Turn Back Time

It is o120 and I have decided to try post something here. I have not been in a very good place of late. From my perspective, things have been piling up like cars on the freeway on a foggy night. My days and my emotions run high and low, scattered like the paint on a Jackson Pollack. I don't know what is wrong with me and I don't know how I will fix it. Nick has been gone all day. I am afraid I miss my boy, but, he does not miss me. I really don't care what he should be doing right now as a "normal" twenty-six year old guy. I only know that the reality has been forever changed and I was not the one who changed it. I still want to run screaming into the night and wake up from the nightmare that I am living. Everyone seems so calm and unaffected. Well I am not. If anyone thought I was...well I wasn't. I know I am not the first Mom to go through something like this, I know there are more tragic and horrible stories. Right now I don't give a hot damn about any of it.

Nick went to IPOP on Saturday morning with Kate and he won't be home until later today. Nick has started driving again and it was very strange watching him drive off to run errands the other day. It has been downhill ever since for me, as I feel that he will ultimately end up doing too much or get exposed to some nasty bugs and end up sick (a relative term by all standards at this point!!) If Nick doesn't get sick, than I for sure will because I am worried. I want to be one of those people who turn to drugs and alcohol or some other form of excess to solve their problems. I could work my way onto VH1's Celebrity Rehab show. I like Dr. Drew a lot and I think he could help me. Now where can I get some mind altering substances to take away all my worry, pain, sadness, anger, frustration, fear and grief! And anyone who doesn't get this need not reply. So here are the facts and the theories on the reasons for my madness as I choose to present them.
1. First the really good news....the results of Nick's bone marrow biopsy also showed that the marrow was 100% donor. But, here is the weird thing...on the lab paper they give you it reads "no evidence of patient DNA." I know this is supposed to be a good thing, but, it doesn't feel good to me. When I read those words it just breaks my heart. It is so strange to know that Nick has someone else's DNA coursing through him. Yes, this is what is supposed to make him well, but, right now it is hard because he is not well yet. He does not look well and he does not feel well and knowing I am powerless to fix this problem only makes me angry that he had to go through all of this hell. And this is really only the tip of the iceberg, I cannot say more, but, I feel many more sorrows than I can say here.
2. The results of the colonoscopy showed that Nick has graft vs. host of the gut and maybe skin. Most likely this accounts for all the GI symptoms he has been having, although, the bacterial infection (C. difficile) and the medicine to treat the C. diff are also likely culprits as well. Nick is still nauseous (a lot), vomiting (sometimes); he still has abdominal cramping and pain (a fair amount) and other GI stuff that does not make eating a good or easy thing. Right now I am not sure of all the ramifications of the GvHD of the gut. It can also effect the liver. The IPOP people are closely monitoring Nick's blood work for any early signs of problems. Nick must be hyper vigilant to any changes in his body and report any symptoms immediately. For now they are not treating the GvHD, but, if the symptoms worsen, they will have to treat. This will most likely involve giving Nick steroids and possible anti-rejection meds, which will once again predispose him to a greater risk of getting infection. GvHD is one of the major complications of having a BMT and depending on the severity of the symptoms can lead to very serious problems.

I need to turn the clocks back one hour...I wish I could turn them back a lot farther than that. I wish I could turn all of our lives back the way they were. I know that I cannot; and I wish I could begin to tell you how horrible that feels.