Thursday, November 08, 2007

He Ain't Heavy...
I've debated for a while whether I should write about what I've been going through this past month, but I figured I should because I had problems finding any personal web-logs about the donation of stem cells to family members; I feel I need to share. I'll return to my usual, ephemera based blatherings soon.

To begin with my older brother was diagnosed with Non-Hodgkin's Lymphoma about two years ago. He's been fighting a valiant fight with it having gone through every conceivable sort of treatment, including radiation and chemo. Earlier this year they did a stem cell transplant using his own cells, however his own cells were damaged and although they got rid of his tumor, he had contracted Leukemia because his immune system was basically destroyed.

A couple of months ago I was asked if I would undergo tests to see if I was eligible to be a stem cell donor for him. Of course, I said yes.

It's not until you are in the middle of medical emergency that you realize how amazing science is. This procedure would take my stem cells which produce white blood cells and infuse them into my brothers blood system, from there they would find their way into his bone marrow and begin producing white blood cells which will kill all of his damaged cells and the leukemia. Thus giving him a new immune system.

After a battery of intensive blood, heart and lung tests, Which in itself was extra-ordinarily suspenseful. I mean, I was tested for everything from HIV to the West Niles virus. I had a scare when they thought they saw something on my lung and they thought it was pulmonary fibrosis (see death of Robert Goulet). It was just some fat that attached itself to my lungs. Note: Exercise lungs more. But Whew... I was approved.

We then had to wait for my brother to get well enough to go through the procedure. It was touch and go for a while. Then when it was time to do the procedure, the insurance company was balking at trial drug that the doctor wanted to use. This held it up another three weeks.

Last week I was told that everything was go and I would start the shots I needed on Friday.

Friday: As a donor the first thing that had to happen was that I needed to create an excess of stem cells. Nupergin, is a drug makes your body increase the number of stem cells and forces them out into the blood stream where they can be collected with a process called Apheresis. The first shot was given to me by a nurse a the hospital. I hate shots, I can't even look at them in the movies. It's funny the things you don't know you can do until you are absolutely forced to do them; I think that giving myself two shots of this stinging medicine every morning defintely goes on that list. But I just put put on some Hendrix and pretended I was back stage at Monterey and popped myself one. Soon I'll be dating Kate Moss.

One of the main side effects of this drug is extreme body aches and headache, very much like having a flu. (This is why you hurt when you have flu you have white blood cells coursing though your blood stream). I was a little achy on Friday but I figured that was just in my mind because they told me that it would take at least 24 hours for the drug to start taking affect. However, every little twinge was noted as the beginning of the string of side effects that I read about in the much copied print out they faxed to me.

Saturday: I woke up feeling weird, but I didn't hurt. I was a little panicky about how I would feel because Bric-a-Brac was scheduled to play at the Olde Towne School of Folk Music for three hours. (The show went great, by the way, with an extremely enthusiastic crowd; We even got an encore! It was a blast.) I got through the show, with only minor body pains. I even walked the six blocks home. This was a bad idea because I was fine about half way when I had to resist the urge to sit down on some one's lawn and go to sleep.

Sunday: I woke up feeling o.k. My lower back hurt and my ankles. Around 4 that afternoon, the shots finally kicked in and I felt dizzy and really restless. My back ache was now a full fledged pain. I felt like I needed to get out of the house, but then when I would go for a walk I was so stiff that I felt like I wanted to lay down. I fell asleep around 7 and woke up again around ten. Exhausted but completely awake. One of the many side effects is insomnia. I relaxed into know I wasn't going to sleep and decided this would be a perfect time to watch those movies I'd gotten at the dollar store and never thought I'd watch.
I started with Les Demons, a Jesus Franco film about horny nuns who become witches. Lots of blasphemy all around with masturbating Mother Superiors and naked nuns. (So much for my piety). Then I watched The Oval Portrait, a Dark Shadows want-to-be Gothic about a haunted portrait of a woman. It was a strange hybrid of Canadian movie directed by a Mexican director. I tell you when you don't fall asleep during something like this you know something is wrong. Then I pulled out something called "Going Steady" or Yotzim Kavua An entry in the popular Israeli Lemon Popsicle series about horny Isreali teenagers during the 50s. It was harmless, naked fun. Sort of an American Graffiti but everyone looking like a young Marvin Hamlish. Well that finally did me in... around four in the morning.

At 7, I was woken up by the sound of people dropping bags of cement over my head as I remembered they were still fixing my roof. A project which is taking longer than the reconstruction of the El platform last summer. My crazy Korean landlord came knocking at my door a few minutes later saying that they couldn't get something on the roof and they had to take it through my apartment on my enclosed porch and through the hatch. At this point I can only say, "Whatever"

For the next four hours Latino workmen trampled through my house carrying cement pylons, while my landlord came up to me every few minutes asking me for something they needed, my vacuum cleaner, pens, knives. I expected any moment I would be up on the roof pouring tar. I had though to move all the Women's Household's and records off the porch so they wouldn't get trampled. My body pains getting worse and it hurt to sit and I was too tired to stand or walk. I felt like I could feel the stem cells taking over my body, seeing them as floaters in my eyes. I was looking forward to the apheresis to take them out of me to stop the pain.

Tuesday:

I was told to be a the hospital at 8 in the morning. I left my house at 7 thinking an hour would be more than enough time to get there. But traffic was terrible. It was after eight when I got there. The nurse said to me: Well you finally made it, we figured you changed your mind. They were expecting me at 7. I was then chastised for eating an Egg McMuffin on the way in, too much cholesterol, and for having and Alka Seltzer the night before, Aspirin thins the blood. So I was off to a great start.

How the Procedure is Done: First a big sharp needle was put in my left arm near the bend, that is where the blood would be taken out of my body and then passed through the chuga-chuga machine where the stem cells would be harvested. Then another needle was put in the top of my right arm for the blood, sans stem cells to be put back. I was given stern warnings about not bending my left arm because the needle would either break off or tear the vein leaving it useless. The right arm I had some movement, but I was told to keep it down as much as possible.

There was a problem right away with my blood coming out of my body. There was a spasm that was caused by the amount of pressure my vein could take. The nurse told me that the procedure would take much, much longer than they had anticipated. If they tried to turn it on full the needle would start to slip out of my arm. I was told if it came out than the procedure would have to start from the beginning and they would lose the collection. There was a scary moment near the end where this almost happened after six hours.

So one arm was completely immobile. The other arm allowed me to put in DVDs. (Thanks to Dave (Dot's Diary) for lending me his portable DVD player. I was surprised that they didn't have more amusements for the donors. Just a small color TV that got local stations.) I pondered long and hard before I started this what I would bring. It couldn't be too something that was too involving because I wouldn't be able to concentrate on it. And it should be light fare. I narrowed it down to Here's Lucy, Bewitched and Colombo. I started with Bewitched, which was perfect. Breezy, fun, and just enough room for not really caring what happened. Colombo was a bit too complicated, I discovered. When you are in a uncomfortable state it's hard to follow even the simplest of plots.
After three hours of the process my left arm began to hurt, really bad. I told the nurse and she said that it was normal, they gave me Tylenol for it but that didn't help much. What made it worse was that I knew I had at least three more hours to go. I started to get claustrophobic and I began to panic a little. All my animal instincts wanted to pull everything out and run away. Instead, I tried to focus on Columbo trying to prove that Gene Barry killed his wife or on what a jerk Darren was to Samantha.

After almost seven hours they disconnected me. I was told it's usually tradition for the donor to see their stem cells go into the patient, so I went to visit my brother to watch the drip of the stem cells. The cells looked dark, dark red in their plastic bag. At one point during the procedure the doctor came up to my bag and poked at it and said they looked good and red, and that Leukemia was German for 'white blood'; then he walked away. To me they looked like the Merlot in a bag that comes in the Target box of wine. I believe that the box of wine is the secret to stem cell success.

I only stayed a little while, I was just barely holding it together. The drive home was terrible ; it took over two hours. I should have gotten someone to drive me but I hadn't planned on this 7 hour ordeal. When I got home I was a mess, emotionally and physically. The scariest thing was having an almost seizure-like bout of shaking after I drank a glass of cold water. It was as if my blood had turned to ice. I shook so bad that I barely made it to the living chair and a blanket I had there. My poor kitty Dinah ran up to me and meowed, her tail becoming really big and bushy, even she was scared by what she was seeing. After a few minutes it passed and my heating pad became my best friend.

I didn’t go to sleep until nearly one again; I had to be up at five to get to the hospital by seven for the 2nd day. I had trouble sleeping due to the thought of those needles in my arms for another day.

Wednesday: I just steeled myself for another day of more of the same; However, it was much easier. The nurse had put the needle in farther and really taped up my arm. Since there weren't any pressure issues, the machine was turned up higher. I finished in four hours instead of six. I was off of the Nupergin shots most of my body pains had subsided. The only thing that was bad was that I had to pee. I made it fine through the first day without having to go, but today it was different. I asked for the urinal bottle. Note to self… it’s really difficult to pee laying flat on your back while trying not to move one of your arms and only being able to move the other up and down and slowly. I pretty much peed all over myself. Needles in my arms, pee down my pants, I just needed the paparazzi. After finishing the first disc of season 1 of Bewitched (I learned that all the female witches had names that ended in 'a') and a great Dick Cavett interview with Alfred Hitchcock, it was finally over.

The good news is that I’m a master stem cell producer. The first day they harvested 12 million cells; that’s double what was expected. I’m a stem superstar. My brother and I match on all four counts in the human leukocyte antigen (HLA) tissue type, this is really rare; It’s as if my mother gave birth to twins twenty years apart. His doctor is very enthusiastic about these results and told me I gave him almost a perfect storm of events that will allow the procedure to work.

The rest is up to my brother. He is doing so well that they are letting him out of the hospital in ten days instead of the 30 they had predicted. They will run the first tests in five weeks to see where his white blood cell count is and if my stem cells have taken over his system. I’ll keep you posted on his progress.

Thursday: Today, I just feel emotionally and physically exhausted. I’ve a couple days of building back up my white blood cells and my calcium and then I should be back to normal.

I hope that this account is helpful if anyone has to ever go through this. I wouldn't wish it on anyone. But my grueling tale shouldn't stop you. If I had to I would do it over again if I had to...

Hugs and good health to all...

12 comments:

Frankie said...

Wow, what a story! What a hero you are. My best wishes to your brother.

You're very inspiring.

Mike said...

You.

Are.

Awesome.

Good luck to your brother!

Mike Lynch said...

Johnny, this was not grueling to read at all -- if anything, you are a great brother and it was a fascinating read. Wonderful to hear that you were a match.

All best wishes, from my family to yours, my friend. I hope your brother is doing OK. Now you gotta keep us posted, OK? OK!

Aaron said...

Johnny,

Your brother must be a terrific guy--he sure has a terrific brother! You really are an angel...best wishes to you and to him! I hope all goes beautifully. I'll keep thinking good thoughts!

Anonymous said...

Bless you, Johnnie! And thank you for reporting on your experience. I think that many of us have the impression that being a donor is like giving blood and, clearly, it's much more. You brother is lucky to have you and so are we! Your blog is jusr wonderful.

Hugs
Linda

Anonymous said...

Johnny
Thanks for sharing this with us. You are amazing! Best wishes for your brother. Hope to see you soon.
BC

kat said...

John! You are our hero! How anyone could put up with those bad movies and needles at the same time is a wonder. You are amazing. We hope your brother is doing better.

We love you and look forward to seeing you at the Holidaze.

Kat and Andy

Hugs to Dinah

Anonymous said...

Thanks for sharing your amazing story.
-chris

Mariana said...

You're an inspiration, thank you for your selflessness.

dirk.mancuso said...

Wow.

Amazing post, Johnny. Grueling? Yes, in places. But also really important for people (like myself) who may have misconceptions about what the procedure actually involves. And as terrified of needles as I am, it wasn't anywhere as horrifying as what I thought was actually took place.

You're an incredible guy and a terrific brother. I'm sending good thoughts your way as well as your brother's.

Take care,

- Dirk

Heather Anthony said...

Really wonderful read, I was browsing for what Nupergin was and I found that answer and much more here. Thanks for sharing your story, I hope your brother is doing better. You did a great thing.

Johnny C said...

Heather... unfortunately my brother died 3 years ago. But not from the cancer, which he was fully clear of because of the procedure, but because the procedure took so much out of him that he never quite was the same. His heart just gave out one day.

Are you going to do the stem cel transfer... best of luck if you are. It was a hard process but rewarding.