The one thing we as humans fear most is the unknown. Not knowing what to expect or what the future holds can become very stressful. As the new year kicked off, treatment ending and transplant around the corner, I began to feel very emotional. I was bursting out in tears everywhere at work, at home, and of course in my car. I mean I was suiting up to have the most invasive procedure any doctor could possibly do to a human being. Completely wiping out my immune system and HOPING that a new one re-develops is pretty BIG shit! I put emphasis on “hoping” because after they discussed the process, the risk and the possibility of the transplant failing and/or resulting in death, I was left with with a 50/50 response on what the outcome could be. The uncertainty was unbearable.
Modern medicine today has proven that a half match (50%) donor versus a full match donor (100%) does not result in any significant difference in whether or not the transplant will work. At the same time they were encouraging me to join a study ( a clinical trial basically) of being randomized to either get stem cells from either a half match donor or cells from an Umbilical Cord blood (UCB) donor. If randomized to Umbilical cord it would get my potential donor off the hook and the blood would be provided from a blood bank. The creepy thing about Umbilical cord blood is that its use was mostly successful in children with blood or bone marrow cancers and autoimmune diseases but not so much in adults. Hence why they are still conducting trials so they can determine which is more effective. If I am chosen to use my potential donor the stem cells are extracted from both sides of the back of the donors hips, cleaned up (sent to get pretty as I say) then sent to me right after to be given intravenously via a Hickman line (explained later). To receive UCB I am matched to TWO different baby cord bloods the same way I am matched to a potential donor. This is all done through a number of blood test. Once the test are completed, the 2 best matches are found and the bags of UCB stem cells are transported to the hospital from whichever blood bank is holding them. For adults, however many bags of Stem cells you receive depends on your size and your weight. Two is most common.
My life was in my hands as they handed me a book of paperwork encouraging me to sign my life away ….LITERALLY! I was dumbfounded as to why they just didn’t tell me what was best. The decision of joining the study or using the donor was left in my hands. Like why the hell would you do that! But then I had to remember where I was. Being at Johns Hopkins meant you were more than likely a lab rat to have research conducted on. I tried asking the doctors many questions but their go to response was always “As of now we don’t see any significant difference. They both have had pretty much the same outcome which is why we are conducting trials and giving you the option to decide.” Fuckery!! Smdh. As if I wasn’t enough of a guinea pig right!
The doctors and nurses all kept encouraging me to now become a lab rat and join the study! My anxiety was at an all time high. I was terrified because I didn’t know what to expect. I was given the “Red pill”, “Blue pill” ultimatum and I didn’t like it one bit. My mind raced with a million concerns. Why would they leave me with such a major decision? What if I made the wrong choice and the one I get randomly decides to failed? What if whichever ones side effects were worse than the other? Would I be able to exercise, dance, or just do fun stuff anymore? These were questions and thoughts I found myself asking quietly daily. Not knowing if it would be a success or not, or if it would lead to my death took such an emotional toll on me. GVHD (Graft-Versus host disease) was the #1 risk that could potentially be fatal and is very common in bone marrow transplants. GVHD is when the cells of the donor blood attack my cells because they recognize that they are in a foreign place (a body not of their own). I was emotionally and mentally exhausted. It didn’t help that family was stressing out about the situation as well and me being out of work for the procedure. That did nothing but add to my stress and continue to cause me to freak out. Stressed or upset wasn’t even the word. But this was my reality.
For weeks I did research to try to determine the best choice but the doctors were right the outcomes were coming up the same. I weighed the pros and cons heavily. But still could not draw a conclusion. So I prayed on it frequently for God to send me in the right direction. My faith in him had gotten me this far and so far I’ve handled everything he had thrown my way like a bawse. LOL. Deep in my heart I knew this was just another hurdle to overcome. I now started considering the fact that it would get my donor off the hook. It pained me for anybody to have to deal with my diagnoses let alone having to do a whole procedure of any kind just to save my life. I hated the thought of it. But to live or die was the ultimate question and having a kid involved obviously meant I needed to live so this had to be done. I then remembered that I read somewhere that cord blood was probably better. The cells are brand new and have no previous memory so grafting should be a lot smoother and the possibility of GVHD so be minimal. I would be pretty much getting a copy of a brand new baby’s immune system. In this case, my potential donor end up being my mom. Mother’s they claim are always automatically half a match for obvious reasons. So it was either get a copy of your mom’s immune system or a brand new babies. The brand new one of course sounded more appealing.
My pros started to lean more towards joining the UCB study. The fact that I would be left to randomization helped me to start putting my fears aside and put it all in God’s hands. I began to strongly believe that if I was meant to use a donor it would chose donor and if not then the UCB. Finally, I just decided to go for it. Whatever the outcome of my faith would be was ok with me. Death doesn’t scare me. Everyone knows that our bodies on earth are temporary. It all just falls back onto that feeling of uncertainty of questioning When? This is what drives the fear in all of us. I realized that I had gotten this far and did so still being able to live my life as normal as MY new normal would allow me to, so what was another step. I was now entering my new chapter of transplant and moving forward. Needless to say I made my decision to join the study and let God determine my fate.
Everyone preparing for transplant is assigned a Bone marrow transplant coordinator. This is the person responsible for making sure they schedule ALL your Pre- screening and Evaluation testing Pre-transplant. Let me tell ya’ll something! Hopkins has the most fucktardish group of individuals in the scheduling department that I’ve ever seen in my life!! Like I never understood how a group of individuals who all use the same system and have excess to your EMR (Electronic Medical Record) all had difficulty getting on the same page. When it came to actually scheduling the transplant my oncologist, his nurse, the transplant doctor, the potential UCB trial doctor and the coordinator ALL told me different time frames and dates. Not once communicating among one another so that everyone was on the same page. I told my oncologist who I followed up with frequently during my chemotherapy treatments that I was taking a week vacation to Atlanta and Miami the 1st week of January so I would not be able to do the transplant until sometime after I returned. He and his nurse on two different occasions assured me that I would not have anything done that soon because transplant had to be scheduled with 4 weeks from my last chemotherapy treatment and I had one treatment left.
Welp! The stupid BMT coordinator didn’t get the memo and scheduled my ACTUAL transplant date for 2 weeks after I came back from Miami. Mind you there was a good 20 something Pre-screening and Evaluation testing PLUS a dental clearance that I had to obtain before even getting a transplant. This meant I had to start the 50 million appointments that took all damn day the next day after I got off the plane. As I mentioned before I’ve worked Full- Time throughout this entire process so obviously this wasn’t going to work. I had to give my job notice and complete my FMLA in addition to preparing to be out of work for 3-4 months. I mean I had shit to do. That lady was tripping! So I missed the 1st “major appointment” which consisted of a Bone biopsy/Bone Marrow Aspirate , a PET Scan to determine the progress of the treatments, a CT scan of the maxillofacial area (sinuses), a million tubes of blood, and an EKG all in one day. I told that lady she tried it LOL!! It was happening and that she needed to reschedule.
You would never guess what happened next. She literally rescheduled my transplant a week later. -_- Like what a dummy! I explained to her what I discussed with the doctors and mind you I have one more treatment left. Transplant had to be scheduled 4 weeks after the date of the my last transplant and explained to her what was the issue. She decided to cop an attitude. She then got the nurse involved and they both started giving me lip talking about how important these appointments are and blah blah. After arguing with them and telling them to conduct themselves in a more professional manner I was told that if I missed the rescheduled appointment again they would just say forget the transplant, send me back to my local oncologist on the treatment I was on until it basically stopped working and I died! SHOCKED!!! That I was being talked to and treated in such a manner after missing an appointment due to someone else’s negligence and laziness I turned to the authorities. It was unbelievable. I filed a complaint right away and needless to say I received an apology and a,” I was under the “IMPRESSION” you were completely done with treatment” BS. WHAHHH BIHHHH!!! You got to be kidding me was my reaction. How do you get so defensive with a cancer patient about something happening due to your own negligence? All she had to do was look in my damn CHART!! She would’ve saw right then and there that I was scheduled for another treatment and the doctors notes explained when scheduling should take place. SMH. Baltimore! That’s all I could say.
Anyway, everyone finally got on the same page and my appointments were finally scheduled properly giving me enough time to prepare. My oncologist apologized for his fucktard staff and we moved on. Aside from this disaster of events occurring with scheduling I became more and more confident about joining the study. After talking to the research doctor about my concerns, he confirmed that if chosen for UCB and it failed, I still had the option of using my mother as a backup. That was reassuring for me. To know that this was not my only option. So with minimal doubts I now signed that book of paperwork that literally signed my life away to Johns Hopkins. To say the least it was bittersweet knowing that this was finally and truly happening. We were now well on our way into the transplant process.