January 12, 2013
February 5th, 2013
Why yes, in a way, it was. You see, it was two years ago today that I was given the gift of life…again. Some lady who I never met donated peripheral blood stem cells, so that I could continue living. So cut me some slack for the way I write, because I’m only two years old.
My hair has come back, but I shave it because I can’t get through the in-between stage of growing it out. I am at a healthy weight now. I was about 220 before I got sick, with too much fat. My low during treatment and complications was 140. Today, I am close to 210, & much leaner than before.
But it isn’t over. I’m adrenally insufficient, resulting in very low energy (combined with other factors). I have lost all the hearing in my left ear. I have lost some of the hearing in my right ear. I have slightly lower lung capacity. I’m very immunosuppressed. (I have no B-cells, preventing me from getting certain vaccines.) My white cell count fluctuates between low-normal & low, and I still occasionally go neutropenic. My hematocrit is finally normal and holding, but has way too much iron from all the transfusions. My platelets are about half-normal, but that is out of the scary, could bleed out for no reason range.
Then there is my gut. My abdominal area is in extreme constant pain. It makes it hard to do anything for most of each day. It is especially difficult to do anything where a bathroom that is somewhat clean may not be readily available. Some days, I never leave that room. Some days, I pray to use it. Aren’t you glad you know that?
I have kidney damage. I have cataracts. I have peripheral neuropathy. I may have slight liver damage. I was physically addicted (not psychologically, thank God) to Dilaudid until exactly one week ago. I was on narcotics for so long, that it may have caused Narcotic Bowel Syndrome, & that may be one of the causes of my horrible gut symptoms.
And I’m fucked up in the head. I have Generalized Anxiety Disorder, & PTSD. Yes, you read correctly, PTSD. The same thing soldiers returning from war-zones frequently come back with. I guess it makes sense, somebody has tried to kill me and almost succeeded many times. The difference is that somebody was me and used my own blood and bone marrow instead of guns or bombs.
But you know what? My life is awesome! Yes, I’m in debt up to my eyeballs, no, I can’t go back to work yet because of my continuing issues and being unable to fight common infections, yes, I live with my mother, no, I can’t afford the cost of basic necessities, and no…I’m not sure if I’ll ever be able to.
But I’ve got the most wonderful woman in the world, who has been by my side the entire time. She has moved away from her friends and family for my treatment. She sacrificed the wedding she wanted so she could be my wife before I was first admitted to the hospital in the 6 days between my diagnosis and initial chemotherapy. She stayed almost every single night in the hospital with me, for the many months off and on since July, 2012. She’s cooked, cleaned, shopped, laughed, cried, held my hand, wiped my tears, put up with my steroid-induced mood-swings, my Voriconazole-induced hallucinations, my narcotic-induced haze, and my anger at the hand I was dealt. She flushed my central lines, changed my wound dressings (including packing gauze in two huge surgical gashes in my leg, the pictures of which are too gruesome to post here), and has done it all with the most love and compassion imaginable.
I have a great family. My mom took us in so we could live in an actual home instead of patient housing when we moved here for the transplant. It was supposed to be about a year after transplant until we could leave. Obviously, it has turned into much more. She put us up in the Master Bedroom of her home, gave us furniture, lets me use her car, drives us places when I can’t, and on, and on…
My dad has also been amazing. He has handled my COBRA ever since my FMLA ran out and I was terminated from my last job. He moved my wife and the cats up, including storing all of the crap we couldn’t/didn’t bring in his own home, & cleaning out the old house we were staying in. He has also been someone I could talk to whenever I needed with good or bad news. He will be helping us relocate soon and give us a place to stay. He also shaved his head in solidarity with me…and that man LOVES his hair.
My brother and sister have been there for me so much too. My sister has been there for venting needs, emotional support, and threatening bloody murder on the people who almost caused me to lose insurance coverage. My brother has visited me in the hospital, every time I’ve been admitted up here. He also let me borrow his electronic drums which have been instrumental (get it?) in maintaining some level of fitness and sanity.
My Aunt gave me a dresser and the recliner I spend most of my waking life (outside the bathroom) in. She also made up T-shirts that say “Team Josh” and secretly organized for my friends and family to get them, and then blast pictures of themselves wearing the shirt onto my Facebook page one day. I also got a shirt.
There is so much more. My extended family & my friends all have done do much. My mother-in-law and the legendary Max Volume even got Rush (the greatest band of all time, yeah, try ALL time) to send me their autographs on a message to keep fighting, & drumsticks used & signed by Neil Peart!…if I listed everything people have done for me…I’ll still be writing this on the 4th anniversary of my transplant.
I’m the luckiest man in the world, because of the love I’ve been shown.
Finally, I’m lucky I have you, my dear readers. By reading and occasionally liking this blog-type-thing, you’ve let me know that there are still things that I can do.
Happy birthday to me.