Thursday, December 31, 2009

Day 16

Vlad survived his second day of outpatient infusion therapy. His numbers are stable; the white cells are edging back down, which is normal and good news. The daily drill now is to go to the clinic, have blood drawn, then report to the outpatient IT clinic where he has a little room with a bed, phone and TV. They load him up on saline and magnesium (he's always low) and they wait for the blood test results to see what else needs infusing. Then about 3-4 hours later, they let him go. So I drop him off down there in the morning, head downtown to the office and a few hours later I go pick him up and head home to finish my shift from home.

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

Look Ma! No IVs!

Vlad was released this afternoon. Dr. Andersson made rounds late today, after noon and remarked that Vlad's early release approaches a record! He's out 8 days early. He's thrilled to be home.
Vlad and Max

Leaving M.D. Anderson Hospital!

He will be going back daily for outpatient therapy for a few weeks. Tomorrow he sees his clinic BMT doctor, Dr. Alousi. As long as he's healthy, without fever and showing no signs of graft-vs.-host he can stay home. We will watch over him.

Monday, December 28, 2009

Still reeling

Ran by the hospital on my way home from work and picked up two overnight bags filled with clothes and stuff, plus a shopping bag filled with more stuff. And that's not all the stuff, ha!

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

Our friend Carol just e-mailed this. It's fun. It sums up how I feel today: Opera fixing to burst out any second!

Wow!

Dr. Andersson just told Vlad if he can prove he can drink a gallon of water a day, he'll release him tomorrow!

Day 13

This morning's numbers have mostly edged up: WBC 10.7; RBC 2.67; hemoglobin 8.2; and platelets 48.

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

Sunday in The Park with Vlad

John visits Vlad in The Park on the 2nd Floor of the hospital.

John dropped his girls off at Hermann Park before visiting. Anna had decorated his sweater with shiny stickers.



Day 12

Vlad's feeling much more like himself today. The groggy bear is gone. He got a CPAP machine last night, like the one he uses at home, which helped him sleep much better. Plus his pain has dissipated: No more Neupogen to stimulate his marrow, which is painful, and his mouth sores seem to be improving as his white cells multiply.

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

Vlad's perking up, although it's taken most of the day. He has a mostly indescribable nausea/heaviness in his chest that won't go away. Swallowing is now officially uncomfortable. He's eaten very little today and winces every time I try to think of some food that will sound good. He ate 1/2 of a cutleta for dinner and two bites of mashed potatoes. That's as good as it's going to get.

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

It's a mixed report today. Vlad's numbers are great: White cells 3.4, red 2.79, hemoglobin 8.4, platelets 25.

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

Party time

Valiya and Yan with our new puppy, courtesy the volunteers.

Vlad and his favorite son.

The instant hot chocolate in my stocking is very interesting.

Who was that masked man?

Day 10 - A sunny Merry Christmas!


It's a beautiful, clear, crisp and cool Christmas Day in Houston. The doctors made their rounds a little after 8 a.m. Vlad is doing very well. His numbers are coming up quickly and the doctors were very impressed. It's a great Christmas gift.

He had some nausea after they left. Marisol, his nurse, gave him some Zofran for that. He's sleeping very well now and probably will sleep for some time. He didn't sleep well last night. Before bed, he had hip and thigh pain (the marrow thing) that on their 1-10 pain scale rated a 12, and he's not a wienie about pain. He was maxed out on pain meds, one of which was oxycodone. This morning his pain has subsided. He managed to eat breakfast, an apple turnover, one of his favorite foods ever, which was last night's dessert.

The IT nurse came around 9 to change his dressing. She was awesome. She's originally from Barbados. She's a longtime nurse and I marveled how she could tell me her stories like it was the beauty shop and yet never let her sterile right hand become contaminated.

I saved the Christmas stockings for today. I went out to the car to get the bags that my mother so lovingly put together with the stocking stuff. When I got back, he was too sleepy to do anything. It's good he can sleep.

I had breakfast downstairs. The hospital volunteers are all setting up a huge buffet for patients and caregivers. People like that give you hope. When I walked out into the lobby a man was playing the piano beautifully. It was "Here Comes the Sun." It really moved me, with the sun shining in and the words floating through my head, "Here comes the sun, doo-din-doo-da, here comes the sun, and I said, 'It's all right ...' "


Thursday, December 24, 2009

Christmas Eve

Lana visited and brought borscht.

Vlad in the afternoon.


Alex and Christmas dinner.


Vlad managed to eat much of the special meal.


Logan's Farm ham (awesome), Sister whats-her-name rolls, green bean casserole and mashed potatoes. No ambrosia this year; we're boycotting fresh fruit.


Presents!

Day 9


Aloha from G1140 on Holcombe Boulevard! (Skype snapshot of Vlad this morning)

Vlad is feeling better today than yesterday. The mouth sores are starting to build. And yesterday his thighs ached. That is because the stem cells are starting to graft into the marrow there.

Dr. Anderssen came by this morning and said Vlad is exactly on schedule. It was a Goldilocks moment. The doc said he likes to see "on schedule" progress, rather than too fast or too slow. The doc ordered some more drugs. Vlad's getting an injection of Neupogen today, one of a series of injections, I believe, to help the grafting process. He's also getting an IV pain med to be named later. He's back on the "Magic Mouthwash," which is a topical pain reliever - it has lidocaine and something else - and does bring him relief, especially before meals.

It's Christmas Eve and Alex and I are going up this evening. I'm going to attempt to work and cook a small dinner (I bought a nice Logan Farms ham last night) and haul it and presents to the hospital. I think it will be worth it.

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

Thank you, Gail

From our friend Gail in Florida.


Cat in jacket sleeve @ Yahoo! Video

Day 7

Sorry I'm behind in the blog, and everything else! Vlad is feeling pretty blah, but that's not a bad thing in this situation. He has kind of a lump in the back of his throat that annoys, but doesn't hurt. Dr. Andersson said it's a chemo side-effect, it's some kind of inflammation of the throat/esophagus that, if it bursts, would become very painful. He advised Vlad to swish/gargle often with his baking soda rinse and otherwise protect it from opening up.

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

Couldn't resist posting pics we received today from our friends Karla and Peter in Tennessee. They live in the Smoky Mountains and got 10 inches of snow as of today. I have (sort of) after and before photos below.







Day 4

Vlad is still feeling pretty good. The rotating transplant doctor, Dr. Andersson, came by and seemed kind of happily surprised by Vlad's lack of side effects. He was with the young Dr. Landau, who I believe is a fellow. We saw Dr. Landau in Dr. Jabbour's office weeks ago. Now I see Dr. Landau everywhere, even in the parking garage. It's kind of funny. Today, he was asking about our computerage. He has a netbook, like mine, and loves it, like me.

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


Vlad is still feeling only blah. His numbers today: White cells 0.1; hemoglobin 7.6; platelets 82. The hemoglobin number was crazy-low, so they gave him a blood transfusion around lunchtime.

He's in pretty good spirits. Max stopped by yesterday; he's a floating nurse and was working on another floor. He went over Vlad's numbers and reassured him that everything is going very well. Max, 61, was a physician in the former Soviet Union. The education didn't translate here. He went back to school, to the University of Texas, and got a nursing degree; he's an R.N. now. He's been in Sugar Land since '90.

I'm going up tonight and will spend the night. Vlad put in his order for chicken noodle soup, chili and potatoes. I bought two new food thermoses at Target a few days ago. There's no microwave in the SW pod on 11G, and walking hot soup from the NW pod is tricky. (Borscht droplets look like blood on the floor - that's got to be some kind of faux pas, right?) So I thought: A thermos! I got two at Target the other day. I'll put them to the test tonight.

Thursday, December 17, 2009

It's all good


It's 5:30 p.m. and Vlad is still doing pretty well, all things considered. Alex went by after he got off at 2 p.m. for a visit. He talked to some friends in Ukraine today, mostly about the crazy weather they're having over there. Tons o' snow (Pictured: Deribasovskaya Street in Odessa.)

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


Talked to Vlad about 8 a.m. via Skype. He is experiencing diarrhea, but that's the worst of it. He had been up since around 5, when they awakened him for his vitals. He ate a big breakfast. And now he was sleepy and headed for a nap.

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

He had a good night; I took Mom home and came back to spend the night. He slept well and had a couple of minor fever spikes overnight, but for the most part it was happily uneventful.

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


Alex came for the last couple of hours of the infusion. In the bottom photo, you can see the big, fat tube is empty, as is the bag it feeds from. It ended around 4 p.m.

Vlad was very tired through the ordeal, but did not have any symptoms of a reaction to the stem cells or any of the meds.

Since 4 p.m., he's developed some severe shivering, but does not have a fever. Jerusha says because he's been infused with a huge amount of liquids, his body is confused and dealing with it. Also, because all that fluid is room temperature, his body is trying to warm up, thus the shivering. His temperature is expected to spike, and it is creeping upwards. That is normal.

If all goes well, he should be fairly asymptomatic the next day or so until the chemo side effects catch up with him. It will be the usual, they say, nausea, hair loss and mouth sores.

He ate some borscht today and enjoyed it. He also ate a big breakfast. It's about 5 p.m. now and he's finally nodded off to sleep.

Mom's gotten a bunch of Christmas cards done while we've sat here. We took a brief tour of The Park on the 2nd floor and bought some stocking stuffers at the Volunteer Gift Shop.

We'll keep you posted.

Photos from Day 0

Vlad and I around 11 a.m.; the infusion began at 10:50 a.m.

Wireless troubleshooting

Mom checks e-mail



Jerusha monitoring vitals every 15 minutes early on. See that big red bag? That's the stem cells.
Giving the finger -- the one for measuring oxygen levels.

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.

Max is back today; that is a comfort. Jerusha is off today, so she may be his nurse for the actual transplant tomorrow.

Mom went to the grocery store to buy supplies for all the food she's going to make and freeze for us. She's also making us candy for sharing during the holidays. She brought her Christmas cards with her, too, so if you haven't gotten your card from her, rest assured, it's in the works. :)

And Valiya is on her way to the hospital this afternoon with chicken cutletas and potatoes for the patient. I'm going up about 3 with some borscht that Nieeliya made.

Vlad asked the doctor about tomorrow's schedule. Everything depends on when the stem cells arrive. The doctor said even he doesn't know where they're coming from. If they're from the U.S., they'll arrive earlier and the transplant infusion will most likely be in the morning. If from Europe or beyond, it could be afternoon or later.

We'll keep you posted.

Sunday, December 13, 2009

Fever spike

Vlad just had his first fever spike, which is expected. It was 37.8 (100.04), which doesn't seem terribly high, but he had bad chills and sweats.

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

Vlad's doing OK, feeling nauseated off and on for the past couple of days. His chemo has ended and he has started his rabbit proteins - aka anti-thymocyte Globulin (rabbit) - which is an anti-rejection drug that helps keep the donor bone marrow from reacting with Vlad's immune system. There's a big risk of allergic reaction, so they are monitoring him closely. He got his first dose Saturday. Monday's will be the final dose, which will be 8 hours of IV infusion. (But not followed by carrots; that's just an ugly rumor).

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

He got some rest over night, fell asleep around 10 p.m. But this morning he's nauseated again and having a hard time going back to sleep, despite medication, which includes Benadryl. (Who doesn't conk out after taking that?) Anyway, he's going to try to catch some Zs. That is the No. 1 goal today.

Thursday, December 10, 2009

He's feeling better

Vlad's nausea is strongest in the morning after the chemo. He didn't eat much today; he was feeling some nausea this evening, but ate some dinner anyway. One of his awesome nurses, Jerusha, said the chemo will hit him pretty hard around Day 5 of the transplant and that he would be over it around Day 10. That's a long ways off. Seems strange to be so far down the road.

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

Vlad feeling sick this morning. Chemo was still dripping at 7:45 a.m. He's hoping to get some sleep today.

Wednesday, December 9, 2009

Nurses' luncheon

The nurses on G11 did this for the patients. Vlad had said earlier he was nauseated, but his plate (bottom) shows he's at the very least being optimistic later in the day.




Day -6

Vlad had his first round of pre-transplant chemo beginning at 3:30 a.m. He was awakened more than hourly all night between that and answering nature's call. He's hydrated to the max, I think.

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

Vlad's test chemo went without a hitch. He's got some pain from the central line and another temporary line in his hand. That one is for blood draws for the research project. They came at regular intervals to draw blood samples.

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.

Thanks to Pat for the Bubba Santa pic. What a scream!

Monday, December 7, 2009

In the room (*updated)

Alex and I took Vlad to M.D. Anderson last night. He got into the room about 7 p.m. He's in the main stem cell transplant wing; there was a chance he would have to be on another floor and it concerned him. But all is well.

(*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

M.D. Anderson just called; his room will be ready at 6 p.m. We were in the middle of making and freezing chicken broth and fish soup for his month-long stay. Vlad, Alex and I had pelmeny for dinner. We're getting ready to go now. He's 95% packed.

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

Vlad's leukemia is back ... Bone marrow transplant scheduled for Dec. 15. I'll be back to write a proper entry soon. Happy Thanksgiving!

Sunday, July 19, 2009

Oops, I forgot the last chapter!


It occurs to me I need to update this blog.

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.