Friday, June 23, 2006
This evening I watched a public television special about children and their families with cancer. Of course three had leukemia and of the 5 children features, 3 die. The film makers did not mean this to happen, the families were picked at random, but the f-ing cancer just kept wearing the patients and families down. What was hard was seeing myself in so many aspects of the parents, and then seeing John not wanting to give up and die, the mom not wanting to give up the fantasy that her child was going to get better and then of course the Dr. Doom and the nurses who have seen this scenario over and over again, only to see a child rally against all odds then still die because the hope of the patient and parent have to try all options.
After watching this I put on a video of John that some grad students made with John and others to help bring awareness to the need to join the bone marrow registry. God John looked good at that time, he had just returned to school again, the mylotarg had not done its damage, and we were still searching for a better match or at least a place we could do the mismatch we ended up doing...and then it not curing my John.
I remember praying to God to not bother finding a match if it wasn't going to cure him because I did not want to see him suffer anymore, he hated the throwing up, but in comparison to the children in the film John really did suffer less, and John did not want to give up...and I could not...I still can't. I still pray for a redo, to wake up and have John back, whole and off being a man, he would probably be married by now knowing what a sentimental sweetie he was.
So what do I do when I feel this way? When I am so beyond sad I cannot even imagine crying? Well I day dream about getting stinking drunk, so drunk I really do not care anymore. What do I do really? Well tonight I made a concoction of brown sugar, vanilla and a little butter. Then I feel shame for being so weak not wanting to face my sorrow, feel pity that another day passes and I blew my diet, again, and then give up and go to sleep.
After watching this I put on a video of John that some grad students made with John and others to help bring awareness to the need to join the bone marrow registry. God John looked good at that time, he had just returned to school again, the mylotarg had not done its damage, and we were still searching for a better match or at least a place we could do the mismatch we ended up doing...and then it not curing my John.
I remember praying to God to not bother finding a match if it wasn't going to cure him because I did not want to see him suffer anymore, he hated the throwing up, but in comparison to the children in the film John really did suffer less, and John did not want to give up...and I could not...I still can't. I still pray for a redo, to wake up and have John back, whole and off being a man, he would probably be married by now knowing what a sentimental sweetie he was.
So what do I do when I feel this way? When I am so beyond sad I cannot even imagine crying? Well I day dream about getting stinking drunk, so drunk I really do not care anymore. What do I do really? Well tonight I made a concoction of brown sugar, vanilla and a little butter. Then I feel shame for being so weak not wanting to face my sorrow, feel pity that another day passes and I blew my diet, again, and then give up and go to sleep.
