The Treatment
The first step in my treatment was being administered a horse-derived antibody called ATG that would suppress the T-cells that were attacking my stem cells. This to me is an amazing feat of old meets new medicine! They take human T-cells and inject them into a horse and since the horse's antibodies will recognize that there's a foreign substance they will gear up and wipe out the human T-cells. Now that the antibodies established those T-cells as a virus the horse's antibodies are then harvested and administered into a patient to wipe out their human T-cells which gives enough immunosuppression to allow the bone marrow to restart itself. This was given to me intravenously through a PICC line they had inserted in my left arm earlier that day. The ATG was given to me over the course of 4 days for 12 hours each day. I reacted quite heavily to the horse serum and broke out in allergic wheals. They gave me IV benadryl to counteract it which made me very drowsy and so I slept the majority of those four days.
These were all over my body and so incredibly itchy.
I remember waking up at one point to see an older cousin of mine standing beside my mom at the end of my bed and he had tears welled up in his eyes, and this guy was an emotional rock most of the time. I had never seen him emit much emotion (from the very stoic German side of my family) and to see him in that state really stuck with me. It's one of the few things I remember from those couple of days.
The PICC line was a tubing that went to my heart so that drug absorption/transfusions could happen faster and for drawing blood, which saved me 6 months worth of needle pokes.
I also made a friend while I was in that observation unit, a 72 year old man with cancer named Dale who made my hospital stay not just bearable but enjoyable. He was so friendly and as we walked our IV poles around the square hallway of the oncology ward he would tell me stories and make me laugh in what would have otherwise been a very dreary walk alone. Once I was out of the hospital he would call me and check up to see how I was doing and always made me feel important. He was one of a kind, and when he passed away at the age of 73 I felt the loss like I had lost a family member of my own. His funeral was held in a school gymnasium and it was packed full of people, to the point where there was only standing room left and even that was crowded. It was a true testament to the type of person he was, that people from near and far wanted to be there. He really inspired me to try to be the type of person that he was, to make everyone he came across feel like they mattered and be treated as a friend.
I wanted to include his story because of the impact he had on me. You never know who will pop into your life, even at your worst moments there can be someone who will bring you sunshine.
My stay in the hospital lasted 13 days in total and when it was time for me to leave, I felt very scared and vulnerable to leave the place that had kept me alive and safe.
Once I got home I was put on a drug calendar that told me how many of what to take each day. I started with the "anti's"(antifungal, antibacterial, antiviral), was on a high dose of prednisone, and was taking pantoprazole for stomach pains that came with the rest of the medications, plus a multivitamin for good measure.
The dose of prednisone I was on had some incredible side effects on me. I noticed almost right away that I would get these sweeping mood swings where one minute I'd yell at my mom over something trivial and the next minute be crying and apologizing to her for yelling. I became voraciously hungry and started eating up to six full meals a day. Prednisone made me retain water to the point where my belly looked distended and every breath I took felt like it was pulling my skin apart (pictured below).
I gained a hearty 25 lbs during the two weeks I was on the corticosteriod and I wouldn't wish the drug upon my worst enemy. I can't imagine what it would have done to me if I had been on it for more than a month.
Progress pictures of getting back to my pre-prednisone weight.
Thankfully I wasn't on 21 pills for too long and soon started taking cyclosporine. This drug was to suppress my immune system so that it could reboot itself and start making enough new blood cells to get to healthy levels. I took the drug for 18 months and had some nasty side effects that came along with it. The first thing I noticed was that the pills made my stomach burn about an hour after I took it. It was like this relentless gnawing pain that made me curl into a ball and wish it would stop. It also made all the air coming out of my nose or mouth feel like it came out of a furnace. My hands and feet would also burn but in a different sense. It felt like placing icy cold hands under running hot water. It was more of a stinging burn than a hot flame burn.
Over the longer term it gave me sharp shooting pains in my joints and bones. Also a common side effect of the drug is hair growth and I definitely was afflicted with that both with the hair on my head and on my face/belly/feet/hands/back/you name it. These fine little black hairs started popping up everywhere and I asked my doctor what was happening and he told me that the body typically has 1/3 of our body's follicles active and while on the cyclosporine, about 2/3 of mine were possibly going to be activated. Along with the new hair growth I also began producing acne at an alarming rate. It was all under the skin but still looked awful both covered or uncovered with makeup and so I would try to deal with it but only made it worse by doing so. I felt so incredibly defeated at times because being nineteen years old, covered in hair and so full of acne that I didn't want to look people in the eye, it wasn't always easy staying positive. I was scared that people's gaze wouldn't meet mine but instead be focused on the rest of my speckled face. One day I almost called in sick to work because I was a waitress and I didn't want to have to put in the effort to try and cover what would have been one of my worst days, and spend the day talking to 30 or more strangers. I pushed through however and brought my makeup with me and reapplied it numerous times throughout that day hoping that what lied underneath wouldn't show through.
I've altered the lighting just enough to reveal some of the redness the warm colored lights were hiding.
It still hurts me to look at this photo knowing how awful I felt taking it. This was probably the one thing I had the most trouble with throughout my ordeal. I am naturally a very happy and confident person but between the acne and the hair growth I lost almost all of my self confidence. I felt like nobody could possibly find me attractive and wouldn't be able to see past the superficial to get to know me as a person. I often skirted parties or events depending on how I gauged my appearance that day. I avoided activities that took place during the day because my makeup wouldn't be able to cover enough in the sunshine. It was a really tough time for me, however, I had maintained my sense of self worth and often shrugged off my embarrassment with self deprecating humor and the ability to laugh at myself. The people who mattered in my life didn't seem to mind and so by focusing on those people, I managed to keep things in perspective.
In June of 2015 I finally had my PICC line removed and I was happy but absolutely ecstatic once I had my first shower without my rubber sleeve. The PICC line couldn't get wet and so showering became a chore because I'd have to roll on this rubber cast sleeve each and every time and I'd lose the use of my left hand while it was in there.
I successfully managed to live a very normal life from 4 months post hospital until June of 2016. I was taken off of cyclosporine, went back to school, had a job and felt like life was back on track and I couldn't have been happier!
