My dear Carol

My dear friend, who visited Vlad last December at M.D. Anderson, has been in the hospital herself with a devastating lung infection. She was in ICU for about 3 weeks and had some kind of brain event last weekend that has apparently affected her profoundly. The doctors say it's possible she could improve. Only time will tell.

I'm very sad today. I can't help but think about all the years we've been friends. We go back to 1979, NTSU. 31 years. We were roommates off and on through the years. We had ups and downs. She always has been a delicate flower, not the tough girl everyone knows. She is lovely.




Update: Saw Carol yesterday at the hospital. She appears to have paralysis on her left side. She responded by opening her eyes when I talked to her. She looked at me it seemed. But she struggled to keep her eyes open. It's impossible to make any conclusions. Time will tell.

Vlad, the baby

The fact we haven't updated this blog in some time, as you may suspect, is basically good news. Vlad is, knock on wood, continuing to do well. We try to remember he is still not 100%, but he does his best to let us forget.

I say Vlad, the baby, because last month (June 15 was 6 months) he got his first round of vaccinations, the same, presumably, that 6-month-old babies get. He had 5 shots in one day: 2 in each arm, one in the derrierre. He came home looking like a fish, nearly unable to move his arms from his sides. He became slightly sick, like a mild cold, in the days afterward, but never got to a fever stage. It was undoubtedly a normal response to the vaccinations. Still a little scary.

In Houston, we had one of the coldest winters in at least 25 years. It snowed 3 times. The following spring has been one of the most remarkable. More wildflowers than usual. And more hayfever. One pollen season blends into another and it's still going on. So it's hard to know who's "really sick" and who's just having an allergy attack. Including Vlad.

We're not going to travel because Vlad doesn't have vacation, and he needs to avoid crowds as a rule. He can't really be out in the sun much. He can't swim. So we've kind of decided to just take little mini-trips when the mood strikes us.

Besides, we've been busy getting the house together. We finally got a new couch; we were without one since Alex moved out early this year. We got rid of some furniture. Got some old furniture back from friends who borrowed it.

Vlad plays poker almost every weekend. I play occasionally. We got a new Dutch oven from Le Creuset with our Visa points. We've been having fun cooking in it. We're foodies.

We've had more layoffs at the Chronicle, so my professional life is difficult. There's a word. I work almost exclusively on news, four long days a week. I dont' know how long things will continue this way. What I'll be doing 6 months from now? News? Gardening? Sports? Or will I be laid off too? This roller coaster is all the excitement I can handle; who needs a vacation?

Love to you all; happy summer!

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.

Day 50

Left the house at noon today for work. Ricky and the crew were heating up their lunch in a microwave on the flatbed plugged into the portable generator. I told my coworker Kathy about it and she said the crew working on her house today were doing the same thing! Trend in construction crew culture? We still don't know where they pee. Sorry, but we're wondering.

Day 49

Vlad was at hospital most of the day with infusions and whatnot. It's routine now.

I had to work at home because we're getting new siding on the front of the house. Four workers banging on the house all day. And they had to turn the water off for awhile. I'm glad the freeze killed most of my plants because I don't think they would survive this. It looks like a war zone out there. I've never seen so much scaffolding in such a small area.

And they're all day screaming at each other in Spanish. It sounds like they're arguing. I. Hate. Arguing. Just like Russian. The Russian spoken at dinner parties always makes me nervous. It sounds like they're saying, "Shutup! You're a stupid cow! Why don't you just do us all a favor and leave!" And what they're actually saying is more like, "Pass the mashed potatoes! I am crazy for them!"

At one point the garbage truck came. The folks across the street are moving out and they're begging the trash guys to take the couch and the La-Z-Boy and the coffee tables. And these trash guys are crushing them up. (They took our old water heater a few years ago, much to my surprise. It sounded like a large animal dying when they crushed it.)

Anyhoo, here's our guys with this huge Crew Cab pickup and a very long t-neck flatbed trailer. They're blocking 3 driveways, and trash. Between them and the garbage truck, there is no access or egress for anyone else. My cat's wandering around, children riding bikes in and around the mess.

And our crew leader Ricky's trying to get the trash guys to take the construction trash. Ha! They wouldn't. Ricky says it's cool; he'll take it. I'm thinking, yea, you will, it's in the contract. They all pile in the pickup and I open the gate for them. Then the trash foreman Martin comes over to apologize about not taking the 4-foot-by-6-foot plywood sheets and the wood siding. He introduces himself and gives me his elbow to "shake," apparently this being the etiquette for garbage workers. So I shook elbows with the lead trash dude today.

It was the most remarkable trash day ever, if you don't count water-heater day.

Vlad got home just as this surreal cloud of characters from a Fellini film was floating off beyond the gates. Then he grabbed some sour clementines to return to Kroger, where a day earlier they overcharged him by $2.60 for 2 avocadoes and he had to wait in line to get his money back.

"It took me five minutes to shop and 30 minutes to wait to pay and then get a refund," he said, annoyed.

Then he went to HEB to get more clementines. For now he can eat fruit only with a thick skin. Bananas, clementines and avocadoes. So he's pretty serious about it.

He went to bed early. He was pretty tired. That's the biggest thing. Everything else is just amazing.

Day 44 - 100%

That's the amount of donor blood in Vlad's system. What news could be better? None. :)

Day 43

Volodya continues to do well. The problem these days is to slow him down. He feels pretty good and tends to overdo it. He'll suddenly hit the wall, like he did last night, and there's nothing to do but put him to bed. I've asked him to do nothing today but sleep and putter. Will he listen? Stay tuned. :)

We're still waiting on those final results. His daily numbers are normal-for-now in that they wobble up and down a bit. It'll be awhile till they're back to a real normal.

Day 37

Illustration: Bone marrow, Gray's Anatomy

Vlad is doing very well. He got preliminary results from last week's bone marrow biopsy that show no evidence of leukemia. That's great, but it's not definitive, so no exhaling at the moment. The doctors are really wanting to know if the blood that's circulating inside Vladimir is his or the donor's. That we don't know yet. If his donor had been female, and/or had a different blood type, it would be easier to tell. But he was a man with the same blood type, so it's a more complicated process to determine. I hope we get more results tomorrow, but you just never know.

He feels pretty good, but tires easily. His CVC line is prone to bleeding more than any of the others. Maybe it's the way he sleeps on it. We have to watch it a lot.

Alex moved out of the house last Sunday. It's kind of sad not having him around, although I must say I don't miss the thermostat wars! We gave them our big couch, which they kind of wanted. So we're sans couch right now, which is interesting. I always hated that couch anyway. We're looking for leather now. There seem to be a lot of Super Bowl leather couch deals right now. A couple of stores are throwing in giant TVs with their football specials. Enticing, that.

Day 31

Yes, the absence means good things. Vlad is doing well. He's a weaker version of himself but is able to do many things.

He goes to MDA three times a week for now. This week it was Tuesday, Thursday and Friday. On Tuesday, he saw Dr. Alousi, who said he was ahead of the curve, but seemed slightly concerned with some of his numbers. On Thursday he had his bone marrow biopsy (Day 30). Vlad does his infusions at home on the other days. Today's numbers: WBC 3.8; RBC 3.87; hemoglobin 11.6; platelets 105; absolute neutrophils 2.24. Decent numbers.

We've quietened the social life because it kind of tires him and it throws off the rhythms that make the new normal work. There may be poker Saturday night. (This is a low-key game, not much drinking, only one of them smokes. He could handle that.) And Sunday at Nezhinskys for dinner.

Day 26

Vlad's doing well. He's wondering why he's still losing weight when he eats so much. He's feeling tired but all's well today.

I, on the other hand, had a violent 12 hours of food poisoning (I assume) on Saturday. I'm thankful it wasn't flu (and not contagious), but I'm still a bit wobbly today and am not getting the truckloads of work done this weekend I had envisioned. Alex ran out last night to get me Gatorade and bananas. By 4:30 a.m. it was over and hunger woke me up with big roar. I ate a banana, very slowly, some Gatorade and went back to bed.

Looking back, the only suspicious thing I had was a yard egg in which the raw white was too congealed to be fresh. I figured if I cooked it hard enough, it would kill any bad stuff, and I cooked it to death. That may or may not be the culprit.

Vlad canceled his poker night with Vika and Vassily, which we both hated to do. But I think it was just as well; he really wasn't ready. He went to bed early, and aside from helping me from time to time, slept hard all night.

Day 24

Vlad continues to get stronger and feel OK. He's still pretty weak, but he's able to work on his contract gig and fix a sandwich and change the battery in the smoke alarm, etc. Pretty soon, he'll be back in full honey-do mode. :)

He saw Dr. Alousi this morning at his MDA appointment. Alousi is happy with Vlad's better-than-usual progress. He got his saline today, had his Tacrolimus adjusted (to about half of what he was taking) and he's added an antibiotic that targets pneumonia, which is a common side effect. Plus with this crazy weather (3 days of lows below freezing: extremely rare for Houston -- goodbye hibiscus!) they probably are being cautious.

He's still taking the magnesium chloride, which, strangely, is the same compound being sprayed on Houston roads to keep them from icing.

Today's numbers: WBC 4.1; RBC 3.71; hemoglobin 11.3; platelets 175; and absolute neutrophils 2.39. Awesome.

He also agreed today to be in yet another study; this one on bone density. There's a known osteoporosis problem with some stem cell transplant patients. He's going to be taking Boniva in the study. That's the "one little pill" that Sally Field advertises.

Day 23

Vlad is shaving. That is all.

Day 21 - Crunch time

Mom laughing last summer while cooking pork tenderloin sandwiches.

Today, her left arm is broken in two places, above her wrist. She fell off a ladder taking down Christmas decorations. My sister, Suzanne, took her to the ER this afternoon. She sees an orthopedic surgeon tomorrow for a followup. She says she's OK and will heal to cook pork tenderloin sandwiches with that arm another day. But it's a fair guess she'll be in some pain tomorrow as the stiffness sets in. Hang in there, Mom!

Vlad is doing well today. He administered his own saline infusion today and even flushed his own lines with heparin. He's becoming quite the nurse. He goes back early tomorrow. We're headed for bed.

McVodka

Vlad sent me this in an e-mail. I don't really get it. But I don't judge. :)

Day 20

They told Vlad it would be a crazy day at MDA. He got there at 9:15 a.m. and just got into the room for his infusions. (Almost 1 p.m.) Wow. He's taking it in stride. I just hope there are no more significant wrinkles today.

His blood numbers I don't really understand: WBC 3.1; RBC 3.52; hemoglobin 10.6; platelets 208; abs neutrophils 2.02. I don't get why whites/reds are going down but hemog & platelets continue to climb. Maybe we'll figure out why.

*UPDATE: His leash is loosening again; he doesn't have to go to the hospital tomorrow. He's going to get a pump to take to the house so he can administer fluids to himself! He goes back Wednesday, but he's also off of his hospital tether this weekend! They're going to put him on oral magnesium. And if his absolute neutrophils fall below 1.5, he'll get another dose of Neupogen to stimulate the marrow again. That is all.

Day 19

Things have settled into a new normal routine. Vlad goes to M.D. Anderson every morning to have his blood tests and have fluids infused, usually for 4-5 hours. I drop him off and pick him up. On New Year's Day, I went to work downtown during his time. It worked pretty well. Saturday I came home and slept. Today, I came home and did chores. Karina, my sweet cleaning princess, came today to do the stuff I hate, namely floors and bathrooms. It helps take the edge off the mountain of stuff that piles up during such times.

Vlad is doing very well (knock on wood). His numbers continue to be normal (which is to say they move around a lot, but so far not into a bad area). He has not needed any transfusions and he's so far avoided infections (please knock on wood again). This schedule will continue for another week and a half. Then whatever they decide will change things again, we hope that means he can get fluids at home.

Oh, and he shaved his head. It looks awesome!

New Year's Eve we Skyped the Nezhinskys and toasted them "virtually" with champagne, which was pretty amusing. We had a little bit of food on the table. New Year's Day, Friday, we ate black-eyed peas and our friends Lana and John stopped by with takeout food that was tasty.

Saturday, I hit the farmer's market and got some satsumas and yard eggs. Then got more groceries at Central Market. We finally have groceries in the house. Then last evening, Linda and Terry came from Beaumont and brought a whole New Year's dinner with them: a divine roast pork, cabbage with sour cream and caraway seed, black-eyed peas with pico de gallo, and the most amazing corn bread. We had a lovely feast.

Today it's been nose-to-the-grindstone with laundry, work, dishes. We're going out to eat tonight; it's been a long time since we were able to do that. Happy New Year, indeed!