
Since my transplant in June of 2016, the title of this article is just what my life has been, halfway between the hospital, and my home sweet home. I'm stuck in this delicate dance where one day I feel great, like I can take on the world. Days where I almost feel like my old self. Almost. Then like a hypothetical 'about-face', my world shifts. Here comes the bone aches, and the muscle aches, and the tight blistering skin. Those are just the major pains. There in lies the roughest part of a bone marrow transplant. The transpant itself is not the hard part. Its everything that comes after it. I'm basically an infant on the inside and a 27-year-old guy on the outside. You don't realize how filthy the world is until the smallest little infection could have you pushing up daisies. So that is my life now. Halfway between the hospital and home.
I'm constantly trying to stay in tune with my body. Feeling and monitoring for fevers. Trying to notice new symptoms. As I've said before, GVHD is a constant battle. A ten-round heavyweight bout. I beat one problem and along comes another. As I've written before, the first form of GVHD I went through was GI related. Then it was my skin, then eyes, then mouth. I've had 'em all. Most of these forms of the GVHD put me in a hospital bed, one way or the other. Right now I am battling with stomatitis in my mouth and throat. It forms lesions all around my tongue and cheeks, as well as down my throat. They make swallowing an impossibility so I get behind on my meds. Most days I am nowhere near my target caloric intake. Its all liquids for me. So with no nutriotion and none of the dozen and a half meds I have to take everyday, some I take twice a day, guess where I end up. The hospital.
Its part good and part bad. I am glad there is a place where I can go in my fragile state of health and get 'tuned up' as one of my Nurse Practitioners calls it. Sometimes, I need to have my medications administered through my tunnled catheter. I can't very well do that at home now can I. So I need to be admitted for IV nutrition, fluids, and medications. The bad part is being away from my family. My fiance and my two beautiful children. Seeing that look of disappointment on my daughter's face when I tell her I have to go into the hospital for a few days, it kills me every time. The other day I was dropping her off at her day school and I was telling her that I had to go into the hospital to get a special medicine. She is four-years-old so I didn't think she knew the concept of death so when she asked me, "Daddy, are you going to die?", I was floored.
So this back and forth from hospital to home is not only affecting me but it is very hard on my family. Not knowing if Dad will be there from one day to the next has got to be discouraging. Fighting cancer is a full-time gig for anyone who has it and anyone real close to someone who has it. I have to take every day as it comes because each day comes with it's own set of challenges and obstacles. Even though I'm half home and in the hospital, I'm giving my whole effort to beating this because I have a beautiful fiance and two beautiful children who I intend to see grow up. No cancer on this planet could keep me from that. So remember, live every day like its your last and celebrate the small victories. Try not to focus on the big problems because healthy or not your world could change in an instant. Cancer doesn't care who you are or how much money you have or what you do for a living so appreciate your good health if you've got it and please, celebrate the small victories.
All this talk of half and whole and pieces is making me hungry for pie. Pie can make anyone happy am I right?
