You're Such A Baby!

I had my stem cell transplant on May 1st and it was quite the experience. At Moffitt Cancer Center they consider this your new birthday as you are starting over from scratch with a new immune system. Presents are expected! So, now I have two birthdays. I won't complain as I get another excuse to eat cake. I like cake . . . a lot.

The transplant actually started a couple days earlier. I checked into the hospital on Monday night and was given an IV of Melphalan. Melphalan is a chemo drug and causes all kinds of nasty side effects. One of them is sores in your mouth. They have found though that if you suck on ice for a half hour before the IV, then all during the IV and for a half hour afterwards, you lessen your chances of getting sores. I must have done a good job with the ice as I didn't get but one very minor mouth sore. The chemo destroys your entire digestive tract though, from top to bottom. You don't feel any side effects for about a week, so the first days were easy.

On Wednesday morning, day '0', they brought in my stem cells one bag at a time and hooked them up to the central line in my chest. I didn't mention that, but a week earlier they had installed a special line into a big vein up under my collar bone. This line was buried under my skin for a little ways and then came out and there was a "Y" connection on the end. This hung about 6" out of my chest. It didn't hurt, although it did itch a bit and was a pain in the ass when it came time to get a shower as it couldn't get wet. They used this line to filter the stem cells out of my blood and then for the next month to give me IV's of various kinds and to draw blood every day at 4 am. So, they brought the bags of stem cells in and the man from the lab where they store them read off all the pertinent information to the nurse, then she read it back and confirmed that these really were my stem cells. Then she hooked the bag up and let it run, it only took about 20-25 minutes a bag. They did this 4 times, so each bag had about 500,000 stem cells. Since we collected 6.9 million cells, I still have a bunch in storage in case I ever decide I need to do it again. I hope not as it wasn't any fun! Funny thing about the stem cells is that they smell, but the patient can't smell them. My wife said she could smell them and that I smelled for a few days afterward, but I never smelled a thing.

The hardest part of the stem cell transplant for me was the boredom. Well, that and a lousy TV remote and a really uncomfortable chair. After about a week I started getting a lot of mucous in my mouth and was gagging and choking on it until I threw up. It got harder and harder to eat and to swallow pills. Eventually I lost all desire and ability to eat and just drank water, which gave me terrible indigestion. They want you to drink huge amounts of water to help flush the chemicals out of your system, it was a real trial as it was making me sick. Eventually I was able to drink their special milk shakes and cherry ices, that helped some. Then things got nasty as I got diarrhea so bad I had to wear diapers. All of this was due to the damage caused by the chemo. Basically they told me the first layer of my digestive tract was peeling off and being replaced. I also lost all my hair, although I still have eyelashes and eyebrows. Strange!

A week or so after the transplant, my white blood count was effectively zero. They then gave me another shot of Neupogen to help get the white blood cells going again. A week later my white blood cells were making a really good comeback and I was starting to feel better. Then they asked me if I wanted to go home, they didn't have to ask twice! I wasn't really going home though. I was actually going to the Residence Inn a couple miles down the road from the hospital. They have a special deal with the hospital and clean the rooms with approved cleaners and give special discounts on the rooms. The room had two bathrooms, which makes things easier on your care giver as you aren't allowed to use the same bathroom. If we only had one bathroom, my wife would have had to clean it every time I used it. Then again after she used it. While I had been released, I still spent every day at the hospital with an IV hooked up to my chest. I also had to endure endless nagging about not eating from the nurses, the dietician and my wife. It is hard to describe, but I felt like every drop of food had to be forced down. I started eating again that week, just a little at a time though. I was still gagging on flem in my throat and taking pills would make me gag until I started throwing up. We spent about 1.5 weeks at the hotel and then they gave me permission to go home. I don't know what happened, but the first evening home I ate a couple slices of pizza and have been eating almost normally ever since! In the end I lost 25 pounds, not bad considering the steroids had made me gain 25 pounds before I went in the hospital!

The bills so far are over $320,000 and still counting. Luckily our health insurance is covering almost all of it. I will never complain about United Healthcare. They have paid everything they said they would without any trouble at all. Unfortunately, my wife's employer has switched to another provider. I hope the new guys do as well as the old guys.

It is now day 64 or so. I feel fine except for being tired all the time. I am not talking about just feeling worn out, I mean fall asleep most of the day tired. They told me I would feel "profound fatigue" and they weren't kidding. I have started riding my bike again. I can now go ten miles, although I have to stop and rest three times. That used to be about when I was getting warmed up. After I get home from a ride I get a shower and something to eat, then fall asleep the rest of the day. I don't ride two days in a row, not enough energy. I have all kinds of restrictions still. I am not allowed to be in big crowds, no yard work, no remodeling, no being around little kids. I can fish, but I can't touch the fish or bait the hook. When I go out to eat I have to be very careful where we go as it has to be clean. I am not allowed to have soda fountain drinks, ice, fresh fruit or vegetables unless they are scrubbed, any food that isn't prepared just for me and all meat has to be cooked to death. Buffet's and salad bars are off limits. I can't drink out of a water fountain. Needless to say, it takes the fun out of dining out!

Around day 100 or so I go back to the hospital for a full day of tests and visits with my doctors. They will take X-rays of my entire body and do another bone marrow biopsy. We'll know then whether the transplant worked well. The blood work is showing no cancer. It is still there, just too little to show up on the tests. That day I will also get my first round of childhood immunizations. I'll have to get my wife one of those little cards new mothers carry around with their babies shot record. So, when someone tells me I am a big baby, I won't argue with them. I am only a couple of months old!

Timm Smith
July 3, 2014

August 13, 2014!

Last week I spent a day at Moffitt Cancer Center meeting with my doctors and having a full battery of tests. I had a call yesterday from my local oncologist who was letting me know that the bone marrow biopsy is not showing any cancer, so I am again in full remission! The blood tests and the 24 hour urine test are giving the same result, so I guess it's true! Most importantly though, Dr. Nishihori took me off the food restrictions, so I can have sweet tea again. (If you aren't from the South, this may not make sense to you. You have to taste the sweet tea down here to appreciate it!) According to the doctor, I now have the immune system of a 3 month old baby.

Overall I am feeling well, almost normal. Well, except for my feet hurting all the time and still being a bit tired. I am trying to ride my bike more, but I have a recurring problem with my knee that is slowing me down. I guess I need to go see the knee doctor again. I need to do it soon though as I have started to gain weight. Dieting is no fun!