Another Hurdle

Finally, 68 days after my second bone marrow transplant, I was released from UNC Hospital. Just like in 2003, we had to go to an apartment nearby for the remainder of the 100 day process. The doctors wanted transplant patients within 10 miles of the hospital because you could spike a fever indicating an infection and need to get back to the hospital immediately. Having no immune system at the time meant something minor to the average person could be critical for me in a very small period.

Me and mom headed back to the same apartment complex we stayed at after my first bone marrow transplant. The first time we had a second-floor apartment. It was nice to stand at the large windows and overlook the entire area. It was even nicer not having anyone above us vacuuming and stomping and yelling. After the second transplant I was too weak to climb the stairs so we had a first floor apartment. This complex was one of the places approved by UNC for their bone marrow transplant patients. My doctor let me leave the hospital under the stipulations that I go back on Christmas day for platelets and a shot, and that was alright with me. Platelets are what makes your blood clot and prevents bleeding. When I went back on Christmas day, they gave me my shot first followed by my platelets. My platelet count was so low the area where I received the shot immediately started turning purple. For weeks it was a black area about the size of a baseball. Several years later I still had a large dark area from the shot. I thought it was going to be a life long mark, but it eventually faded away.

Three days a week mom would take me back to the bone marrow clinic for lab work and see the doctor. I would almost always need a shot, blood, platelets, or an IV medication. The chemo drug I had received prior to my transplant was still trapped in my third space tissue around my cells killing off what was being made. My body could not regenerate blood cells. I was also still having a lot of nausea and vomiting. We kept a basin in the car because it never failed that I got sick. The basin the hospital gives patients upon admission is very useful. We still have a collection that we use for all kinds of things.

Another thing I had going on was something I had not heard of much. Have you heard of chemo brain? Well, it is real. For Christmas that year I was given money from several people. I was being videoed as I counted the money. I was counting, $20, $40, $60, $80, and I didn’t know the next number. I put the money down and start the counting over. I got to about $120 the second time, sat the money down, and said, “I don’t know how much is here because I don’t know how to count”. The chemo really does affect your brain. I couldn’t remember much of anything. For those of you who may be experiencing that now, it does get better.

As the weeks went on, we continued going to appointments where I would get shots and transfusions. I would get an infection and need IV antibiotics at home or need to be admitted. My appetite was terrible. One of my doctors kept threatening a feeding tube, but I always refused. They gave me meds to make me eat, but it did not work. Over the next several months I got down to the lowest weight I had been since diagnosis. I was a whopping 82lbs.

I think sometime in March, the chemotherapy medication trapped in my body was finally working its way out of my cells. My doctor approved me to go home to Clinton, but I was still going back to UNC every 2-3 days. Once the medication trapped in my cells had cleared completely, I had to get what the doctors call a “boost”. This is basically a third bone marrow transplant without the chemotherapy. My transplant coordinator had to go back through the appropriate channels to ask my donor for more cells. Thankfully, Sabine agreed to donate again, which was a big sacrifice for her. Before donation, the donor is given injections to build up stem cells. Sabine had a terrible allergic reaction to the shots while preparing for the first donation, therefore the doctor was unable to repeat the same process as before. Instead, an invasive surgical procedure was needed to extract the marrow. We were told doctors had to go into Sabine’s lower back around 100 times to get the number of cells needed. I don’t know if it was a literal 100 times or just many many times. Knowing this makes me that much more grateful for what She did for me. I can never thank her enough. When I was in desperate need of more marrow, Sabine went through the risk and pain of a surgery to save my life, a complete stranger.

I haven’t mentioned the guy I was dating during this time much, but it is part of my story. He stuck with me through it all, and would spend all of his days off work at Chapel Hill. We had been dating since I was almost 16. We had talked about marriage many times, but I did not want to get engaged until I was completely well. I did not know if I was going to survive, and losing a fiancé seemed worse than a girlfriend to me. A day or so before I was going in for my second transplant he did propose. Six months later it was over. He broke up with me the day before I went to have my boost. This was just another bump in the road, but it was for the best.

Once I got my third dose of bone marrow on April 14, 2006 my body began regenerating cells that were lasting. The procedure to get the boost was very simple, only taking a few hours in the transplant clinic. I had to be premedicated to prevent allergic reactions, and it all went well. The PA, Bob, administered the stem cells. It was a small amount in a large syringe that he pushed in very slowly by hand, stopping after every press of the syringe. Not long afterwards the syringe was empty and I was heading home. That was 16 years ago and I think about my 2 transplant donors all the time. I am still unsure of my purpose here on Earth, but God knows. He must have something big planned to have pulled me through such storms. I am so grateful to be alive today and want to give everyone out there dealing with cancer or other illnesses encouragement to know you can get through it. You never know how strong you are until you are forced to be strong. Faith over Fear!