I was completely thrilled until the transplant coordinator told me they wanted to get me started on the process ASAP. She scheduled about 8 different tests and scans to do in a matter of two days and to start the bone marrow transplant the following week. I was like WAIT WAIT WAIT WAIT WAIT!!!!!!
It was at that moment that I realized I was not mentally prepared for this. I was still getting over the fact that I wouldn't need to proceed with a clinical trial; that I had to wrap my head around the idea of being in a hospital on the brink of death for at least 4 months.
I asked the coordinator what the rush was, considering I hadn't anticipated starting transplant until October. She went on to say that my oncologist and transplant doctor were insistent that it was urgent. When I asked why I hadn't heard from either of them directly, she said my transplant doctor was on vacation and I would be hearing from my oncologist about further instructions. I then ended the call and told myself I wouldn't worry about it until I heard from one of my doctors directly.
Needless to say in 24 hours, I heard from my doctor but there was no sense of urgency in what he was telling me. In fact, all he said was "Johns Hopkins wants you to start soon...but it's not a life or death situation if you wanted to wait. You can continue the current chemo treatment until you are ready." I took a sigh of relief. A few days later I received an email from the transplant doctor at Johns Hopkins giving me the ok for October. I was relieved to hear this, but boy was I still upset at the transplant coordinator for causing unnecessary panic.
However as each day pass, the more I became anxious about the upcoming ordeal. I started to look into the details...and they aren't pretty. The transplant coordinator told me that at the start of the transplant process will be scans and tests to make sure I'm healthy enough to go into it. My sister, who is my donor, will also be going through these tests. When these are finished, I go inpatient and get a catheter put into my chest (definitely not looking forward to this after the experience I had with my chemo port). Then I begin 5 days of extreme chemotherapy (10x harder than what I've been on) followed by a day of full body radiation therapy. Out of everything that I will be going through, this will be the most challenging for me. Everyone always tells me "oh radiation doesn't feel like anything...it's not a big deal" but for me...it's a phobia. I've been scared of any amount of radiation ever since I learned about the after-effects of WWII's Hiroshima. Now I know what you're thinking..."Maddie, please, you aren't going to be exposed to THAT much radiation and treatment lasts about 15 minutes."....that's not it....it's the fact that other cancers (breast cancer especially) run in my family and this will put me at an even higher risk to develop that later on. The last thing I want is to expose my body to potentially enduring this nightmare all over again. But I guess, that's the payment we have to make in order to gain a few more years of life, right? It's definitely a mental dilemma for me.
Anyway, the day after radiation is when my sister comes in to donate her bone marrow cells and I receive them. Then the torturous wait begins. For about 2 weeks I will be monitored to make sure I don't have any serious adverse reactions, which is always a major risk with donor cell transplants. If all goes well, I will go into the outpatient housing across the street from the hospital for the remainder of my recovery period which can range anywhere from 3 to 6 months. I will be fighting on all fronts...physically, mentally, and emotionally I will be drained. I will also be restricted to how many visitors I can get. It's going to be tough...and with all these factors flooding my thoughts lately, I need to learn to accept it and prepare with the time I've been given between now and October.
Before I was diagnosed with cancer, I had been saving up to take a trip to see London and around Scotland (where some of my ancestors are from). I've also been dying to see my family again in France. Of course, everything was put on the back burner when I couldn't afford that and dealing with cancer. With the many challenges I've endured (barely making it out with my life at some points), and the risky path that lies ahead, my friend Katie decided to make a GoFundMe to grant me this wish. So with the remainder of the time I have left, I will be traveling to the UK and France for the month of September. I am so incredibly grateful to all who donated and cannot express how much I need this going forward. When I am in the hospital, I will have something to look back on....the medical miracles that have happened this year and the wishes granted to travel and see my family.
I will not be able to write while I'm away, but I will write all about it when I return (I'll take lots of pictures I promise). I will also have access to my blog while I'm in the hospital and I can guarantee that I will be writing A LOT then. For now, I'll leave you with this and see you in October!!!
