we just took our daughter and friend to the harry potter wizarding world. her bestie had surprised her with tickets for her birthday, and to celebrate the culmination of her reading the series. most of it was magical and exciting and like a fantasy! she was chosen by a wand at ollivander’s wand shop. the witch who bestowed it upon her told her the wand chose her for her courage and creativity and kindness. it was a beautiful milestone moment to share. both girls loved sharing this incredibly imaginative world.
but the real part of the park the girls were looking forward to most was the 3d thrill ride. did i mention that i’m not a huge ride person? i’ve had more than enough excitement in my life and thrills and spills are not my thing at all. i was told it didn’t really have any huge dips or spins like a roller coaster or other rides.
the ride started with a magical tour of hogwarts castle. truly, a fantasy come to life for fans of the book and movies. as we were guided to our seats and strapped in, i made sure to sit next to my daughter. but i realized that though we were all in the same 4 seat row, we were isolated from each other by full length barriers which prevented us from seeing each other. i reached around the barrier and grabbed for my daughter’s hand, as we started to move. at first i saw a beautiful 3D screen and within seconds, we were flying through the air with our chairs nearly turned upside down and whether real or perceived because of the 3d effects we were spinning at a fierce speed twisting and turning as we soared over the mystical world of harry potter through dementors and whomping willows and giant spiders. they underestimated, and i underestimated the drama of the ride.
of course the minute we got off, the girls wanted to go again. i sat that one out. i think i mentioned before.. i’m not a ride person, but i hate to miss out on doing anything with my family and i’m pretty much willing to try all kinds of things out of my comfort zone, just to ensure i’m really living life with my family and enjoying every moment with them.
my love for my child forces me to confront all kinds of fears without even thinking about it.
a clinical trial is no guarantee of anything. you are basically an astronaut. you are going into unknown territory. on that adventure you may make amazing discoveries that not only change your life, but the lives of so many others. it’s also incredibly dangerous to pioneer something new, and the unknown can be physically dangerous, but it can also be emotionally overwhelming.
i decided that i would engage in my astronaut adventure of a clinical trial because it might prevent my disease from progressing, which is an incredible and never-experienced opportunity. it could prevent disability, death and life-threatening treatments that negatively impact the normalcy of my daughter’s childhood.
i went into it the way i do most things, with guns blazing, warrior woman, ready for a fight, ready to do what i could to share life with my family.
first, there was the up. after an incredibly successful phase I with my numbers plummeting to half their dangerous levels, i was elated and felt free. i knew i could manage this disease and the side effects and continue to enjoy my life with my family.
then, as per the protocol, the dosage changed, a little more scary, but freeing! i would not have to go the hospital weekly anymore. i could go out and live my life on my own terms even more. in fact, we could even move to ensure my husband kept the job he had taken for its wonderful benefits package.
at my next appointment, i was thrilled when i was told to prepare for another bone marrow biopsy to explore the possibility of a response that might even be described as a remission. i was on a huge high now! at the pinnacle of making the most exciting discovery of my life.
then, only a week later, we had arrived in our new town, i was trying to get my bearings, find a home, get my child settled in school when i got a call from the trial nurse and was told to have more blood drawn. there had been a mistake at the lab. my heart took a nosedive, my stomach flew up into my throat.
when the lab results arrived a week later, i was told not only was i not in any kind of remission, but in fact, my previously plummeted numbers were rising at a fairly steady pace. and i could barely hear as she told me. my ears echoing with the sound of the wind wooshing past, my whole life speeding past me.
i had another month before my next tests and my consult with both my specialists. it was a very long and agonizing wait, a slow and tortuous climb to what i feared would be another vomitous dive.
when i did meet with my specialists, they were more optimistic. one stated that the numbers were climbing, but over time, we might find it was merely going up and down, like a range, on a roller coaster, but ending up in the same place. the other said while my numbers were increasing, that he still felt i could be considered stable at least for a time and, that was good news. so, the drug may actually help keep me from progressing which would be amazing and huge not just for me, but for so many. but we had to discuss what happens if this increasing trend of rising numbers is real and consistent, and the dosage doesn’t appear to keep me stable on its own. also, the trial only lasts 2 years. so, what’s next? and how soon? of course, this was good news. but discussing the big picture, my victory suddenly felt so short-lived. going from believing i was so close to remission to realizing the wild ride ahead was emotionally overwhelming. and even though i realize this disease is incurable, i really believed i would be one of the first wave of patients to go into remission before ever progressing, and i pray i still may be. so maybe i was a little disappointed. it’s not that i’m delusional or not grateful, but maybe my expectations were too high.
regardless, what i realized is that i don’t know where this ride is going. i don’t want to get off the ride of life, and so even though i may find myself having to sit one out and have a butter beer from time to time, i know i have to prepare myself to get back on. and that i won’t know what’s coming next and that it won’t stop.
so lately, i’ve been a little overwhelmed and sickened. in my head and my heart more than anything. and i felt that i was being pessimistic or at least less plucky and optimistic than my usual self, but i’m not…..i just realize that i’ve gotten on the roller coaster and for the first time i’m seeing the real ride that’s ahead. this disease is the ultimate in realizing how little control you have over life or even the simplest of plans. i have to enjoy the thrills and be prepared for the spills. i may never love it, but i will keep getting on and holding my daughter’s hand.