty bad when we went in Tuesday to his doctor for his blood tests. She was concerned, but a chest xray didn't show any dark spots and she has been very supportive of our road trips, so she sent us off with a round of antibiotics to use at the first sign of the dreaded P and her blessing.

So, as I write, we are basking in the generosity of New Orleans and our good friends. We're looking forward to the rest of our swing through the southeast. We'll be ending our trip with a few days in NYC, with lots of dim sum and discussions with Adam and Kate and Piper Rose about their anticipated move to Madison this June!! Obviously, more news on this story as it becomes available.

Our spirits are good. Gil's bronchitis has stabilized and tonight is his low/no sleep night, so we'll know soon if he's going to be able to dodge this P bullet or not. If we do, elderberry syrup, EmergenC, Ziacam and an herb Andrographis will get some serious credit. But sleep is the best medicine. to be continued. . .

Numbers

We got "the numbers" last night and I'll try to put them in some context. I've written about the M spike which is what we've been using to gauge his progress. When he was first diagnosed it was 3.25, after the stem cell transplant it was down in the .7 range. It had started to creep up and then last week jumped to 1.27, hence the decision to do a bone marrow biopsy which shows exactly what percent abnormal plasma cells are there.

When Gil was first diagnosed his bone marrow showed 40% myeloma plasma cells. By the time he'd done the thalidimide and switched to Dr Callandar, he was down to 30%, after the transplant he was about 3% (anything under 5% is remission)

We found out last night that the abnormal plasma is back up to 30%. And there are a few other numbers that are changing rapidly enough that it's clear it's time to call out the troops.

Fortunately there's still a plum of a chemo next in line, Revlemid. It's taken orally, has very little side effects and no neuropathy. He will need to do the dexamethazone to muscle the effect up but we're starting on half a much as what used to keep him up 2 nights a week. He had a chance of being part of a study which would have used Avastin (reduces blood flow to rapidly growing cells like cancer) in addition to the Revlemid and dex but which required every 2 week IV.

But we're about to leave to for a 4 week vacation! His doctor said keep our priorities straight, and she was right! He should do well on what he's going to be taking.

So enough of the numbers! He's back on a good drug which given his history as a responder to these chemos, should get his numbers in line soon. Meanwhile we prepare for sun and fun. I'll write more before we leave.

Oh well...

Gil's numbers are up. His doctor called this afternoon to tell us. He's getting a bone marrow biopsy this Friday (hopefully without "la Cocaracha" moments, I believe I told that story in an older blog) Anyway, the biopsy will probably confirm what the blood/urine tests have indicated, his myeloma is moving again. It's such a clever morphing cancer, able to find a way around any chemo walls we put up. The chemo that Gil will probably go to next, Revlemid, is the least side effects chemo commonly used for Myeloma, AND it's oral! Whether or not he'll need to take the dreaded dexamethazone is yet to be decided.

So as of now, our planned trip to the south east (New Orleans, North Carolina, Wash DC and NYC (for another nibble of the delectable morsel!) is still on. It's fun planning to see old friends and places (New Orleans and the mountains of N Carolina ) as well as the new and exciting Washington DC, staying with our nephew and his fiance and exploring all the riches our country has stored there! and of course, springtime in the south, a particularly lovely idea while we are in the middle of a blizzard. Speaking of which, Gil is as I write, is out in the teeth of the storm trying to snow blow our walk. "Why?" you might ask, as I did. "because there will be less to do tomorrow" says the snow man, ever the optimist in the face of an expected additional 10" by morn.

We are well in general. Gil has been fighting the last residue of a cold from the fall but seems to be winning when he has enough sleep. We are trying a variety of herbal supplements to boast his immune system (with the blessing of his doc) notably Elderberry and Andrograshis. It seems to help. We've been getting something called Quick Defense by Gaia herbs, in case anyone wants to look it up. He reluctantly drinks ginger tea with me, of an eve, but hasn't strayed too far from his historical appetites.

I will update the blog after the biopsy and decision re chemo, but all in all, life is good.