Happy New Year!

Had a nice low key evening, kinda like Arlo and Janis:

http://comics.com/arlo&janis/2010-12-31/

Happy New Year! All the best for 2011!

Take that, GVHD!

The GVHD was getting a little uppity, making the skin rash a Stage 3 on a scale of 4. So, we smacked it down with a big 3 day dose of steroids. At the Monday appointment, the skin rash was back down to a Stage 1. Take that, GVHD!

And, now for something completely unrelated ... 17 wonderful Rhodesian Ridgeback puppies!

http://www.youtube.com/watch?v=8up4Oj6l86Y

Merry Christmas!

Hope you're having the right blend of family, friends and festivities this holiday season. We had a wonderful time at the just-right Christmas Eve party hosted by Nancy (ably assisted by Marley) for the crew of great friends. Perfect combination of food, friends and silliness.

Today we took our ride-along-dog for a trip through deserted Ann Arbor and caught up with family by phone. Joe's making the pastry for the chicken pot pie right now. Yum. All's well.





Merry Christmas to you and your family!


--lmb

Without Chemicals, Life Itself Would Be Impossible

In 1979, Monsanto aired public announcements with this lame slogan to counter bad press about PCBs, which they produced. The phrase comes in handy every now and then. Like today. In order to keep the HVGD under control, Joe gets to take ... you guessed it ... more drugs! They're all in pill form, some huge horse pills, some teeny-tiny-take-seven-at-a-time pills. Yum. Gives Joe an excuse to break out the doctor's knife, a handy little tool that olde tymey doctors used to use to count out, cut and smash pills. Here's an example of one:

Food, It's a Beautiful Thing

After Joe had his first transplant a few years ago, dinners were sad affairs. He was very sick and his restricted diet consisted mostly of applesauce and peanuts. Not that he could even taste those since the chemo messed up the taste buds. My sister gave me some homemade frozen dinner modules with a lot of love baked in and they were a great solace.

This time Joe started cooking within a couple of days of returning home. It's so wonderful. He made terrific chicken and rice last night despite the fact his taste buds still aren't up to snuff. We're also generating more tasty leftovers to vacuum and freeze. Thanks for all your offers of food. To my great surprise, we're doing pretty well in the food department.

It's also been wonderful to go to our favorite markets and see our food buddies behind the counters. They're all so happy to see Joe. "How ya doin'?" "Great to see you. You're a tough old buzzard." And, today, "So happy to see you! When did you get out?!" Just a few weeks ago. Let me introduce you to my parole officer.

Oh, and we didn't stay up to watch the first lunar eclipse in 372 years to coincide with winter solstice, but here are some nice pictures of it:

http://cityroom.blogs.nytimes.com/2010/12/20/are-you-watching-tonights-eclipse/?scp=1&sq=lunar%20eclipse&st=cse

Day 31, Can You Believe It?

Joe had his Day 30 checkup today (actually it's Day 31 but who's counting). The nurse referred to Joe as one of the newly transplanted or something like that. When we said it had been 30 days, she said that, yes, he was still a newby. Seems like it's been a heck of a long time already. Ready for graduation. Doc said Joe was "doing well". Yay. For his prize, Joe got to get a bone marrow biopsy, an inhalation mist treatment to guard against pneumonia, and a total of 5 hours in the clinic. What a luckly guy. He's doing well enough that we can start the transition from IV to oral magnesium. Yay. It'll be a few weeks, but one of these days, we'll be able to kiss the pump, IV bags and worthless carrying packs goodbye. Good night.

Keepin' It Boring

We're following the advice the PA gave us in the hospital, "Keep it Boring."
So, we're keeping the magnesium infusion going. Step 1 is to have a cup of coffee so that you're awake, although Real Nurses are certainly able to do this in their sleep. And, we're keeping the rash from GVHD under control with the Goop Regimen. We're going to the doc's appointments for the "So far, so good" pronouncements. These vary in level of enthusiasm. One doc who dresses up as Santa for the kiddies gave us a "Ho! Ho! Ho!" in addition to his recommendations. Another doc hardly makes a peep. Life is Good for some definition of good.

Got to practice

Practice that goofy face dogs make when they're scratching an itch with a back leg.  It's essentially a wide grin, produced by stretching their bodies around to the point where the scratching will be effective.  I find myself itching in random places as the GVHD continues to make me spotty.  Probably more than you wanted to know.

Myeloma blog & Cancer Center

While this blog is unabashedly all about Joe's health and recovery, I'd like to mention a very informative blog created by m' colleague, Phil, who is in the process of dominating myeloma, and his wife, Cassie:

http://mmfordummies.blogspot.com/

We're very lucky to be ten minutes away from the U's cancer center, so we can live in our very own house with our very own dog and pop over to the clinic for the regular checkups and tests. The U hospital system tries to make the hospital and clinics pleasant places to be in for us regular visitors. I wonder what the staff think sometimes, though. The cancer clinic has an ocean theme with a couple of aquariums and three large portals which reveal a mural of deep blue ocean and sea creatures. The thing is that there's a nurse's station behind one the portals making the staff look like some of those sea creatures. One day, I waved at the nurse behind the portal and she waved back. I went around the wall to say,"You look like you're in the ocean." and she replied, "Yes, sometimes I make fish faces, but it's too early for that." Never too early for me, though. I made my best fish face for her as I returned to my seat and stopped bothering her.

What's a Little GVHD Among Friends ...

Joe's doing well for Day +23 post transplant. He's got lots and lots of lovely platelets and great looking electrolytes. The docs are monitoring the Graft Vs. Host Disease (GVHD) twice a week; we saw one of the docs who specializes in treating this disease today. A little GVHD is a good thing; helps to fight the cancer.

The pump is behaving itself these days (thanks to a little programming change) so I don't feel like throwing it out the window like the TV in the SCTV intro.

Moving Right Along

All's well. Doc's are keeping an eye on things, including the eye, with our visits to the clinic and we have a new IV pump that doesn't error out every ml (I kid you not--made infusing 500 ml such fun). Cheers!

Fun with Technology

It's been interesting working out the schedule for the daily IV magnesium (needed while Joe's taking immunosuppressant meds), doctor's appointments and nurses visits. I'm glad the home IV pump is idiot proof. Reminds me of the old Dennis Wolfberg schtick about being a teacher in NYC:

"Then they gave me the slow class for six consecutive years. Not special, just slow. I used to think of them as stationary. They grouped them according to intelligence tests. At the low end they used to have categories called, in order, moron, imbecile and it would actually bottom out with idiot. This amused me because, conceivably you could have an imbecile working very hard to become a moron!"

The ear thermometer showed up today. Works just fine.

At our first appointment on Friday, the doc said that Joe was doing well for Day +17 after transplant. We'll have at least a couple of doctor's appointments a week for a while as they evaluate Joe's progress and look for signs of GVHD and infection.

"Where ya been?"

That's what Coney wanted to know when Joe got back home today. She's done a great job of holding the fort these last 3 weeks. Things were pretty much as he left them except the bedspread and Coney are a lot cleaner. Onto Phase II of Recovery at home. Yay.

Tote that Barge. Flush that Line.

Joe's blood count and vitals numbers are just peachy. We're waiting on the results of one test and then we'll have an idea of when Joe can blow that pop stand. Tomorrow we'll get training on how to flush the Neostar line and give Magnesium through it.

And, now for something completely different. Animal fun facts and story:

First, it's all about otters:

http://cuteoverload.com/2010/11/29/meowters/

Then, it's about a very smart dog (looks like Sellie):

An older, tired-looking dog wandered into my yard. I could tell from his collar and well-fed belly that he had a home and was well taken care of.

He calmly came over to me, I gave him a few pats on his head; he then followed me into my house, slowly walked down the hall, curled up in the corner and fell asleep.

An hour later, he went to the door, and I let him out. The next day he was back, greeted me in my yard, walked inside and resumed his spot in the hall and again slept for about an hour. This continued off and on for several weeks. Curious I pinned a note to his collar:

'I would like to find out who the owner of this wonderful sweet dog is and ask if you are aware that almost every afternoon your dog comes to my house for a nap.'

The next day he arrived for his nap, with a different note pinned to his collar:

'He lives in a home with 6 children, 2 under the age of 3 - he's trying to catch up on his sleep. Can I come with him tomorrow?'

Going for Gold

The doc said, "Engraftment takes a lot of energy." Joe's going for Olympic Gold in the engraftment event. Feels like we have this GIANT cheering section. Thanks very much for all your positive thoughts and words of encouragement.

Houston, We Have Engraftment

There's evidence that Joe's system is growing stem cells. Yay. Things are still going well and as expected. The docs, PAs, nurses and techs have just been stellar (keeping with the space metaphor here). They work well together, coordinating their efforts to minimize interruptions. They've been managing side effects very well and timing meds so that Joe can get more sleep when he needs it. Just wonderful. And, Joe's been a very active participant, too, asking and answering questions, dealing extraordinarily well with pain and discomfort, exercising. Yay Joe.

In honor of the occasion, I ordered a spiffy ear thermometer for home just like they use in the hospital. When I mentioned this to a nurse, she said that there's even newer technology that allows you to get a temperature by rolling a thermometer across the forehead. Sigh. It really is hard keeping up with the latest and greatest ...

Happy Holidays

Interactive Feature

Reader Photos: Documenting Dinner

Send us photos of your Thanksgiving meal.

• Submit a Photo | Photo Tips
• Sam Sifton’s Help Line | Recipes

No, we didn't really submit the hospital Thanksgiving dinner photo to the New York Times, even though they requested photos from readers. Dinner consisted of ham (not bad) with a pineapple slice and stuffing (a bit dry, but OK). This photo is especially for Sarah, who enjoys pics of hospital food. The food here is much better than other institutions we've been to (e.g., another hospital that shall remain nameless and a college that once offered leftover fish in green jello to conference participants). This was my first hospital food experience. I tasted the food so it felt needed while Joe was enjoying an imported Morgan & York bocata jamon and butter.

So, Happy Thanksgiving.

Now, onto other holidays with this wonderful video:

http://www.youtube.com/watch?v=jm3dm5J5r0A

Pre-engraftment

This is a term used by the oncologist.  If he hadn't said it, I'd have thought it was the condition prior to moving to Chicago and going into politics. I told that to a nurse and it went right over her head.  She said that if we did move, Chicago also had a great bone marrow transplant hospital.

Thanks to everybody for support, silliness, and something else beginning with "s" I guess.  Pursuit of happiness will consist of me checking off the days since transplant, and chanting engraft, you buggers, engraft!

Fashion on the Floor

Joe's the best dressed patient in the unit by simply wearing jeans and a casual button shirt. The nurses and PAs thought he dressed up for his transplant (um no, this is what he wears everyday). Most patients wear plaid or polka dot jammies and fuzzy slippers (I know I would).

Meanwhile I'm getting fashion ideas from the staff. One PA has a stunning silver and gold dive watch that I want to appropriate. And, several nurses have great, practical cargo-style uniform pants with lots and lots of lovely pockets.

All is still going according to plan in these pre-engraftment days.

Cheers!

Joke du Jour

At The Movies

A man lay spread out over three seats in the second row of a crowded movie theater. As he lay there breathing heavily, an usher came over and said, "That's very rude of you, sir, taking up three seats. Didn't you learn any manners? Where did you come from?" The man looked up helplessly and said, "The balcony!"

According to Hoyle

We've had a string of relatively good days, for some definition of "good". Things are going "according to Hoyle" http://en.wikipedia.org/wiki/Edmond_Hoyle, as expected by the docs. We're in the phase where the white blood cell count is low until the new bone marrow cells begin to grow, aka engraftment. Joe's doing all the right things, things we should all be doing, like healthy eating, enough fluids, exercise, lots of sleep, fun intellectual activities. Things got a little bit easier on Friday when Joe got to swap out his bulky "Patient Pal" IV-pole for a sleeker "Trans-Pal". He doesn't need to have a "Wide Load" sign when he does his laps anymore.

On the the day he was admitted, Joe was required to select two prints from the collection brought by a representative of the Art Brigade. "Oh, just anything." just wouldn't do. Perhaps she sensed he was the son of an artist. He selected a "Vichy, Comite des Fetes" by Roger Broders, a 30's Moderne travel poster http://www.allposters.com/-sp/Vichy-Comite-des-Fetes-Posters_i804071_.htm and a kind of peaceful, kind of eerie painting of 3 gasoline pumps out on the Great Plains. This week he chose Gustave's Caillebotte's "Paris on a Rainy Day, 1877" http://www.allposters.com/gallery.asp?startat=/getposter.asp&APNum=323317&CID=779BAC3C77654C3693EFAB2D2C18727B&PPID=1&Search=caillebotte&f=t&FindID=0&P=1&PP=3&sortby=PD&c=c&page=1
and a silly photo of an assertive squirrel coming out of a mailbox. The prints in the hallway change weekly, too. A good thing.

Much better today, thank-you.

As Mr. McLuggage says himself, "things are in fact better than, um, yesterday". Took a few laps around the floor today (as opposed to being on da floor) past views of Mediterranean scenes. Yay.

Generating healthcare data like crazy

The docs say Joe is doing fine. We're so grateful for the 10 out of 10 match donor; many people don't even have the option. That said, this is not one of those life experiences you want to have if you can avoid it. The side effects of the immunosuppressants (to keep Joe's system from rejecting the new cells) and the residual chemo have not been fun for Joe. He's a real trooper, though, and we're hoping that tomorrow will be a more boring day of generating healthcare data.

Happy Transplant Day ...

... that's what the card that Joe got after his stem cell transplant said. The donor is a very healthy 23 year old who provided so many stem cells that everyone double checked the numbers and 3/4 of the cells are being frozen future use. The Physician Assistant who administered the stem cells said her mantra is "Keep it Boring" and that's what Joe did today. Hooray! Now onto the Joe Recovery and Reinvestment Act of 2010 (JRRA).

Make Sure to Answer the Door When FedEx Knocks

The stems cells will arrive via FedEx (!) sometime tomorrow who knows when from who knows where (donor confidentiality, don't ya know). Thank-you, Anonymous Volunteer Donor!

Chemo Done and Plans

Today was the last day of chemo with all its rough side effects.

After visiting Joe, I met with the core caregiving team, which includes Coney Dog, of course, to eat snacks and discuss the Joe Recovery Project. The recovery is likely to be a long slog, 6 months or so. At the moment, my freezers are completely full of great leftovers from meals Joe has made. I'm chipping away at these gourmet MRE's and will beg for comfort food when the reserves are getting low; it would not be good for anyone's recovery or morale for me to start learning how to cook at this time. I'm also considering using an online calendar or accepting help to coordinate offers of assistance at some point in the coming months.

Thanks for thinking of us!!!

Chemo, Process, and Cuisine

Joe started chemo at 4AM on Thursday. He thinks they start early so that patients won't be awake enough to put up a fuss. They've got good meds to manage the symptoms. He'll get chemo through Sunday, then one rest day before getting the shiny new stem cells on Tuesday, Nov. 16. One friend said that she "hopes Joe gets stem cells from a donor as witty and sparky as he is!!" I'm afraid this comment is making me think of "Young Frankenstein"... "Young Frankenstein" is in the air. Not wanting to give Joe any germs, we've started the "elbow routine" from the train station farewell scene. Jon Stewart was doing the same thing with his guest, Rosario Dawson, to avoid passing along his stomach flu bug.

Being a Process Guy, Joe's already identified many areas where the system could be improved. Surprisingly, the food's not bad. Looks like food, tastes like food. They even have decent coffee-flavored coffee. Beats the SPAM, Pop Tarts and canned crab meat the stranded Carnival Cruise Lines passengers got.

The flood of good wishes and offers of help make us so happy. Thanks! This weekend I'm going to start to think about how I can take you up on all those offers.

Here we go

Get Neostar. Check.
Get admitted. Check.
Chemo starts tomorrow.

Joe would rather not have visitors at this time.
Thanks for all your good wishes!

My Schedule

My managers have been extraordinarily supportive and flexible as we've been preparing for this healthcare excitement. We've worked out a project load that I can work on half time (probably afternoons), which will give me time to help Joe during his recovery. My sister will be helping, too. If things go as they did last time, there are going to be lots of people helping out in lots of ways; it's a beautiful thing.

All Systems Go

We got news that the donor cleared today, so it's all systems go for admission to Hotel UMich on Wednesday, Nov. 10. Joe'll be getting a shiny new immune system via a stem cell transplant.