I know I haven't sent an update in awhile. It's been a rollercoaster ride here, on all levels. I'm sitting at one of the "shared community" computers trying to bust this out before they call me into my next appointment.
After we got the good news of the marrow grafting, all sorts of complications and not-so pleasant things started happening all over and inside my body. Sometimes they were annoying, like random hives on my skin to downright excruciating pain in my abdomen. It felt like i was going through some weird intratransformational restructuring from the inside out. I've been to the emergency room a few times, had my medications switched and turned and re-dosed and changed again. I've been saved by a few transfusions along with lots of TLC. Because my blood levels have been so low for such a long time, it is taking a cumulative toll on my body. Blood feeds, cleans and connects EVERYTHING and when that system has been run down for so long... well, it's just not very fun.
But I am just so happy to be alive and breathing today. I am tearful every morning when I see the sun and the trees outside my window. Another day. Another gift. Another inhale. I've lost a few friends here during my stay. Each one a beautiful soul. Each one hoping, hoping, pleading for 'just a little more time' to be. To just be. There is no fear of death here. Only the fear that the life you planned for or the love you hoped for will never be.
Here you will often find yourself face to face with a stranger, but a stranger you know very well, because you both can hear the clock ticking and you don't know how much time you have left to live and love. A lot of my day is spent with other patients and their families, holding hands, answering questions, soothing anxiety with much needed hugs and... just being there for someone who needs someone who has been there too.
In a couple weeks I wil have another "graft test" done. Why? I asked the same thing. "I already have 100% graft!", but the doctor just nodded and said, "Yes, but sometimes things change". In late October I will get the BIG test, the PET/CAT scan that will give us a more definitive answer to my prognosis. We've beaten the odds thus far, but there are a lot more odds to face in the coming months. My next goal is to make it to New Year's Eve. Even in recovery, uncertainty still lays heavy. Right now it remains coin toss.
So each day continues. This fight. But I am trying to do good while I'm here. I'm still helping to spread the word, set up marrow drives and help with fundraisers. By the way, "Cinema Secrets" and In'n'Out burger have teamed up for a fundraiser/marrow drive at the end of October to benefit my foundation and help my friend Jerome. It's going to be huge. We'll be speaking at the event. Hope to see you there.
More updates. More often. I promise. The last two weeks have just been too hard. Wish I had a personal assistant. :)
P.S. I visited the blood donor center here yesterday and was told that they are in great need of platelet/blood donations. If you feel like doing some good, save a life and make a real difference, they could surely use your help.