"Boosted" Back To School

I have struggled to write about this next phase in my journey, mainly because I just do not remember it.  In my last blog post I shared about receiving a “Boost”. The time period I am referring to is the year and a half after the boost. I had a boost of donor cells in mid April 2006. I received the boost because a chemotherapy medication was trapped within the cells of my body killing off any new cells being made. When the drug cleared out of my body, I was able to receive another dose of my donor’s bone marrow. This extra dose is what doctors refer to as a boost.  It was like having a third bone marrow transplant, only I did not need the chemotherapy and radiation before.

After my boost, my cells began to regenerate, and my body was making its own marrow cells. Your bone marrow makes blood and the cells within your blood so I was also having less blood and platelet transfusions. This is the time period when my weight got down to 82 pounds. The doctor gave me medication to help me eat, but it did not help much. I remember going to McDonalds one day and getting a single cheeseburger. I literally took three bites and I was done, full, and couldn’t eat another bite. Note, too, that my bites are very small. Two or three of my bites may equal 1 of someone else’s. When I couldn’t eat, taking large bites was overwhelming. It was hard to chew, I didn’t want to eat, and it would make me sick. Small bites were the answer, and now I still do the same. I can eat a Lindt truffle in about eight bites. I also didn’t drink with my meals because once I did, it was over. The liquid would fill my stomach, and I would not be able to eat any more. I would get very nauseated and have to stop eating if I drank too much. As a child growing up, my MaMa Vann would always say not to drink until you finish eating. She never drank with her meal. That is what I would do and I still do it to this day, but during that time period I really had to skip the drinking while eating. I guess her “theory” prepared me for the future.

I know I would get infections and need to stay in the hospital for a short time, and I would have symptoms of Graft verses Host Disease (GVHD) during this period. GVH is when your body fights off your donor cells because it is foreign. A small amount is good, but to much is not. If I had a skin rash, I would have a skin biopsy. If I had stomach issues, I would need a colonoscopy or endoscopy. The doctors would do biopsies to confirm GVH in both instances. I specifically remember preparing the day before a colonoscopy, because I can picture the apartment where we stayed. While thinking back for this blog, a lot of how I remember certain things is because of the layout of the apartment. During my first bone marrow transplant we stayed in a second-floor apartment, after the second transplant we stayed in a first-floor apartment. The two apartments were laid out completely different, so it helps me distinguish between 2003 and 2005.

Another side effect of chemo is neuropathy. Neuropathy may not be one you hear of often, but it is very uncomfortable. Diabetics also get neuropathy, so you may have this or know someone who does. Neuropathy causes a tingling and numbness in your extremities. I had it terribly in my feet. I can picture myself sitting at the small computer nook in that first-floor apartment googling treatments for neuropathy. For me, my feet tingled in a very painful way all the time. They never were numb, but the feeling was intense and never stopped. Have you ever had freezing cold feet and stepped into a warm shower getting that tingly feeling? Have you ever sat on your legs for a long period of time, stood up, and they were “asleep” feeling like pens and needles sticking in you? Well, those two feelings are how my feet felt all the time. Thankfully, for those of you who have this, know it does get better.  Eventually it did go away and I only have a tiny bit of the feeling randomly. It is not even enough to mention.

As the days went along and months passed, I was finally much better. My immune system had strengthened and infection was not as critical. My mask was in the trash, and I could be amongst other people. My doctor was pleased, and in the fall of 2007, I enrolled back into Sampson Community College. Now, if you have read my previous stories and are keeping count, this is my third attempt at college. I was determined to get a college degree and I was praying the third time was the charm.

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!

2nd BMT Hospital Stay, 2005

My second bone marrow transplant was a doozy. I was so sick. Weeks later, when my marrow should have been making new blood cells, nothing much was happening. I was receiving platelet transfusions every two or three days and blood transfusions every three or four days. The doctors didn’t really know why this was happening, but it didn’t take long for my genius BMT doctor to figure it out. Somehow one of the medications they were giving me with the chemo was trapped in third layer tissue. No, I can not explain what that means however, I did learn about the third space around cells in nursing school, and it was very complicated. The important thing to know is that as my marrow was regenerating and making new cells, the chemo drug was stuck in my body killing off everything that was being made.  By now, I had been in the hospital over a month, and I was not improving much at all. I was living off of transfusions and all that could be done was to let my body naturally clear out the drug.

In nursing school, I had also learned about mouth sores. You can learn about things, but until you actually experience it, you do not truly understand what it is like. I pictured mouth sores to be like a lot of ulcers. No, this was bad and very painful. It was large pieces of thick skin that shed all the way down my esophagus. I would cough up huge chunks of skin. Even the skin on my tongue came off. My tongue was completely smooth for a long time, and the tip is still smooth today. The skin on my hands and feet also peeled off. It did not peel off like a sunburn, it was thick pieces of skin. The doctor said my hands and feet peeled because of the chemo drug trapped in my body. I apologize to those of you who do not like hearing stuff like that. I had to tell it for you to get a complete understanding. LOL! Although I did leave out a lot about it.

My mouth and throat were hurting so bad from the mouth sores I could not eat for a month. The nurses were feeding me through my IV line in my chest, and I would only drink water when I could. While this was going on, I was receiving my Tacrolimus by IV because I couldn’t swallow anything. Tacrolimus is an antirejection medication that the patient usually took by mouth. After a few doses of the med through my IV, mom noticed I was acting unlike myself. The nurses and doctors said it was the morphine, but momma new it was different than the way I reacted to morphine. She noticed the nurse coming in to hang more of the Tacrolimus only a few hours after the last dose. She questioned timing of administering the tacrolimus, thinking it should only be given every 24 hours. Mom kept telling her something was not right, and the nurse finally said, “do you want me to check it?” Of course, mom said yes, and the nurse did. A little while later the doctor and pharmacist and a team of personnel came in to my room. They were filling out reports and questioning mom. The medication was supposed to be given every 24 hours, but the pharmacy had labeled it to be given every 4 hours. They had overdosed me on the medication and it was causing all kinds of side effects and reactions. I had tremors and bad hallucinations. I was seeing things that I thought were really there and happening. At one point, I thought there was a circus outside my window and people all around. I did not know what was real or fake. It was very stressful for me and my mom. Momma also said I was screaming and flailing my arms around. I was given meds to counter act the overdose and was soon back to myself.

There was about a month’s period of time that I was completely out of it. I do not remember this period of time, I was being fed through my IV, and I was very sick. Then a new problem arose. One thing a bone marrow transplant patient can get is Venous Occlusive Disease (VOD). VOD is when there is a blockage in the small blood vessels leading into the liver and the vessels inside the liver. This causes death in many of the transplant patients who develop this disease.  Mom had been borrowing the BMT unit’s patient laptop researching VOD. She saw that another hospital had been doing a study on a new medication for the disease. The study had shown some effectiveness in patients there. She asked my BMT doctor about using it for me. He said that a person in Israel had control of the drug, and, as a last resort, he would contact him. After days of showing no improvement, my doctor told momma he was contacting the person they had talked about in Israel. Mom knew what that meant – “a last resort”. Miraculously when everyone thought I was about to take my last breath, things started improving. I know it was all of the prayers that were being prayed from here to Germany. Finally, after 68 days I was being discharged.

This transplant was tough, and it is a miracle I am alive. All of these things that were happening should have caused death, but I am still here to talk about it. God can take you through rough waters, but he will also bring you out of them. These journeys only make you stronger. You can triumph through the worst if you trust in HIM!

2nd Bone Marrow Transplant, 2005

It was around September 2005, I had had a couple of rounds of chemotherapy, and it was time to be admitted for my second bone marrow transplant. Prior to that, the doctors and the technicians in the lab had completed and studied a lot of my bloodwork and bone marrow. The knowledge the doctors had gained in the two-year period was unbelievable. The research and advancements that had been made were amazing. They had learned ways to identify markers within the donor and recipient to find a better match. Through the lab work, doctors learned that I had the same type of Leukemia that I had in 2003. I also had the same translocation of the number 6 and 11 chromosomes indicating I had to have another unrelated donor. The donor search began, but a match could not be found in the United States. The team had to search internationally, and thankfully a match was found. The donor was a 20-year-old female from Germany. We were not supposed to know she was from Germany, but she sent me a ceramic angel prior to transplant. The angel was sent to the hospital and it was wrapped in a German newspaper in the box. One year later, with her consent, we were able to contact each other. We became close friends and chatted frequently through the internet. Sabine is from Hochstadt An Der Donau, Germany which is in the Bavarian region. My mom and I were able to travel to meet her several years later. She is a blessing!

After learning that I needed another bone marrow transplant, the doctor informed me that I needed radiation as well. They did not want to give me radiation the first time, but since I relapsed it was necessary the second time. When I was admitted for my bone marrow transplant, I had another week of chemotherapy plus three days of total body radiation. The chemotherapy before transplant is very strong and works differently than with other treatments. The doctors wanted to kill all of my cells and marrow so that it would not return. When certain values got to zero, they would give me the donors bone marrow to regenerate in the place of mine. With other chemotherapy treatments it is not as they want your cells to return. With bone marrow transplant the doctors are replacing your marrow with someone else’s marrow. The doctor does not want my marrow to start regenerating with the chance of Leukemia cells returning.

Radiation was given in the Gravely Building located across the drive from the main hospital. That building was old and scary. UNC demolished it a few years ago. On the three days I had radiation, the transport person would take me in a wheelchair. I would wrap up in a blanket because it was always cold rolling through those long halls. The transporter would take me down to the basement then through a tunnel under the driveway to reach the Gravely Building. He would roll me to the door of the room where I received the radiation and leave me until the technician was ready. That is how they did for any kind of test or scan you needed. Sometimes I would sit in a hall for a couple of minutes or half an hour, and it was always cold and uncomfortable. When they were ready to do my radiation, the technician would role me into a small room with a stretcher positioned against the wall and a radiation machine. I would sit on the middle of the stretcher with one of my sides against the wall. The person would place me in a small footprint of a space. My feet were pulled as close to my body as possible with my arms on top of my knees and my head bent down. Basically, I was balled up in a sitting position. The technician would go out of the room, and start the radiation. After 3 minutes the technician would return, turn the stretcher around, and do the same thing again on the other side. It was total body radiation so they had to position me just right so that all of my body was exposed, and do it on both sides. I had to be positioned in a small area to fit the machines small range.

Not only was this building old and scary, but the room I had my treatment in was really scary. Hanging on the walls all around the room were face masks. I do not know if it was for people who had brain tumors or what, but it was creepy. They were made of some type of dark meshy material and molded to fit a person’s face. The walls were white and those darker color faces were hanging all around the room, up, down, and around. Plus, the dim lighting casted shadows across the walls. It looked like faces floating around the room staring at me. I only had to do this for three days and I was glad when it was over.

One or two weeks after chemo and radiation my body was ready for my donor’s marrow. Bone marrow transplant is not a surgical procedure like an organ transplant. When it was time, the cells were hung in a bag just like any other IV medication. The nurse attached them to the line in my chest. After the nurse programmed the IV pump and hit start, the transplant began. Pre meds were given because allergic reactions were possible, but I did fine.

My first donor was a male two years older than me from Saginaw, Michigan. The marrow was sent to UNC fresh and ready to transplant immediately. My second donor was a female two years younger than me from Germany. Since the marrow was coming from another country It took longer to receive, so preservatives were used to keep it fresh. You always knew when someone was getting a bone marrow transplant with preservatives because it smelled just like canned cream corn. Creamed corn may smell delicious cooking at home, but in a hospital setting not so much. It wasn’t until years later that mom and I could smell or eat canned cream corn. Now every time we smell it, we both think of bone marrow transplant.

In 2003, my bone marrow transplant was scheduled for October 20th. The bone marrow was coming straight after the donor donated it, there was a small delay, and I actually received it a few hours after midnight on October 21st. In 2005, my bone marrow transplant was also scheduled for October 20th, and on October 20, 2005, I had my second bone marrow transplant. So, I was diagnosed and relapsed with Leukemia almost exactly 2 years apart, and I had transplant one and two almost exactly two years apart too. Thank you so much Sabine for doing such a kind, life saving, good deed for a complete stranger. Good deed is not even the correct term for this. It is so much more. You will never know how grateful my family and I are for you! God worked another miracle in my life and I am so thankful and blessed. Faith over Fear!