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.

"No News is...."

a mixed bag!

Late May a simple cold drove the guy through 3 rounds of different antibiotics to elude the arch villain Pneumonia! A week or so after each round of antibiotics, Gil would start getting the fever and rasp. Scary. The last time they acted on the theory that he had a chronic sinus infection and that the drainage kept reinfecting his lungs. Some IV antibiotics and 3 weeks of oral plus a nebulizer and he emerged victorious, but exhausted.

In the end of June/beginning of July our son David came home in the midst of a crisis. He's been living with us since. I'll get into his story some other blog.

At the end of July we had a scare when Gil had some incredibly painful "spots" which we assumed (incorrectly) were bone fractures, a common Myeloma symptom. He was hospitalized as his pain and fever went up (of course on a Friday night as his doctor was heading out on vacation). And so began the weekend of detective work by a variety of doctors. None of the tests or symptoms were conclusive but by about a week later, after he seemed to respond to a med (one that's been used by people for more than 2000 years!) they decided that it was pseudo gout. and it hasn't returned . Thank God!

We continued with our ongoing farm drams with escaping goats (aptly named Diablo and the outlaws), hoards of meat chickens and stupid turkeys. As we have been getting ready for winter, unfortunately Gil started doing the pneumonia dance with a cold, again. He's on his 2nd round of antibiotics but I suspect it will not be the final one of this episode.

His Myeloma and kidney numbers remain steady, so we feel blessed. We lost a friend from our support group this summer who had been doing his transplant a little before Gil. It was a sobering loss. And today our good friends down the road (the one who got Myeloma at the same time as Gil) who had a transplant about 4 months before Gil, her "numbers" have gone up to the point that she's out of remission and back on the chemo treadmill. I confess it's starting to hit me that we won't be this fortunate forever. Makes me want to savor ever day and pleasure we have.

Sorry, I can't dig up a witty or wise ending. But at least I can let go of the guilt of not having updated you sooner.

The blog is back!!

Good News (Pacific NW trip and pics next entry)

I've been pulling together pics and stories from our trip,

along with putting furniture etc back in the main rooms (post floor refinishing and painting) (which looks absolutely loverly!) and going out to NYC to help Piper et al move into a new apt.

when we were blindsided by Good News!

With no rhyme or reason, the desmoid tumor in Gil's right shoulder, which had been detected a year ago as starting to grow again, has (drum roll)

shrunk significantly

go figure.

But who needs to know why?

Life is Good.

And we're busy with a long and luscious Spring still unfolding.

And I will get to posting the stories and pictures from our wonderful 5 weeks in the West.

sometime

I've been a slug. sorry

There has been news but I just haven't gotten around to blogging it. oops.

in a nutshell:

*We had a great Christmas visit from Chris and Myia.

*Lots of snow.

*more snow

*Gil's numbers are still looking good but the neuropathy in his feet and a bad knee are giving the guy a lot of pain.

*so much snow that Gil gets the truck stuck in the puddle pond by the cabin. (thank God for AAA! I suspect the two tow trucks plus Gil's tractor needed to winch it out was a first for them!)

*a visit from Adam, Kate and the delectable morsel Piper as they checked out Madison's potential. in short, they still like it.

*more snow.

*Gil gets blown over by a sudden onset cold which was immediately treated with some heavy duty antibiotics as well as his standard anti viral drug. After three weeks it was mostly over, but those nights of listening to him wheeze and cough were certainly a PTSD experience for me.

*snow and freezing rain which makes our drive way a luge run (in honor of the Olympics which he watched all of)

*Gil's good left hand develops 3 ?trigger fingers? and possible carpel tunnel which make it difficult or impossible to close his "good" hand. It makes any picking up activity difficult.

*a bout of??food poisoning?? or ? which caused a low grade fever and a 24 hour evacuation of the lower part of his plumbing which even 7 doses of hospital strength Imodium didn't put a dent in. scary but over

*MRI shows shredded meniscus and water on the knee. to be dealt with after we return from our

*** 5 week road trip out to the Pacific Northwest ! which we have been obsessively planning

We leave on March 20th and hope to return April 20th. I'll be bringing my laptop with us so perhaps I'll whip out my camera and do a blog entry with pics and dazzle. (don't hold your breath but I'll try)

But it's fair to say that the above is all the news that's fit to print since I last updated.

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).