I will never forget the day July 15, 1991.
Without a doubt it was one of the worst, most painful days of my life.
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27 years ago today around 12:30 PM, my oncologist and doctors from the bone marrow transplant unit entered my room.
This was the final phase of my cancer treatment. The previous 7 months had seen a healthy, active, normal 16-year old that was a sensational athlete, reduced to a 115 pound weakling who couldn’t stand up or walk.
Here is what happened that day and during transplant. This is taken from an excerpt from my book “My Scars Tell A Story”
When you read this, please understand how valuable and special life is.
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On July 15,1991 I received my bone marrow transplant. The marrow was inserted from a thing that looked like a turkey baster, into one of the lumens in my chest. The doctor didn’t slowly inject this stuff either; he pushed it in full throttle. That was the strangest sensation that I had ever felt. After that was over, my body kind of went into shock, and I vomited for a couple of hours.
About a week after transplant was when, as they say “the shit really started to hit the fan”. By then I had no blood counts, sores were forming all up and down my esophagus and mouth to where I could not swallow for about two weeks. My mom would give me ice to suck on that I would just let trickle down my throat. That was just the beginning.
The first real scary experience from my transplant occurred when I started to see blood in my urine. This was the most frightening thing that I had ever seen. My doctors thought it was from my body’s shock from the transplant, but when the bleeding increased more and more, they decided to operate.
When my surgeon went in, he discovered why the bleeding was so severe. The radiation therapy that they gave me two months ago had torn a massive hole in my bladder. When I woke up from surgery, I found out what it was like to have a catheter. This was completely tragic for me. To see that thing in me, just totally took away my manhood. I was in extreme pain for the week that the catheter was in me. What made the catheter worse was the medicine they gave me that was supposed to make my bladder heal. In order for the medicine to work, it had to sit in my bladder for 30 minutes and the nurse would tie up the catheter line, so no fluid would run through. That sounds easy enough, right? WRONG! I had never felt such intense pressure on my bladder, and had tremendous pain just trying to keep the fluid in. I could hold it in for 3 maybe 4 minutes without screaming in agony. I had the strongest urge ever to take a pee, and was not able to go. That’s what it was like, and it was complete torture.
Finally, after a week, they took my catheter out, and boy you couldn’t imagine how uncomfortable that was. However, my relationship with catheters and bladder surgery was just beginning. Meanwhile, during this time, I started to experience severe pain in my lower back. My doctors were afraid that it was the cancer returning, but when they x-rayed me it actually showed that I had a collapsed lung. Not the greatest of news, but better than what they thought. The collapsed lung was due to me catching pneumonia, which I got because of having such low blood counts for 3 weeks.
Lets recap the last month. I had sores so bad in my mouth and down my throat that I could not swallow. I had severe bleeding in my bladder, and a catheter in me. I had no blood counts to speak of, and now had a collapsed lung with pneumonia. Shed a tear if you have to, this is not for the light hearted.
It was now the beginning of August, and although the sores in my mouth were healing, not much else was. My bladder acted up again which required another surgery and catheter. Every day I would receive a platelet transfusion, because I was losing a tremendous amount of blood. Some days I would even have two platelet transfusions. After about a week of having the catheter in, the bleeding became massive. The blood was now clogging up the catheter and I had to be rushed in to emergency surgery to stop the problem. I was never more scared in my life at this point. My bladder was spasming so bad that they had to hold me down because I was kicking and screaming from the pain. The blood in my bladder had now completely clogged my catheter and it was no longer draining. Imagine having the worst urge to pee and not being able to, knowing that it was because of blood backing up in to your kidneys. I went to the operating room four times in a week and a half and was losing blood faster than I was making it. It was getting very bad and the future was not looking good. I was very sick and weak, but I still had the faith that God was going to pull me through. It was very tough, and at times I wondered if God was listening, but I still had faith. It got so bad some nights that I would ask God that if things didn’t get better soon to please take me home and take away my pain.
During the last week of August, I started to spike these really high fevers. I was consistently around 103-104 degrees for about two days. The doctors had figured that one of the lumens in my broviac had been infected, and wanted to test it by running fluid through it. My mother was absolutely convinced that the lumen was infected, and demanded that the broviac be removed immediately, and that if the doctors ran anything through my lumen she would sue the hospital.
Emergency surgery was needed to remove my broviac, which meant no anesthesia. I was going to have to stay wake while they cut me open, and removed my broviac. It wasn’t total butchery as the doctors had the decency to numb the area with Novocain. My nurse stood in the back of the room and held my hand as the doctors cut in to my chest and started to remove my broviac. I could see the blood dripping down my chest on to my stomach. As the knife cut deeper I started to scream more and more. Remember, this was something that had been in my body for eight and a half months. The surgeon had a difficult time removing it and a procedure that normally takes twenty minutes, wound up taking over an hour and a half.
After the surgery I was so relieved. The doctors did find a staph infection in one of my lumens. If they had run anything through that lumen, I would have died within minutes.
Thank God that my mother didn’t listen to the doctors and had them remove it. Moms always know best, especially mine.
That incident almost was the end, and by the last week of August not much else was getting better. Besides having pneumonia, a collapsed lung, massive bleeding, and an infected lumen, I also had no blood counts. Time was running out and my counts needed to come up, or else. Things became so morbid that the last weekend of August my doctors told my mom and dad that I was not going to make it through the weekend. They told them to call family and friends and tell them the same.