I have so many fucking questions swarming my brain and no idea when any of them will be answered or even if they can.
Does this mean that he has to get a stem cell transplant? From my reading of clinical studies of lymphoblastic lymphoma and hyper-cvad regimen I know that the fact that he is not in remission after 5 cycles is not good at all. It means his prognosis is worse.
Basically patients have something like a 90% chance of going into remission after 2 cycles. His cancer is not responding to the hyper-cvad chemo, which is the newest and best treatment for this disease.
Fuck. FUCK.
I’m tired of waiting. I’m tired of hospitals and mostly I’m tired of my husband being so tired. We haven’t had a real conversation in something like 5 days because he isn’t capable of having a conversation. He’s asleep most of the time and disoriented when he is awake and most of the time I have no idea what he is talking about, the few times he does talk.
We were eating lunch when the Dr. came in and told us about the PET scan. Actually unless I asked him about the PET scan I don’t think he was going to tell us about it, he seemed reluctant to tell us. Chris started crying after the dr left while he was trying to finish eating his rainbow sherbet. He said he wanted to be left alone so I went to the family waiting area and called his mom and told her the bad news.
I also told her that they may want a lumbar puncture test (spinal tap) because it’s possible the numbness on half his mouth indicates that he cancer has spread to his spinal column/brain. BUT the dr. did say that he didn’t see any indication of it there on the PET scan.
I talked to my son briefly, he is so bubbly and bursting with life. If I were him my face would hurt from smiling so much. I love him so much. I can’t even begin to imagine raising him without Chris.
Chris has slept most of the day, most of all the days here. He’ll mumble in his sleep.
I napped briefly and then woke up needing to get out of his room. This hospital is so huge so I walked all around and then stopped on the first floor to visit the library and checked out some books.
The shuttle’s last run will be around 8:30 so I’ll be leaving in about 2 hours to head back to the hotel.
I feel numb, I feel like I should cry in a reaction but I just feel numb. Numb and full of unanswered questions.