Day 125 - Another new normal

Vlad is doing very well. He's had a new job for two weeks and seems to be handling things well. It's hard to rein him in. He is a naturally gregarious and busy person and is difficult to contain these days.

He understands his limits only when he hits the wall. He always hits it full force. He will suddenly lose all his energy. You can see it in his face. He droops from the soul. Wherever we are, we head home. But even then, a nap is unlikely. He'll mess at his computer for hours.

Saturday we went to a family get-together at Alex and Kelley's apartment. It was mostly Kelley's family; her grandmother and an aunt were in from Michigan and they invited Vlad and I and Alex's mom, Lana, and her husband, John, and little Anna to come over and meet everyone.

I was nervous about going; I only had met a few people in Kelley's family and only briefly. But we had a great time; they were fun, interesting and kind. These folks were all Kathleen's family, Kelley's mother. (pictured with Alex and Kelley).

Alex was well at home with all of them, especially Kelley's younger cousins, who have a real fondness for Alex. Being there with all of them, it is easy to see they probably have a great future together. And we're happy for Alex. It's a great family. And he's happy. It doesn't get any better.

Alex cooked fajitas rather expertly just like his dad, so there were some familiar threads that made us feel very satisfied. It was an unexpectedly wonderful day.

Day 100 - My future's so bright ...

Yay! Awesome milestone.

Vlad saw his M.D. Anderson eye doctor today. She said his eyes are fine. His tear production is better than before the transplant. Opposite of the usual result.

He's had a contract job offer in the past couple of days, which is interesting. He's technically not supposed to work. But he's doing so much better than the other transplanters. (knock on wood.) He sees Alousi Monday. We'll see. Hmmm.

He's been working at home sporadically on a small contract gig translating a 400-page technical manual from English to Russian. The folks he's dealing with in Houston are great; the money has been a godsend. But the guy in Moscow is weird. Quitting may be the best option.

My job. Well, you have to laugh at the workload. It's an industry in free-fall. Survival dictates one just let the stress go, lest one have a stroke.

Sasha and Valiya came for dinner last night. We had food from Golden Grains, another Russian grocery I finally went to last week. It's run by a couple from Sochi (where the 2014 Winter Olympics will be). She makes all the fresh food, and it's pretty good and pretty fresh. I like this place better than the Russian General Store, which is crowded and has food that's not so fresh. Her Napoleon was lovely. And her Korean carrots were great. Anyway, we enjoyed ourselves. S&V are going to the Dominican Republic this weekend for a week at a resort with some New York friends. I've never seen them so excited about a trip.

Anyway, all is well, trying to creep toward normal, though, I don't trust it yet.

Day 98

Today Vlad and I attended the Survivorship Class. It was grounding to say the least. And profound for me. The teacher, Karen Stolar, an amazingly capable advanced-practice nurse, distilled the essence of what is our new normal for the next couple of years in 2.5 hours of analogies, Hints from Heloise and a bunch of frightening factoids that she made palatable with her cool kaffeeklatsch style.

The dangers of GvHD (Graft vs. Host Disease) -- which is when the donor-blood's immune system goes berserk in response to an injury, like a sunburn -- are breath-taking. Prevention is living a healthy lifestyle. For instance, Vlad must never again go in the sun without SPF 50 sunblock. For the rest of his life. A burn could lead to GvHD of the skin.

GvHD can hit any part of the body, just like cancer. It can show up in your mouth. Turn up on your legs. If you catch it early, it will likely be a minor inconvenience to fix it. If you let it go, it will develop into a monster problem. So vigilance is key.

There are lots of limitations. While he is taking the tacrolimus (Prograf), an immunosuppressive drug to help keep GvHD at bay, he keeps many food limitations. Plus no drinking. No sushi. He shouldn't go to crowded places without a mask, work in the garden or swim anywhere. No work yet, probably not till at least 6 months, which is June 15. His tacrolimus dosage will be evaluated around 6 months. He could come off it then, or not.

And there are new concerns. He's much more likely to contract skin cancer and heart disease. Osteoporosis is another one.

Still, as Karen said, he's lucky. There are tens of thousands of people who need stem cell transplants who have no donors and never get the live-saving treatment. So all the limitations are small potatoes in the scheme of things. And please think about becoming a donor. There were only two donors in the entire bank that matched him. If those two hadn't donated, I don't know where we'd be.

Anyway, we realized we had gotten way ahead of ourselves. He's doing really well -- for a transplant patient. He's still nowhere near normal. He still needs a lot of attention that I haven't been giving as much lately. Maybe I want him to be well; I will it and pretend. But he's very much in the thick of it.

So we were talking later today and decided our idea to do a cruise was a very bad one. We wanted to go to New York, but that's no good. Now we're thinking of renting a cabin somewhere on a river or a lake where Vlad can fish and I can watch birds and read. Maybe in the Hill Country. If you know of a place, give us a shout.

Odds and ends: Vlad had his "Day 100" biopsy Monday (Actually Day 97). Results to trickle in starting Monday March 29. We're looking for results to say he has close to 100% donor blood ... He did another sleep study and they found his oxygen during sleep dropped to 50%, which is really bad, so he has a new C-PAP machine coming. We hope this will help his fatigue as well. .... He still takes the magnesium, which is very unpleasant. Tacrolimus depletes the body's magnesium levels. ... I learned something interesting at class today: The body never gets rid of the iron we ingest: unless we bleed.

Day 79 - Happy Birthday!

Yesterday (Day 78) was Vlad's 52nd birthday, which has obvious significance, but it's also kind of a secondary anniversary, as it was two years ago yesterday that he got the initial diagnosis of AML. We were needing to see the ocean anyway, so Galveston was the obvious place to go for us to celebrate his improving health.

We walked around on the beach by the seawall for awhile at low tide. The shells had already been picked over by a dozen or so beachcombers, not that Galveston ever has great shelling. It was a sunny, slightly breezy day. Just beautiful for being there. We stopped for Ben & Jerry's. Then the beach. Then we found Murdochs was open, it had been since November we found out. I found a few things and we sat out on the verandah overlooking the water, like we used to do. We love that spot. It's cool to see familiarity.

We moseyed around and ended up at Gaido's for a wonderful birthday dinner. Fresh snapper and shrimp and bisque. We went to Fisherman's Wharf for coffee and to watch the birds in the harbor. We got a show from the cormorants. We made a video of their ridiculously loud sounds. It was a great day.

Vlad's going to the hospital twice a week now. He does infusions of magnesium every day at home and has blood work done at the hospital. They also do some infusions at MDA. He's started a new sleep study and is hoping to get a new CPAP machine to sleep better. He's working on stamina now. It's also kind of a confusing time. He's getting calls from recruiters and doesn't know if he'll be ready to take a contract job at Day 100 or whether his hospital schedule will interfere with all that.

I'm taking a few days off from work this week. Things are kind of manic there right now. I'm hoping the time off will help me find some calm, catch up on some things (I did get a hair cut finally).

Thanks for checking in. Here are some more photos:
I found "angel wings" shell. We kept it as a souvenir.

The verandah at Murdochs.

Laura at Murdochs.

Vlad at Gaido's.


Cormorants hanging out on the Elissa.

Day 61

Vlad's as good as he can be. We're still very thankful.

Most of the home repairs are over. The guys come back tomorrow to do a lot of cleanup work, and the gutters. And then there's the sheetrock inside where it leaked.

DirecTV guy came to recalibrate the dish, but he didn't have a big enough ladder. On Sundays they don't carry the 40-foot ladder. He said it like it's against their religion. WHATever. Another night of no Olympics.

But we have 8 of the 10 Oscar-nominated films to watch. Up in the Air was awesome. But last night we watched Couples' Retreat (NOT a contender), which was nowhere near as funny as I expected. But it was OK.

There's nothing extraordinary in Vlad's schedule this week. We're hoping things calm down a bit.

Day 57

Vlad is fighting a minor infection. If it's not from his line I would be very surprised. It bleeds more than any line he's ever had. You can't completely clean it because you have to limit your cleaning window to keep things as sterile as possible. I suppose infusion nurses could do a thorough cleaning, but no one at the hospital seems bothered by all the dried blood in there.

He is pretty tired and kind of weak. His eyebrow hair is finally falling out, four months after his last chemo.

He was at the hospital all day yesterday. His sugar is doing weird things. He remains on the antibiotic infusions. I think just dealing with the 3 infusions a day tires him out. Last month I wistfully thought about a weekend in Galveston this month, and going to Fort Worth to see the family. And we were invited to Beaumont this weekend. But it's just not possible. It's tricky staying on top of all the meds and infusions. Adding travel to the mix would be asking for trouble.

As it turns out, I'm working the homepage on Sunday. We've lost two homepage people in the past month. I saw this coming a week ago when my coworker Will said he had taken a job with Memorial Hermann's web site. He's a great guy and will be a huge loss. But I hope they get the news side sorted out soon. I don't need this.

Anyway, there's a lot going on with the siding job that's turning into a roof job. This crew has been so wonderful. Ricky and his guys are from Honduras. My front patio was a shambles after the siding install, but they power-washed everything and it almost looks better than when they started. I mean, the freeze killed the plants or it might have been much worse. But all in all, great.

When Ricky got the sagging roof off he garage he found a huge problem: a bad frame job. It had been repaired long before we moved in. Another few hundred dollars to rebuild the frame. We're also getting a horizontal vent on the roof, replacing the rotating turbans (my term) we replaced after Ike. The turbans blew off during Ike and water gushed in. And they had been installed incorrectly before we moved in, we found out. The folks who lived here before us were not very careful with their repairs.

Anyway, just saw this morning that Capt. Phil Harris of the crab boat Cornelia Marie on the show "Deadliest Catch" died. That's one of Vlad's favorite shows. We watched a lot of it in the hospital. We used to shake our heads at Capt. Phil, chain-smoking and drinking coffee and not eating anything and working 20 hours straight. Sorry to see he died; he was a really cool guy.

Day 52 - update

Vlad's been at the hospital since this morning. It's taking longer than normal; Fridays are always a zoo at M.D. Anderson, rivaled only by Mondays. His blood tests showed some bacteria, but apparently it's treatable with antibiotics. I need to change his dressing tonight.

A neighborhood spy reported our siding job to the authorities. We were said to be using salvage Hardieplank, which we aren't. Upon investigation, our crew was using siding over the garage that was leftover from another area on our house, which is a no-no. It's been rectified. I hope. But it was a very anxious afternoon.

We're meeting with said spy, board member Mark McDonald, who lives two doors down this evening. He called the association rather than knocking on our door. Great guy.

UPDATE: Vlad met with Mark. It was very friendly and Mark said the association misunderstood his statement; he was only trying to save us from the headache of a redo. We're being grownups about it. On the outside.