Day -5: Radiation Over, Chemo Coming

Warning, there's a rated R section coming up in today's post. I'm trying to be somewhat complete in documenting this process.

I'm writing this in between today's two radiation doses. So far, no side effects other than some throat dryness, and an occasional stomach pain that might be mucositis. In other words, it's like a mouth sore, but it's in my stomach.

That can be an issue. Bland foods, which is what I was told to start eating today anyway, and anything soothing to eat is okay. Biotene actually has a dry mouth gel that it's okay to swallow. I've been using it already, but I'll probably swallow just a bit on purpose for my esophagus and stomach.

I also found a throat lozenge with pectin that is just soothing.

The goal is to prevent all the mouth, throat, stomach, and intestine linings from drying out when the chemo starts destroying all the mucus that is supposed to be in there. It'll all come back, but for a couple weeks, that's one of the most painful side effects, even though it's not really dangerous (I don't think) unless it leads to infection.

This Is the R-Rated Part

So I go in this morning, and Dr. Tenenholz, the radiology oncologist, says, "There's one thing I forgot to tell you about. Sorry."

That didn't bother me. They're treating me. I'm okay with it. I'm easy to get along with.

He then explains that one place that leukemia cells like to hide out, where you don't notice them, is in the testicles.

"Uh oh!" I thought.

He hadn't forgotten to mention it. Way back in October, he mentioned that, the first time I met him. He probably forgot. He's the doctor. I'm the guy who was told that they would want to point radiation right at his testicles, making sure to tape back another body part to keep it out of the way.

I definitely did not forget, though I was hoping he would.

I'm definitely not going to blog about that procedure afterward to explain how it's done (nor is my wife going to take any pictures for Facebook!). I have no idea where they do it nor how they get that huge machine pointed just where they want, but I'm not going to explain any of that (for which I'm sure you all are glad). So I'm describing it now so I never have to describe it again.

It causes instant sterility, which the doctor said doesn't matter because the total body irradiation has already caused sterility anyway. (No problem there; we're done.) And, uh, just in case you're wondering, as my wife and I might, it doesn't cause any other related problems.

Anyway, I have to go through that right after the last dose of total body irradiation. Modesty issues make me want to ask to be put to sleep for that procedure, but I'm not going to. I'm just going to face the shame of it all. It would be a lot easier if I was 12 months old and in a diaper! I'm sort of out of the innocent nudity stage; I'm out of the Garden, and I like the fig leaf when I'm in public ... or with doctors in a hospital room.

Another Hospital Stay Change

The doctor told me this morning that I'm definitely not getting out the day after the transplant, which is Tuesday. He said I'll be in the hospital 16 days or so, and that was while he was forgetting that I'm a cord blood transplant. That will probably add another week.

Oh, well. I really don't mind the hospital stay. I wouldn't be able to see my friends or kids anyway until my blood counts come back up. I have my computer, and the hospital bed is really great on my upper back, which requires a lot of massage. (I really need to make those videos on taking care of your lower and upper back. I've done a lot of study on it, and they'd be free.)

Day -6: Steroids and Still Going Strong

We're getting up around 5:30 each morning, then leaving the apartment at 6:45 am. I get anti-nausea meds and fluids at 7:15, then radiation at 8 or 8:30. Then we talk to the doc briefly, go home for lunch and a nap, or we stay awake and get things done (like blogs and emails and house cleaning).

It's a 15 or 20-minute drive to Vanderbilt. We go back at 1:00 pm for more meds and fluids, get the second dose of radiation around 2:30, then go home. My wife does all the driving. She has me banned from driving now that the radiation has started, though she's often tried to ban me from driving over the last six months.

Admittedly, most of that was justifiable.

Tomorrow's the last day of radiation. Friday morning I check into the hospital before 7:30 am to begin getting the chemo. I'll stay there until Wednesday morning, the day after the transplant, when they'll determine my condition and decide whether they can send me home or not.

Steroids

I haven't slept at all since my nap yesterday. I laid in bed for hours last night. It was restful, I was tired, but for all the thinking, praying, and daydreaming I did, I never came close to going to sleep. I finally gave up at 3:30 am, got up and started on next week's Through the Bible blogs. (I love the start of Matthew!)

The fact is, though, that all that laying down did the job. I've been fine all day long.

I thought maybe it was some weird side effect of the radiation, but the nurse and doctor told me today that it's not the radiation; it's the steroids they've been giving me to help me handle the radiation.

So tonight the nurses have provided a solution that worked for me the one time I tried it in the hospital. It's a combination of Benadryl and Compozine (sp?). We'll see how that goes. I don't want to stay awake several nights in a row! I literally didn't sleep a wink!

Worse, I have a couple games of "Chess with Friends" going on my iPhone, and one of them is really tough. It's a great game, and I'd love to pull it out. Staying awake all night isn't going to help me do that!

Exercise Plans

My daughter will feel a little better about her double-jointed picture on my blog the other day. I'm paying myself back for her.

My wife sneaked a video of me doing some exercises in the hospital room today. It's embarrassing, but I'll let you see it, thus giving my wife permission to put it on Facebook, which she was avoiding because it was clear it embarrassed me some.

That's not to say that she didn't send it to all my friends and show it to the doctor as well!

Here it is, and then I'll explain what I'm doing:

It's look like I'm doing Tai Chi, but I don't know how to do Tai Chi. I'm just using the Tai Chi I've seen as a mold.

Here's the point. Sink down in a low squat or horse stance and stay low, even when moving. (A younger guy who hasn't been repeatedly poisoned over the last six months could go a lot lower than me.) That works the quadriceps and buttocks.

Then, just having fun and doing whatever Tai Chi things I can think of, I strongly tense my stomach, and as I turn, I put all my effort in my core muscles to make each turn of my upper body.

Finally, when I extend and retract my hands, I'm not training for punches, nor am I gathering Chi, though sometimes I use "gathering Chi" hand motions. I'm tensing and working specific muscles.

I have another week in which I'm not supposed to lift anything heavy. This sort of exercise makes up for that without blowing out the Hickman Catheter on my upper chest, which is still leaking blood slightly (which is normal).

The idea of moving with the muscles tensed, working against each other, is what was behind the old Charles Atlas "Dynamic Tension" exercise program, which was advertised in comic books when I was a kid in the 60's and 70's. Do any of you remember those comic book commercials where the bully kicks sand in the face of the 99-pound weakling? Then he takes the Charles Atlas program, comes back to the beach buffed out, and punches the bully? (The ad can be seen here.)

I figured it out from a little poking into the basis of the system when I was a teenager. I think I found an interview with Charles Atlas or something. It doesn't work near as good as weightlifting (except for beginners), but it does work.

The Radiation and Chemotherapy

The total body irradiation isn't affecting me right now, though I'm taking strong measures to prevent problems I've had in the past. The nurse and the doctor were quick to tell me today, though, that the chemo will hit me like a combination of both the radiation and the chemo. It will bring them together.

That's not my plan, though. My plan is to experience some fatigue from no blood, live off transfusions (gotten 30 units of blood or so in the last six months; thanks to all those who donated!), and to intensively hide from all germs for four weeks. Then I'm going to get better, throw up occasionally, and run a 5K in the summer, a half marathon in the fall, and a marathon in Sacramento in 2013.

Lord willing.

Day -7 Results

I only have a little time to write this. I have to get to bed. I failed at sleeping last night due to nervousness. My concern tonight is excitement!

Thank you for all your prayers. Today was easy. Very easy.

Somehow, I had in mind that I was probably going to be leaning on my wife's shoulder, trying to make it from the car to the apartment without throwing up on the sidewalk. Instead, I'm doing as well as I was doing two weeks ago before any radiation at all.

I think it's your prayers. Thank you.

Fun Stories

The nurses—two female, one male—told me that I could bring a CD to listen to.

Unlike the brain radiation, the TBI (Total Body Irradiation) takes about 20 minutes, if they're not doing measurements and checking out the lung blocks they made for me. They shoot me for about four minutes from the front, stop for 15 seconds to see how I'm doing, then shoot me for about four more minutes. Then they turn me around, set me back up in the contraption, and do another two 4 minute shots.

It's really boring, and the contraption is not comfortable.

Anyway, I brought a CD in the afternoon. It's Peruvian Indian music, mostly drums and pipes, that I really like.

As it turned out, one of the nurses had recently purchased the exact kind of pipe they were playing, planning on learning it. It got her inspired, and she said she'd quit putting her lessons off.

A little later, they were trying to set up the lung shields—lead patterns like what you'd use to stop Superman's x-ray vision—and it was taking a while. They had called in the techs who built it to adjust it on its mounting plate and to compare it to the x-rays of my lungs.

The male radiology nurse was just hanging around while the techs fiddled around. I told that nurse that the music made this sound like a movie.

He said, "Yeah, it really does."

I said (though this isn't true, but it was good conversation), "When the machine's on, and you're all out of the room, and the music is playing, I can imagine I'm in a South American dungeon as a prisoner. I think, 'I'll never talk!' over and over again, and it passes the time."

He started laughing and said, "You'll never get any information out of me!"

So then it was the nurses' turn to fiddle with the shield. They had to mount it on the contraption, adjust its height and its distance from my chest, and the male nurse was handling the x-ray screens so they could see exactly what the shields were blocking.

So while they did that, I interrogated the techs who build the shields.

The shields are either 1 and 1/4 or 1 and 1/2 inch thick. They're a little smaller than my lungs because they are a foot closer to the machine than I am (and I'm about 14 feet from the machine so the x-rays can spread out and hit my whole body, including my feet). The techs explained that they actually design a mold from the x-rays of my lungs, and then they pour molten lead themselves. The shields are designed specifically for each patient, then melted back down, and the lead is used for the next set of shields.

They won't use the shields until the second TBI tomorrow.

Oh, they have to make one shield for each lung AND another set for when they're irradiating me from the back.

They lined up both of those today, which made for a sore rear end sitting on that bicycle seat, but it will be better tomorrow because the shields are all set up.

Tomorrow I hope to bring a couple history CD's to listen to while they irradiate me. That will definitely make the time pass quickly.

Finally, the stem cell transplant clinic told me that I'm definitely going in the hospital on Friday for the chemo. My guess is that I'll stay through the Tuesday transplant, then, if all is well, be released on Wednesday to recuperate at home, though with daily hospital visits to check my blood and provide me with platelets, blood, nutrients and minerals, medications, and tests so that they know how much of the immuno-suppressive drugs to give me.

Um, finally again. All my blood counts were worse than last week, though only slightly worse. It might be the brain radiation I had, or it might just be that my body can't make blood well any more after all these treatments. It's not going to take much for this TBI and chemo to drop my white blood cell counts to zero; they were headed that way anyway! My white blood cell count is running about 1/3 of what was normal for me in my previous life.

My wife insists that we will find out somewhere along than the line that my dropping blood counts are exactly the best thing that could be happening to a transplant patient prior to the conditioning regimen and that God is making everything work exactly the best it could be.

I believe her.

Thank you to all of you again!

Jerry and More Answers to Prayer

Oh, and thank you for praying for Jerry. He was pretty sick today, but nothing like what could happen to a transplant patient. Remember, even on a reduced intensity chemo and no radiation, his chances of surviving the treatment were no better than 80%. That's surviving. He didn't just survive the treatment, he practically coasted through it. No fevers; no hospitalization.

The mines have not been kind to Jerry. He has lung problems and back problems. The chemotherapy and the leukemia have not been kind to his liver. His liver enzymes were elevated more than mine (and mine have dropped completely back to normal.).

But he's cruised through this.

He's had a lot more people praying for him than just you who read this blog. Thanks to all of them.

Day -7: First Day of Total Body Irradiation

Okay, I admit that I woke up at 2:45 am, tossed and turned for 45 minutes, then finally acknowledged I was (just a touch!) too nervous to go back to sleep. So I got up, did Friday's Read Through the Bible in a Year post, and answered emails.

It's 5:38. I have to leave for the hospital in an hour. I'd better go get ready.

My wife reminded me that I already have a picture of the contraption that I'll be in for the total body irradiation. There's a bicycle seat I'm sitting on there.

Day -8: Getting Ready for the Home Stretch!

I added another blog to my blogroll today. It is a Christian lady who is facing a stem cell transplant as soon as they find a donor. She's doing a lot better getting matched than I did, so she'll be using a "matched unrelated donor" rather than a baby's umbilical cord and placenta, like I am.

Her blog's encouraging and delightful.

My Update

I got my last brain radiation today. It was no problem. I had a small bit of fatigue in the afternoon, probably not as bad as many of you face who get the "after-lunch blues." Otherwise, nothing, not even any nausea.

Tomorrow, we'll be leaving the apartment by 6:45 a.m. I'll show up at the stem cell transplant clinic, and they'll give me anti-nausea drugs and a big dose of fluids, about as much as they can pump into me in half an hour. Then it's downstairs to the radiology oncology clinic for my first dose of "TBI," Total Body Irradiation.

I'll try to get a picture of that for you.

I have to sit on this bicycle seat, which allows me to bend my legs just a little, then hold onto two handle for support. No back to this one-legged stool with a bicycle-seat top.

It takes about 20 minutes to give me TBI, including the time needed to turn me around at the halfway point.

That will happen around 8:00. When I'm done, they'll give me a time to come back six hours later. There has to be a six hour gap between the two doses.

We'll do that for the next three days.

Tomorrow, it will be one week exactly until the transplant. I think I get admitted to the hospital Thursday after radiation so I can get the weekend of chemo and then the actual stem cell transplant on Tuesday. I'll be released the day after the transplant.

I think.

Jerry

We had German chocolate cake with Jerry and his wife today at their apartment. It was fun.

Apparently, the doctor gave Jerry a "hey, you made it" comment today. Basically, he said it was smooth cruising from here. Jerry's got a slight rash on the right side of his face, but the Graft-vs-Host is under control and looking good.

That came from his excellent blood counts. Everything is in the normal range except his red blood cell count, which is around 3.8 and should be over 4.1.

I would have been jealous had he already been in the normal range on the red blood. Some transplant patients don't achieve that for over a year. Right now, I can't get normal on anything. Everything has settled in on low to almost dangerously low, and it's not getting better.

We're replacing that broken system next week (and basically burning it to the ground this week).

Nashville

We've been talking about possibly staying in Nashville after the transplant. This free apartment, donated by the American Cancer Society and Open Arms (and which the apartments provide at half price to those organizations), is available to me until April 30. (Thank you to those organizations!)

We believe that the church is supposed to be a whole lot more than an organization that people "attend." We believe it's supposed to be a family, quite literally, for those without families, and that Christians are supposed to put Christ, his church, and his people even before their mother, father, and children. Jesus said that directly a few times, so we're just taking him at his word.

Anyway, we like to help Christians come into the wonderful power and joy of that unity, and we were hoping we might be able to do that in Nashville when this is all over. We've even had a family from back home at Rose Creek Village offer to come out and help with that.

On Saturday, I was having coffee with one of my favorite people here, whose name is Dan. Dan informed me that he owns and rents houses as a side business.

As it turns out, he happens to own a 7-bedroom, 3-story house that is basically two houses in one. It has two kitchens, at least two living rooms, and a bathroom on every floor. It's right in our price range, though it's an old house that doesn't have central heat and air.

I could hardly believe it.

Maybe that's an open door. We have a couple (younger) families out in California doing the same thing, and God provided a house that they can share as well, just today. That's a lot more amazing in California than it is out here in Nashville.

Anyway, we're excited about that, too.

Okay, on to the big push tomorrow. Thank you for joining me on this journey and for your prayers!