What a whirlwind it has truly been since leaving Moffitt to come back to my parents home in Bonita Springs. Although liberating for the most part, it is adjusting to the new normal that seems to have me “stressing.”
I have to remind myself continuously that I have finally been freed from the black cloud that hung over my head a week or two before monthly visits to the oncologist back in Baltimore. Have a gratitude that I had a sibling, perfect match to donate marrow and do the T reg trial to prevent the most common complication, GVHD. That I overcame acute liver failure and that even in my darkest hours which I have little to no recollection of but remembering to breathe, my soul fought hard to bring my body back to life, to get to this place and the many places I will go from here. I have to remember that there is a bigger purpose in all of this, that this is truly the journey to the “One and Allie.”
BUT…..to say all of this is not “easy” would be a huge understatement. This is not for the weak. Truly. My fellow warriors are INSPIRING, as you have to want to LIVE and fight for your future.
I remember the stress of the leading up to the transplant. It started with choosing where to have transplant, it felt like I remembering thinking, “I am entering the Wild Wild West.” Funny enough, we do manifest our own thoughts, the Moffitt transplant unit is 3 West and 4 West. The 30 days leading up to the transplant were filled with meetings and classes about the could happens, would happen and dos and donts post transplant. (sadly they breezed over Venus Occlusive Disease) All these classes were necessary but certainly daunting when I look back. However, I would not accept defeat and I knew I would prevail, even if it meant going dark for a few days on Defitelio (the drug used to reverse my VOD).
Those days feel like ages ago, as the truth is, as of late, as my body resets itself and becomes 100% Tony, I have daily struggles. Most recently the forefront of my struggles has been with mood swings as a result of hormone therapy given in high doses to preserve my fertility. As a woman this was one of the most heart-wrenching conversations to have at the age of 32, but it had to be done prior to the transplant. Unfortunately the aftermath of hormone therapy in high doses can last anywhere from 3-6 months post treatment. We are at month 1.5. My mini-meltdowns over some of the most minute details of daily life are disappointing, as I do not like the feeling of not having control of my emotions. 2019 will bring lots of balance in this department. Salut!
I also at times find myself fighting exhaustion from disrupted sleep. This is most likely as a result of my immune suppression as well as being in the hospital for so many days, only sleeping for maybe 3-4 hours at a time. I have even started skipping my afternoon snooze most days with hopes my nights will have better, more restorative sleep.
My skin, the initial stressor post transplant, has turned into an art project. The bumps have gone away thanks to a dynamite dermatologist down here in Bonita, but I am peeling this beautiful (ha) “Busulfan” tan from one of the chemos still. At times it is hard to even recognize the person I once was, at a 121 lbs of splotchy skin and bones, the larger than life, loving and always laughing Allie seems a distant memory most days. I know soon enough I will be smiling again more often than I am sad, that I am truly in the cocoon, waiting for my butterfly wings to fully develop, shedding the old skin so I can fly to places much happier than these mood swings, mini-meltdowns and many sleepless nights. I will fly to places where I am free of cancer reminders, free of fear itself, and free of formidable stress.
This too shall pass…..and in this moment I am grateful to share my story and to be here to tell it now and for the many days to come.