Thursday, November 29, 2007

Day 20

Not much new to report. Just hanging in there.

The counts are bouncing around a little. The white count got a little low yesterday, so they gave me a Neupogen shot. This morning the white count shot way up. I'm not used to such a big jump from just one shot, but this is new healthy bone marrow. Platelet count has been very good. The APN (advanced practice nurse) told me that the platelets were a more reliable indicator at this point. So that is good news.

The magnesium is bothering my stomach. I thought it was the residual effect of the chemo that was continuing to bother me, but now it's pretty obvious that it's the magnesium. The effect is a sour, almost nauseating, stomach. They will be putting me on the pill form next week which is even worse. So we have to find some antidote to this stuff.

No signs of GvHD or other problems.

Switching gears, that was good news about Tech firing Gailey. If the AD is serious about giving John Tenuta (defensive coordinator) a shot at becoming the head coach then we won't have a decision on a new coach until after the first of the year. Tenuta will be the interim head coach for the bowl game which will likely be the Humanitarian Bowl (oh boy, what excitement) in Boise on December 31. A couple of other would be candidates are coordinators on major bowl bound teams which play their games the first week of January. So that leads me to believe that no decision will be made before January.

My oldest daughter is going to MBA school at Tech and has a class with one of the football players. She quizzed him a little about the coaching situation. Apparently some players are not sad at all to see Gailey go. That would account for a few things and games.

Saturday, November 24, 2007

Day 15

I got out of the hospital on Wednesday. I'm dog tired because of the sleep deprivation that goes along with a hospital stay. The most sleep you get is a 2 hour nap, that includes nighttime. Between all the fluid that they pump in you causing you to go to the bathroom and the nurses waking you up to check your vital signs, you just don't get to sleep. As a result it takes a few weeks to catch up. I can fall asleep now at the drop of a hat.

I'm currently in the ATC clinic which is where I will go every day for the next couple of weeks. Yesterday I got my last round of Rituxan for awhile. Today I'm just getting magnesium.

The anti-rejection drug, Tacrolimus, strips the body of magnesium which is an important element for the bone marrow. So I get magnesium pumped back into me. They will start me on magnesium pills soon, too.

My blood counts have zoomed up since engraftment. I would call it a very strong response. Now we play the waiting game. Waiting on the chimerism test on Day 30 and GvHD. Some GvHD would be indicative of the new cells fighting the disease. The problem is that too much GvHD can be deadly. Hence the close monitoring of the Tacrolimus level and the daily trips to the ATC clinic.

Well today is the big day - the Tech - Georgia game. I just don't see Tech having much of a chance in this one. But I would have picked LSU over Arkansas, and Texas over A & M. So what do I know? The Arkansas game was one of the best I've ever seen. Arkansas is 7 and 1 in overtime games now. And they have played in the two longest games. Oddly, the Arkansas fans want to get rid of Houston Nutt, the coach. Maybe we could arrange a swap for Gailey. I would still like to see Bobby Johnson of Vanderbilt get strong consideration for the Tech job.

It's unusually cold and rainy in Houston. No snow, though. LOL

Tuesday, November 20, 2007

Day 11 - Getting Out Tomorrow

My white count went from .4 to 1.8 to 11.5 today. So that's good enough for them to declare that engraftment has occurred. I'm stable in other areas and they want to get as many folks out of here for the holiday as possible, so I get to go "home." Home for now just means the Rotary House hotel, but I'll take it.

The red counts came up today also. So the Aggie blood is working on all counts.

Next big hurdle is the chimerism test on Day 30 which will tell what percentage of the red and white cells are generated from the donor. We want those numbers to be up in the 90 percent area.

Of course, there may be some GvHD (rejection issues) which will have it's own set of hurdles. GvHD can be deadly. That's why they keep you here for a while longer after getting out of the hospital.

Nothing but good news for now. Prayers and Aggie blood are working well. Keep up the good work.

Monday, November 19, 2007

Day 10 - Go Aggies!

Well, well, well, I do believe I am engrafting.

My white count was up to 0.4 yesterday. That's not a big number, but off the floor enough to be noticeable. Then yesterday afternoon, my back began to hurt - the proverbial bone pain kind of hurt. It continued to kill me through the night, requiring a little "happy juice." Then this morning the white blood count (WBC) was 1.8.

The doctor said yesterday that if the count was up to 1.5 today I just might get out of here by Thanksgiving. So I will be negotiating to that end today when he makes his rounds. The absolute neutrophil count has to be 1.5 and you have to be stable in all other areas before they discharge you from the hospital, so I still have a way to go. The neutrophil count will settle out to be about 50% of the overall white count. So I'm looking for my WBC to rise to 3 or better to punch my get out of jail free card.

My donor is an Aggie, if you didn't get that headline.

Saturday, November 17, 2007

Day 8 Drawing to a Close

Whew! It's been a rough three days, but I started feeling better this afternoon. Apparently the chemo tore up my stomach lining. It also blistered my face, so my face is now peeling.

I'm now running a low grade fever which is very common when you go for a week with no white count, so they have started me on IV antibiotics. Although they do run blood tests to see if they pick up any bugs, it's pretty much a shotgun approach - fire at everything and hopefully hit the right thing.

I suspect I'm not going to feel a whole lot better until the donor cells engraft and start to grow some white cells, probably in about a week.

The nurse is about to hang a second bag of blood on my IV tree. Hemoglobin was down to 7.1, so that didn't help. But two bags of blood today should make me more energetic tomorrow.

How about Bama getting beat by UL - Monroe! Maybe the ugly win by Tech today will finish off Gailey's tenure. I was disappointed that Vandy let TN come back. Georgia's on a roll. The Tech game will be uuuuugly next Saturday. Maybe that will finish off Gailey. He's Tech's answer to Jim Donnan.

Thursday, November 15, 2007

Day 6

Today has been a little rough. My stomach has not felt good all week, but today it's worse. It's not causing me to throw up, but it's just bloated and hurts at the top of the stomach. So I'm taking antacids and the like. Hopefully it will be better tomorrow, but I sure have been a couch potato today.

My white counts are down to just about nothing at 0.1. I'm getting red blood and platelet infusions just about daily. My marrow is just about dead so it can't produce any white or red blood. So as those components die off naturally in the bloodstream, they have to be replaced in the bloodstream to keep me safe. Well, the red blood and platelets can be replaced, the white cells cannot be. Infusions don't affect the marrow; it just puts someone else's blood in me for a temporary fix. When I engraft, then the new stem cells will begin to make new components on its own. That will take a few days after engraftment. Engraftment is when the new stem cells find their way to the marrow and "take hold." Stem cells usually reside in the marrow and don't float around too much in the peripheral bloodstream. It takes them a while to find where they are suppose to be.

I got a card from my donor. Guess what? She's a rabid college football fan. My kind of gal! She mentioned the school and colors in her note in the card, but the sensors scribbled through it with a pen. They do enforce the one year of anonymity. At least they tried to, but I figured it out after staring at it for awhile. She's a Texas A & M Aggie fan. That's okay - I can deal with that. LOL How about that Susan and Robert? All in the family.

Thanks for all the thoughts and prayers for full engraftment.

Saturday, November 10, 2007

Day One

Yesterday was a rough day. I got the stem cells starting about noon and finished them about 6:00. But the chemo from the previous week caught up with me, so I was a little under the weather. Luckily, the benadryl through the IV knocked me out much of the afternoon and evening.

This morning I feel better. The nausea has died down and the old body seems to be shaking off the chemo a little.

Last transplant I engrafted on Day 12, so I have a week or more to just hang out and wait for that to happen again. They tell me that I haven't seen the last of the effects of the chemo. So I could have a few more rough days ahead. We'll see. I'm just going to make a few laps around the floor and watch some football this afternoon - no surprise there.

I did so poorly with my predictions last week I hesitate to go on record with more this week. But, what the heck. I'll take Tech over Duke, that's safe enough.

What about Auburn at Georgia? The visiting team wins this one a lot. So I'll go with Auburn.

Arkansas at Tennessee? Arkansas looked sharp against So. Carolina last week, but I don't think they're consistent enough to do it again. Vols in this one.

Clemson over Wake. VT over FSU. Florida over So. Carolina, but there is the Spurrier factor there.

Miami in an upset over UVA. UVA just can't keep winning games by a single point. And this game is in Miami.

Ohio State over Illinois in Columbus. I don't think the Buckeyes will let this one slip away.

Friday, November 09, 2007

Friday - The Real Day Zero

The cells didn't get here yesterday in time. They were suppose to be here on a flight that arrived at 7:50 last night. But later they told me they wouldn't be here until 1:00 this morning. So that put off the infusion of the cells until today. I haven't heard a definite time yet and it's 10:15 Houston time. I'll post more tonight or tomorrow.

I feel better today from the effects of the chemo, but my white count this morning is 0.0. The reds are still hanging in there a last gasp effort by my old marrow.

Thursday, November 08, 2007

Day Zero Is Here

Although that still depends on how quickly they can harvest enough stem cells from the donor and the travel time to Houston. They transport the cells by medical courier from the donor's collection center to Houston. The courier literally gets on a plane with the cells in an Igloo cooler and brings them here. The cells probably won't be here until this evening.

Sometimes it takes two days to get enough stem cells, but with a healthy donor one try should be enough. Last time I received about 8 million stem cells, which is a good quantity, but it still just looks like a baggie full of blood.

The last two days have been heavy on the chemo. Day before yesterday kicked my tail a little. I had a case of the "shake and bake." That's where you get uncontrollable chills and shakes from the inside out followed by a high fever. Not fun. It took them a couple of hours and meds to get that under control. Yesterday was better, but a very full day still. Today there is no chemo, just a few laps around the floor and the stem cell infusion. I feel pretty good this morning, maybe just a little green around the gills.

Monday, November 05, 2007

Day Minus 3

And things are still going well. It's 1:30 here and I'm finishing up my first dose of something called Thymoglobulin which is the main ingredient in the cocktail that will kill off my bone marrow. I'll get two more days of this, increasing the dosage each day.

They started that off with IV Benadryl which knocks me right out. So I'm just now waking up and getting coherent again today. Sleeping through as much of this as possible is not bad. It can be rather boring. I'll perk up here in another hour or so and go walk a few laps.

Tomorrow will be my last doses of Etoposide and Cytarabine. Both of those are chemos that kill leukemia and lymphoma. I'm sure at these doses they also help to kill the marrow.

As far as I know, we are still on track to get the donor cells on Thursday. That really depends on how long it takes to harvest the cells from the donor and how long a plane ride it is from the donor's collections center.

Alan, all I can say is "Woof, woof." At least the pups know how to win a few games. Heck I might even convert if we keep Gailey. What am I saying?! Obviously still delirious from the Benadryl.

Thanks to everyone for the thoughts and prayers. Our next big hurdle is the degree that the door cells engraft. That will be measured at Day 30. We need a reading in the upper 90's.

Saturday, November 03, 2007

Day Minus 5 And Things Are Going Well

I got my Etoposide (pronounced e - top' - o- side) early this morning and I'm now getting Cytarabine. I'll get these twice a day for next four days. I've learned over the years to dread anything that ends with -bine. But I'm also getting stuff to prevent the side effects. Kytril is the anti-nausea medicine. They are also standing by at all times to give me something else if needed. They don't want you to be sick or uncomfortable so they are pretty free with the meds.

Other than a little boredom things are going okay. I walked several laps yesterday and will add to that today. Last transplant I was doing 15 to 20 laps a day. Each lap is 2/10 of a mile, so I was getting in a few miles a day. I also brought some free weights this time to work on the arms. I intend to come out of here in as good a shape as possible. It will help significantly later on.

Luckily today is football day, so that will break up the boredom a little.

I was obviously too optimistic with my pick of GT Thursday. But I'm willing to go out on a limb for a few picks today.

The big one in the SEC, of course, is Bama vs. LSU. Saban has done a remarkable job at Bama, but I still like LSU. LSU had last week off to prepare and heal, so I think that gives them the edge. Plus, Saban is still playing with his predecessor's players, so the talent pool may not quite as rich there. But, still Bama has had a great year and this game will be close. But I'll take LSU 28 -21.

South Carolina will handle Arkansas. The Hogs quarterback is banged up and the coach is under fire. Moral won't be strong for Arkansas. South Carolina still has a lot to play for and will win this one easily even though it's in Fayetteville.

I'll take Wake over Virginia, too. Virginia won three close ones and then lost to NC State last week. This game is in Charlottesville, but I think Wake is the better team by 10 points.

Vandy at Florida could be interesting, but I doubt it. Tebow should be healthier this week. I like Bobby Johnson, Vandy's coach, but I'll take the Gators by 14.

The next to the best game of the week will be out west with Oregon at Arizona State. I'll take ASU and Dennis Erickson. They seem to have handled the same opponents as the Ducks but by more margin.

UConn should handle Rutgers, but there's no way that UConn is a top 20 team. What a joke.

BC should handle FSU. Michigan will beat Michigan State as usual.

And Oklahoma will kill A & M. Sorry Robert and Susan, but that won't be a surprise. Can I interest you one slightly used coach, aka Chan Gailey? Hey, he can't be any worse than Francione.

Friday, November 02, 2007

Started Chemo & Tech Needs A Coach

I started chemo with Rituxan, actually a monoclonal antibody, last night. This morning I got Carmustine, which is part of the BEAM regimen. It is a drug that kills this kind of cancer cell. The Carmustine wasn't too bad. It gave me a little headache at the temples and made the back of my nose inside burn like when you walk outside on a 25 degree day. But neither side effect lasted long.

Tomorrow I get Etoposide and the dreaded Cytarabine. I've had Cytarabine before. That will start the slide of all the blood counts. Since the goal of BEAM is to wipe out the bone marrow, I know my counts will necessarily go way down. So blood and platelets will be in my immediate future.

They are going to replace Campath with Thymoglobulin because Campath can cause mixed chimerism. Chimerism is the mix of donor cells and original cells. They measure chimerism for the myeloid (red) cells and the T cells (white cells). Last time I got 100% donor myeloid cells but the donor T cells failed to take over. I still have 100% of my first donor's blood type, A+, but very little of his white cells. So I have what is called mixed chimerism. Campath is a drug that is effective against CLL, my original disease, but it can contribute to mixed chimerism. It is also effective against GvHD. So it has some positives, but the top priority is to get the T cells of the donor to take over and kill my disease. Thymoglobulin is a substitute for Campath in the fight against GvHD.

The transplant is still on for next Thursday, the 8th, as far as we know. Today is Day Minus 6.

After Day Zero we will be hoping and praying for 100% donor T cells at day 30. Actually at the 30 day mark anything above 95% is good. It will eventually build to 100%. Last year my T cell chimerism was only 67% at day 30 and 12% at day 60. This year they are completely wiping out my bone marrow, unlike last year. So with a complete ablation like this, how can the donor cells not make it to 100%? It seems that the only two options would be 0% and 100%. 0% would be a complete failure which they would follow up immediately with a second, emergency, infusion of donor stem cells. If it's possible to fall between 0% and 100% they might get some mature lymphocytes (mature white cells instead of stem cells) immediately from the donor and supplement the transplant with those. We actually tried four DLI's (donor lymphocyte infusions) from the first donor, but they didn't help fast enough, getting the chimerism up to only 37%, and then the disease roared back in April and overwhelmed the transplant.

I missed my prediction of the results of the football game last night badly. VT came out with an on side kick early, thereby claiming the element of surprise which Georgia Tech so badly need. We seemed to be playing on the back of our heels the rest of the night. We just got out coached again. It's time for a new coach. I don't mind losing games, having been a Tech fan for so long, but at least we should play like we have a plan to try to win the game.

I vote for Bobby Johnson at Vandy to replace Gailey. I think the writing is on the wall for Gailey. Apparently the fans booed him roundly most of the night. I hate to see that since, after all, it is just college football. The booing is bound to affect the morale of the players. But when college coaches make well over $1 million a year and more than the presidents of the schools, they have to expect to take some heat from the fans who are paying those big salaries. Time for a change. I'm not impressed with Tenuta on the defense either. He has only one approach, blitz. That's okay when it works, but when it doesn't work, you have to alter your game plan - not something Tech does well under Gailey. We're a one dimensional, predictable team. When you have limitations like Tech has always had, you have to be a little more creative. How about a little wish bone or a shovel pass now and again?

'Nuff said. Thanks for reading.

Thursday, November 01, 2007

November 1 - Day Minus 8

It looks like we are finally on schedule. My blood counts on Monday in Atlanta were okay and still okay Tuesday night in Houston. I saw Dr. Hosing yesterday for the final check and will go into the hospital tonight. They will start the BEAM regimen to kill off the bone marrow Friday morning. The donor cells are suppose to be infused next Thursday, November 8.

We had the pleasure of going out to eat with our friends Terry and Linda from Pennsylvania Tuesday night right after we got here. Terry and I went through this process in 2006. He got his stem cells on August 8, so coincidentally he will be 15 months post-transplant on the day I get my 2nd transplant. We spent much of that summer here trying to get everything lined up for our transplants. The delays that I had this summer are not unusual as we saw in 2006. We had another crony with us then, too, Merlin Cohen whose wife, Janie, was undergoing treatment for a very stubborn melanoma. So we three hung out together some.

Even though going through this process and disease is not fun, you do meet a lot of very nice people. I keep with Terry and Linda, Merlin and Janie, and John and Anna from Austin fairly regularly. I would not have met any of them if I hadn't been here, so there you go. Janie is doing very well, as is John. Now I have to catch up with them. They are all inspirations to me.

Terry has gone through some pretty rough skin GvHD but looks like he's got it under control now. A couple of years of GvHD is not unusual apparently. Terry got ahead of me so I get to pick his brain about what to expect.

Terry and Linda, it was great seeing you. Enjoy the trip to Arizona and the warm weather. And congratulations on a successful transplant. Keep up the good work.

Merlin is a dentist turned sculptor, by the way. Check out his website at www.merlincohen.com. You won't be disappointed.

How about a little football now? I'm going to go out on the limb here and predict Georgia Tech over Virginia Tech tonight on ESPN in spite of the fact that GT is without their top two running backs.

Here's my logic. Florida had a week off to get ready for KY after KY had a tough game against LSU. Georgia knocked off Florida last week after they had a week off and UF had the tough game against KY. Now GT has had 5 extra days to prepare for VT, while VT suffered a real tough loss to Boston College last Thursday night. So by extrapolation I'm liking GT's chances.

Chan Gailey without his running backs will be forced to be creative, which is so unusual that Frank Beamer won't know what to do. I think GT will run the fullback, throw to the tight end and use a little razzle dazzle. He's just got to. We also have a Tim Tebow (UF's quarterback) kind of freshman quarterback in Josh Nesbitt who will get plenty of playing time taking the snap and running up the middle.

The defenses are comparable, both tough as nails. Neither team will get more than one offensive touchdown. I like GT's chances with our place kicker. In fact field goals may be all we get. So I think we win by a low score of 9 to 7, 10 to 7, or maybe 12 to 10. Look for a defensive struggle with a few trick plays. The winner may be the one who scores with special teams or on defense.