Thursday, December 31, 2009
Day 16
After a couple of weeks of this, and if he's still healthy enough to stay out of the hospital, they will assess whether he needs more of this, or whether he can get some of it at home. Eventually, he'll be weaned off the IVs.
I don't know if they expect me to handle the IVs at home or whether a home-health nurse must do it. We'll just wait and see. Home-health trained me to do IV antibiotics in October after his chemo. But daily and multiple IVs may be more complicated.
After the hospital, we were going to swing by the Russian store, which is not far from the hospital, to get something for New Year's Eve. We decided to stop by Spec's and it turned out to be the one my friend Pat works at. We ran into him and he was a little surprised to see Vlad. We then hit 3 Brothers Bakery, then the Russian store and came home. I'm getting back to work after about a 3-hour break.
We can't go to our friends, the Nezhinskys, for New Year's because Sasha has a cold and Vlad can't be around that. Vlad's very bummed about it. But we're going to have a special dinner. And he got special dispensation to have a glass of champagne, though he'll probably drink a shot of vodka instead.
Tonight is a blue moon. It's the first blue moon on New Year's Eve since 1990. So enjoy it. And Happy New Year!
Tuesday, December 29, 2009
Day 14 - Free at last

Monday, December 28, 2009
Still reeling
Vlad is off the IV Tacrolimus and on the pill form. He's scheduled for a new central line that has 2 lumens instead of 3. These are sure signs he will be released tomorrow. Still, the doc has the last word in the morning. He's been drinking water like a fool. And on top of multiple IV bags of saline, that's not easy.
Before we get out of there, we (patient & caregiver) have to get "training" from different teams/departments. There are no appointments, you just wait for them to show up. I'm taking the day off tomorrow from work, but it's possible I'll be able to work some during the downtime if I can get a connection.
Gotta get back to cleaning up the house.
Sí, tengo gusto de ópera
Wow!
Day 13
Vlad slept OK last night. He's not nauseated this morning, but the jury's out on that until after breakfast, he said. He has some pain in his thigh and hip bones, but it's manageable.
The doctor hasn't come yet. He may prescribe Vlad the Tacrolimus in pill form today. Right now he's on IV Tacrolimus. If he goes to a pill, it's almost a sure bet he's headed home soon. (Tacrolimus is the drug that helps prevent Graft vs. Host).
Vlad's hair is falling out very quickly. He shaved off his beard yesterday because he woke up with half of it all over his black T-shirt. We may shave his head in the next couple of days if he wants to do that.
Sunday, December 27, 2009
Day 12
His numbers are fantastic: WBC 10.0 (!); RBC 2.82; hemoglobin 8.4; platelets 37; and neutrophil absolute count 7.80. He's doing beautifully. If he manages to avoid Graft-vs.-Host symptoms, he could go home this week. (Please knock on wood now.)
He's been given the OK to walk beyond the 11th Floor today, so we'll head down to the 2nd Floor Park this afternoon so he can enjoy some new scenery. He ate a big breakfast. I just took a shower while the IT nurse was here for the final "special changing" of his CVC dressing. It will go back to normal weekly changes in a few days.
Between doctors' rounds, the dressing change, shaving off his shedding beard, breakfast and political discussions while watching "Meet the Press," he's tuckered out and is napping as I write this.
Saturday, December 26, 2009
Perking up
We just went on our third walk and I talked him into sitting up at his computer for awhile. He needs to be more perpendicular this evening. And I just found the Rockets game on TV: Now we're talking.
I talked to some spouses in the family room earlier tonight. A man from Shreveport whose wife is in Day 15 and another man whose wife is in Day 76. Mrs. Day 15's white count is only .2 and Mrs. 76 has had a rough time with Graft vs. Host and has just one kidney. So there is much to be thankful for.
Mr. Shreveport told me he "fired my nurse" from last night. He asked the charge nurse not to assign her to his wife again. Both men said their holiday nurses were the worst they've had. I didn't say anything but Vlad's nurses -- Marisol, Katrina, Sheila and Elveera among them -- have been wonderful.
Mr. Shreveport had a bunch of apple juice he was trying to unload. It sounded good to Vlad (imagine that?) so he's drinking one of them now.
Day 11
But he's very groggy and his oxygen levels aren't wonderful. His lungs are not perfectly clear, and we're fighting him a little to get him to do something besides sleep. Around 8:30 last night, he got oxycodone, ativan and ambien at the same time; just like the night before.* But this time during the night his oxygen levels dropped really low. And he was very out of it. He tried to speak but he couldn't form words because he was so drugged out. He's been on oxygen off and on; but he keeps taking off the mask. Now it's like he won't completely wake up. I think it'll be OK eventually, but right now, things are a little anxious. (*UPDATE: Vlad reminded me later that he had been on oxycodone all day, whereas the day earlier he had not. This may have made the difference?)
He just got a bowl of Valiya's borscht. Then he got nauseated again, not from the borscht itself, but from eating something in general. He got some more Zofran to kill the nausea. I told him I'd give him 30 minutes to let the meds take effect. Now he's back sleeping hard again. I gotta wake him up and make him walk and do breathing exercises. It's gonna get a little ugly in a few minutes.
He shouldn't require the oxycodone tonight because he doesn't need any more Neupogen, the medication that stimulates the grafting and causes the bone pain. (He doesn't need Neupogen because his numbers are so good.) So I'm hoping this groggy bear phase will be over soon.
Friday, December 25, 2009
Day 10 - A sunny Merry Christmas!

Thursday, December 24, 2009
Christmas Eve
Day 9

Wednesday, December 23, 2009
Day 8

Vlad is feeling generally rotten today. His throat and mouth are starting to get the dreaded sores from the chemo. He's not in any pain, thankfully. And he's not hungry, but he ate some breakfast at my urging. He was going to take a short walk, even though his body is screaming at him to lay down and rest. They want stem cell transplant patients to fight the fatigue; it helps them get well faster and helps keep pneumonia at bay.
He is scheduled for a platelet transfusion today, as expected. His numbers are WBC 0.1, RBC 2.93, hemoglobin 9.2, platelets 11. He also had a blood draw from his arm, not the line, to measure how the Tacrolimus, the main anti-rejection drug, is doing. They may change the dosage depending on what they find in the blood. This happens every Mon-Wed-Fri while he's on the drug. He'll be on it for awhile.
He's also on IV antibiotics and I would guess also an antifungal and an antiviral, though I'm not certain. He also gets fluids with saline and potassium-magnesium. It's quite a tree of IVs. They all have them; all the patients on the floor. The nurses decorated one IV tree with green garland and ornaments. It stands by the elevators. Pretty funny.
Last night, I took up some snowflake lights. We spread them across the window sill. They look very nice. Also found some of those fake votive candles, with a light bulb that simulates a flame. Those were surprisingly the coolest thing. There's something very calming about candles. He has enjoyed them very much.
His skin around the CVC line got very red and a little infected a couple of days ago. The Infusion Therapy team has been changing the dressing daily since then. (Normally the nurse changes it weekly.) The IT nurse was hours behind because of emergencies but when she finally got there, she was awesome. Because I got "trained" in October on changing the dressing, I'm very interested in watching the real nurses change it. I'll be doing it again when he comes home. She did a more thorough cleaning than is usually done, it must have been an infection protocol. And she had some tips for us. She also said the sample culture is negative for bacteria so far. She was definitely worth the wait.
Tuesday, December 22, 2009
Day 7
Dr. Andersson said this morning he was doing very well and that he's very pleased. On the down side, his CVC line is a bit red, so they removed the plastic patch and the Infusion Therapy nurses are administering a presumably antibiotic cream for the site. It has a gauze patch for the moment. Line infections are a big deal, especially to the IT department.
Lana made Vlad some vinaigrette and Olivier salad over the weekend; it was very good, thanks! We got into Mom's chili, which is perfect for this rare cold Houston winter.
Thanks for your prayers and calls and good wishes. We are so thankful for everything!
Today's counts: WBC still .1; Red BC 2.81; hemoglobin 8.4; and platelets 17. Vlad's platelet "parameter" is 15, so no platelet transfusion today; probably tomorrow. (His platelet parameter used to be 20. I guess 17 is the new 20?)
Saturday, December 19, 2009
Winter wonderland
Day 4

Our dear friend Carol (in picture) stopped by with a plate of homemade molasses cookies (they are wonderful!) and a Santa toy, which brightens up the room. She was telling us about her recent adventures working with a caterer in Houston for the holidays. Too fun.
Vlad and I took a walk around the 11th floor and discovered the soda machine has disappeared overnight. It was in the family room, which already was without a microwave. So we were a little naughty and walked over to the other side of the elevators to see if there was a machine over there. (Vlad is supposed to stay on this side for now). It was gone, too.
Today's nurse, Loretta, doesn't know about it, but guesses it could be another cost-cutting measure. If they have to cut costs, better a soda machine than a doctor or a nurse.
Today's numbers: WBC = 0.1, hemoglobin = 8.2, platelets = 61, neutrophils/absolute = 0.08.
Friday, December 18, 2009
Day 3

Thursday, December 17, 2009
It's all good

He's been up all day without a nap. He might be bored; would be a good night to call. His room phone is: 713-834-9216. He's also on Skype.
Day 2

Today's nurse is Catherine.
Valiya and Sasha visited last night. Valiya took him Yan's fried chicken (Paula Deen's recipe) and potatoes au gratin (my mother's recipe). Vlad loved it. Valiya has another friend at MDAnderson, who is having chemo for some kind of cancer that's in her liver now. She lost an eye in the last couple of years to it. And she just had a baby. Some people need special prayers.
Mom and I stayed home and watched the Top Chef reunion, ate grilled cheese sandwiches and wrapped caramels -- the almost-as-good-as-Aunt-Hertha's caramels. She's trying to head out this morning but may wait till afternoon when the rain is supposed to ease up.
Wednesday, December 16, 2009
Day 1
The stem cells were very fresh yesterday, so they did not need the preservative, the DMSO, which is the stuff that makes the odor. So it was nice for him not to have an additional problem, albeit minor.
Today he will remain on Tamicrol and will get his first dose of Methotrexate, a chemo drug that aids in keeping Graft-vs.-Host Disease (GVHD) at bay. Methotrexate is used for lots of other ailments including rheumatoid arthritis, psoriasis and termination of ectopic pregnancies as well as many cancers. He hasn't started the Methotrexate yet, they're waiting on an OK from the doctor on Vlad's kidneys. It is hard on the kidneys. This worries me a bit; he was in kidney failure in March of 2008 when he went in for his first leukemia. We'll just have to see.
I chatted with some transplant spouses in the family room this morning. Their spouses were both Day 5. Their meds were a little different, but both were having trouble with coughing and body fluids. The man was in his pajamas. And the woman in her bathrobe. It's a little surreal around here from time to time.
He's snoring right now, like any other day. It's comforting.
Tuesday, December 15, 2009
Stem cell transplant complete


Day 0
It's on. It's scheduled for 10:30 a.m. It will take awhile to get through all the protocols, but Mom and I are headed to the hospital soon.
His counts: White Blood Cells 0.5; neutrophils 0.48; hemoglobin 8.4; and platelets 165. He is neutropenic.
He will get pre-transplant meds around 10 a.m., Benadryl and steroids. The transplant will have the same possible side effects as a blood transfusion, Jerusha said.
He's going to probably have an odd odor and taste in his mouth for about 24 hours because of one of the drugs, DMSO. It's been described as smelling like garlic or rotten milk, so lucky him?
They're also watching out for a side effect, which manifests as a heaviness in the chest. If it happens, they just slow down the infusion rate.
He's feeling pretty good this morning, despite his blood numbers. He is anxious, of course, but is being a brave puppy.
Monday, December 14, 2009
Day -1

Vlad is weak today but plugging along. I've talked to him three times. He has a bit of an appetite today, so that's a positive. He's got a 2 p.m. conference call via Skype with the company he's contracting with. I hope he doesn't push himself too much for that.
Sunday, December 13, 2009
Fever spike
They're giving him some Demerol, which I don't understand exactly, not being a medical professional and all. Demerol is a pain killer and I'm guessing also a sedative. Maybe they're just trying to get him to settle down a bit. He isn't really resting as much as he should.
He just called and sounded kind of excited and tired at the same time. He's a little scared; he's finally on this new road. Chemo was old territory, this is a completely new journey and the rhythms are unfamiliar. I wish I was with him tonight.
Mom and I visited for about an hour. Alex came in after us and then Liliya & Nieeliya came in kindly with tons of food that Vlad sent home with Alex. It's problematic to keep the food, much less eat it in his condition.
I took Mom to Sylvia's on the way home. I had the Southern Enchilada Sampler, or whatever it's called: the one with the mole enchilada. It was all really good. Mom had the chiles relleno that she liked, but didn't fuss over, so I think she'd have prefered Ninfa's, maybe. I love Sylvia's mole, and no one else in my immediate family can even stand mole of any kind. Sylvia was there; she's been there the last couple of times I've been. It's her newer location on Woodway, so maybe she's working really hard to make it go, or maybe she's always like that. She showed us to our table and filled our water glasses. The place has my heart.
Onward and upward.
More on the transplant: It's supposed to take place in his hospital room. A doctor will begin the procedure and nurse(s) will monitor the infusion. There is no specified time; it's dependent on when the stem cells arrive at the hospital. I am allowed to be in the room during this procedure, so I probably will be. I still don't know how long it will take. Stay tuned.
Day -2

Tuesday's the big day. The actual transplant, I believe, has all the drama of a blood transfusion. It may occur in his room, but I'm trying to sort that out now. We wonder if his new stem cells will arrive via helicopter?
His room overlooks the helipad, which is kind of cool if you're a little bored in your room. (Not cool if you just finally fell asleep after hours of trying). I haven't seen an actual takeoff or landing, but Vlad says it's pretty remarkable, and loud.
Mom arrived today around 12:45, about 10 minutes before I got home from the hospital/grocery store, which made things annoying for her briefly, though she is unflappable. We're going to go visit with Vlad presently.
Today's nurse is Max, originally from the former Soviet Union (Latvia) and currently from Sugar Land. He came in the room speaking Russian. He knows a lot of the same Russians we know. It was a lot of fun comparing notes. Very competent nurse and nice guy. We are pleased.
I'll update on transplant details as soon as I know something.
Friday, December 11, 2009
Day -4
Thursday, December 10, 2009
He's feeling better

We went to the "Allo" Discharge class today. It's for allogeneic patients - those with unknown donors. Those patients have the strictest followup because they're at greater risk of GVHD (Graft vs. Host Disease), the biggest problem with these transplants. (It's when the patient's tissues are attacked by the donor's tissues. It's different from rejection.)
There are a lot of rules. For instance, he shouldn't go to crowded places, be in the sun, be near any soil (including houseplants), no fresh/raw food, no visitors who've been immunized within 10 days. He'll wear a mask a lot. And sometimes gloves. This will be normal for months.
Today I met Jerusha, his daytime nurse. She's from Alvin, which is where Kathy, his nighttime nurse, is from. Jerusha is such an amazing person, as is Kathy. I've never witnessed such thoughtful nursing; it's such a relief, such a comfort, their presence just immediately calms me. I know he will be so sick soon and to have this level of attentiveness is going to make things so much more bearable for Vlad. And it will ease the stress on the family.
I tried to log on from his room this afternoon, but the wifi wasn't working. There's a lot of construction going on there and apparently from time to time this happens because of it. It never did work for me today; I left around 8:30.
He can take twice his normal dose of Ambien tonight and is getting an anti-anxiety med, I believe it's Ativan. His lack of sleep concerns Jerusha. I left relatively early tonight so he could sleep. It's hard for him; they start poking him at 3:30 a.m. with all the chemo stuff.
I found myself so sleepy today. I haven't been getting enough sleep and all the driving around and packing bags and keeping up with the house just gets to me I guess. I fell asleep in the chair at the hospital and had a hard time waking up. Now, I'm going to bed for real.
Day -5
Wednesday, December 9, 2009
Nurses' luncheon
Day -6

This morning he is very tired and sleepy. He said he feels "weird," which could just be his lack of sleep. It's really too soon to start feeling the chemo effects. He's also uncomfortable with the room's temperature. It's too cold then too hot. If he can, he will sleep today.
Last night Alex was with him and he ate some of Lana's chicken cutlets and some noodles.
I'll go up tonight and we'll watch the final episode of Top Chef. (They do have Bravo at MDA.) Vlad and I agree this season: we're cool with Kevin or Bryan winning. We think Michael has behavior issues unbecoming a TV chef. (I just went to Bravo's TC site and found this game: Match the chef with the tat!)
Tuesday, December 8, 2009
Day -7

He had a productive day on his translation project. And he had them hopping on repair projects: a slow drain, a broken blind and worst of all, a broken bed.
Alex is visiting tonight.
Monday, December 7, 2009
In the room (*updated)

(*UPDATE ROOM/PHONE #s) Vlad is in Room G1140. His direct line is 713-834-9216. He got his first dose of chemo about 5 a.m. today. It was a test dose of an experimental drug. They're monitoring him for side effects. This drug (Busulfan) can cause seizures, but his nurse, Kathy, told me she'd never seen it happen. Kathy is awesome, by the way. Tuesday he has no chemo. But Wednesday-Saturday he gets it every day. On Saturday he starts getting pre-transplant drugs daily that are designed to make his system agreeable to the new cells. Tuesday (Dec. 15) is the transplant, what they call "Allogeneic Stem Cell Infusion."
That is also known as Day 0. Today is Day -8. When patients talk about their progress, they talk in days. They'll say, "I'm Day 135, what day are you?" There is a lot of time in waiting rooms, so there are a lot of patients comparing notes. It's really cool to learn from others who've gone before. Or to help others behind you. Or to just have the weight lifted spending time with others in your situation. If you just pass by, you see sadness. But if you live it, you see a lot of joy in the people.
I talked to him via Skype this morning and he felt fine, but sleepy. He'll try to catch a nap between blood draws. He's up for visitors if you're game. No sneezers or coughers and no kids under 13. No flowers. No fresh fruits and vegetables. Use Parking Garage 2, and Elevator F.
The following links offer a lot of information about what Vlad's undergoing. I published these on GoogleDocs and I have to give you permission to see them. E-mail me if you can't see them and I'll give you permission, if I can figure out how.
What is a stem cell transplant?
Allogeneic Stem Cell Transplant
Sunday, December 6, 2009
He's checking in
It's a weird feeling. It's a necessity, yet not easy, to remain this side of hysteria. Several people have called and e-mailed in the past couple of days. Thanks to you all. Your prayers and stories of faith are a comfort.
We're headed down there soon. He'll have to be admitted first. No telling how long that will take.
Love to you all
Wednesday, November 25, 2009
It's back
Sunday, July 19, 2009
Oops, I forgot the last chapter!

Vlad has been in remission for more than a year and out of chemo for 10 months. All is well!
It's a blessing to have a reprieve. But as many of you know, it's also a special hell being a cancer survivor. Every ache and pain, every fever, every "off-day" you may feel a little uncharacteristically tired, that voice returns: "Is it back?"
After the well-meaning M.D. Anderson bone marrow specialist (important to note he is not a leukemia specialist) scared the crap out of us, and we spent a couple of months in testing limbo, including sending a kit to Tanya in Odessa, which was held hostage for $50 by enterprising DHL thugs there, we got a second opinion. From his oncologist.
Dr. Conlon had a different take on things. Whereas Dr. MDA said a relapse would mean limited options, as in no more chemo ever and no chance of a bone marrow transplant down the road, Conlon said very politely, hogwash. He went so far as to say a bone marrow transplant at this time is probably not a good idea, although he said there are two very educated schools of thought on that subject, and no one knows who's right as of yet.
Bottom line: No bone marrow transplant at this time. Exhale.
As a result, Tanya has been here with us in the United States since March 28. She only got the visa because of Vlad's illness. So you gotta wonder if there's bigger wheels turning in this whole thing. Especially when you know their story, which is basically an updated Russian novel.
As sweet and frothy as Vlad and I's first few years of marriage were, the past couple of years have been heavy, with our cancer/hurricane year (bad stress) and our year with Tanya (good stress).
But that's the way it goes. Life goes on.
I don't plan on updating this blog again. I'm closing this chapter, praying the book is done.
Thanks for everyone's prayers, good thoughts and deeds. A special shout out to my brother, Bill, who always came on a moment's notice, and the Nezhinskys, who brought food and love almost daily, and were fearless when things were really bleak.