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).

We are happy

Good numbers again for Gil, including the creatin (though he doesn't remember the numbers the doctor told him). Chris has been with him for a week and a half and is staying til next Sunday.

Steaks and friends and steaks and a neighborhood birthday gathering and steak. What more could a guy ask for? Throw in a golf outing on that perfect weather day a week or so ago and he got it.

And I'm happy too. How could I not be around the smiliest baby in the world? I am totally addicted to her face changing from "baby blob face" to joy when she sees me (particularly when I devolve into goofy noises and expressions) Her occasional laughs have me totally hooked and looking for new crazy things to do which might elicit them. I wondered how this falling in love with a babe that I hadn't birthed and yet was deeply connected to would go. All it took was exposure to the sunshine of her smile. I feel myself smiling a lot more now, even when I'm not with her.

Other NYC highlights included seeing Vanessa Redgrave in The Year of Magical Thinking (Adam and Kate's treat!) and walking through Central Park on a perfect day with a smiley babe in a stroller.

Gil will be driving to NYC before Thanksgiving with one of our turkeys in tow.

I picture what you might be imagining.

No, Julie is taking care of the Thanksgiving butchering. She and Elliot have been a godsend in this time, helping take care of the farm chores and wood for the winter. We are very lucky to have their support.

Anyway, When Gil gets to NYC, I've sprung for tickets to a revival of a favorite musical of his from many years ago(1948), Finnian's Rainbow. He'll get a chance to wallow in baby smiles and then we'll drive back together. I hope to be back on the farm by Nov. 29th or 30th.

Who would have thought a year ago, that we would be feeling our blessings as deeply as this?

Well, yes, I AM taking care of Piper

Having finished one marathon 14 hour shift yesterday (it won't usually be that long), I am so impressed with how high maintenance young babes are! Of course, I was highly reinforced on my first day, by her finding my imitation of her gurgling gooo hysterically funny, giving me a full out infant belly laugh. I'm so totally hooked!

But caring for another being's bodily and entertainment functions is exhausting. Kate has amazing stamina to be doing this day in and day out and take care of the apt. and a job, all on an interrupted sleep schedule. She has my profound admiration!

What's different here than my previous blog was referring to, is that I'm not primarily responsible for her well being. I'm simply trying to imitate Adam and Kate's techniques of baby management. (there is a learning curve) That's the freedom I'm relishing.

Gil seems to be thriving also. He had a crew over to eat pizza and watch the Packers and now he's spending the next few days staying at the home of one of his pool playing buddies.

Life is good.

He sees the doc on thursday to check his kidney function; I'll update then.

rebooting our life views

I'm in NYC with the delectable morsel Piper and her entourage! I'm really looking forward to soaking in how different the world looks from" here". I realized that I haven't had an extended time without a husband or children to care for since I was 21 years old. Will I even be able to reconnect with who I am and what I want/need without the context of other's needs?

Gil is clear that one of the first things he wants to do is get a good, high end steak. And then on to computer games and TV and movies without having to deal with anyone else's desires.

It's going to be good for both of us to take responsibility for only our selves for a while. It should give us new eyes for appreciating our life together in (hopefully) remission!

the shoulder tumor drama

With all the myeloma drama and the transplant, it's easy to forget the other tumor which had started to rerear it's ugly head this spring.

The shoulder tumor had grown between 2007 and now. The docs feared that it had turned into a more aggressive tumor and would need to "be dealt with". We found out in ?May? that it was still the same old desmoid tumor and yesterday we found out that it had not grown significantly since last February. Thank God! I don't think we'd have the inner strength to deal with it right now! They'll be keeping him on a 6 mo. recheck but hopefully the desmoid will have the common decency to stay put!!

The news got me to thinking about all the drama we've been dealing with since 1997.

First the pneumonias (4 in one year), the over the top insomnia (sleeping only part of one night out of three) and then the brain tumor.

Check, dealt with the brain tumor then, less than a year later, the desmoid tumor in his right arm's bracial plexus (where all the nerves to the right arm and hand pass). We tried surgery and chemo and different chemo and then the Mayo Clinic said "opps, it's inoperable, come back when the pain is great enough and we'll take off your right arm and shoulder".

We travel to New Orleans and they miraculously save his arm (even they didn't think that they could) Oh yes, and we had been building a house and moved into it the day we left for New Orleans.

And, of course, after one of the early rounds of chemo, the derma (covering around the brain) sprung a leak and he was leaking brain fluid out his nose (I could digress and start to crack jokes here, but I'll forbear) There were two surgeries to repair the leak.

And then the myeloma.

I feel like we have been living in a surreal soap opera. The guy has had more than his share of drama.