Along with all the other nasty side effects of Mom’s drug cocktail, let’s add another, wild and wooly one to the mix: extremely vivid and bizarre dreams. Yesterday she had one in which Sasha Baron Cohen appeared in her room, told her it was time to get out of the hospital, and he loaded her into a van waiting downstairs. Mom is definitely NOT a fan, and I think it might have been a little disturbing to see Cohen by her bedside, particularly in his latest incarnation as The Dictator:
It is time to leave this place…
Not to mention being bundled off to goodness knows where.
But more disturbing is the limbo she is resting in…with “resting” being a euphemism for suffering. Friday night she found out why mucositis is called mucositis. We just were told about the excruciatingly painful mouth sores. And they sort of look “mucosy”. No one mentioned that the sores will suddenly produce so much mucous that she would wake in the middle of the night with it running out of her nose and mouth– that she would be afraid that she was choking to death– that they would have to vacuum out her mouth, and leave her with the little vacuum attachment in case it happens again.
We ache for some good news. We’ve been given no bad news…the status is “you are where you are supposed to be. It will get better”. But we haven’t heard anything about counts in a while. I think that’s because she hasn’t engrafted fully yet, and the counts are just bouncing around. So we worry.
A person we know who went through a transplant two years ago with a fully matched donor was released to IPOP on T+19. Mom was scheduled to go there this Friday, but I don’t see that happening. I panicked for a while last night until I could get to a computer, and I read that people who have full-match transplants usually get out of the hospital after 2-4 weeks. Allogeneic transplants like ours can take 4-6 weeks.
I haven’t been able to personally visit since last Sunday. My son came down with a fever of 104 last Wednesday– some weird kid virus, but we can’t run the risk. He’s better now, and if I don’t come down with anything, I’ll see her on Saturday. Dad has been holding down the fort at the hospital. This weekend he finally got a recliner for Mom’s room.
That’s been a saga. When Mom was admitted, all the other rooms were full. There’s truly an imbalance in the furnishings in each patients room on this ward. Some have recliners and flatscreen televisions and an Xbox. Mom’s room is a holdover from another decade– with the 19inch fuzzy tube TV and a “sleep chair”– a hard as a rock monstrosity with no support. If you’re trapped in a room indefinitely, it shouldn’t be a big deal to have one comfortable chair. But, daily one of us would speak to the nurse (or in Dad’s case, anyone whose attention he could get in the PACU) and they would say something like, “oh….wow…well, we can look into that,” or “lots of people really prefer the sleep chair! People are always asking for it.”
Indeed. Well give it to them. We are more than happy to trade. To no avail.
The tide finally turned in our favor on Saturday. Dad was walking with Mom while she was doing her laps. They noticed that room 16 had TWO recliners. Once again, they spoke to a nurse. I need to ask Mom this wonderful nurse’s name, because SHE did not give a vague response. She went out on an immediate scouting mission and found something better than having a confrontation with the patient in room 16 over inequitable distribution of hospital wealth– she found someone with a recliner was being discharged and she and a tech snagged the recliner out of that room. Easy, peasy. Only took 22 days.
I want to give a shout-out to my Father, who has shouldered so much of this on his own; who comes home every night to an empty house, but has remained strong and even cheerful despite the unceasing stress of this situation. I want to thank my husband Lon, too. He’s completely rearranged his work schedule to include nights and weekends so he can care for our son until school is out. He’s doing a terrific job, and even though our boy misses Grammy, he’s having fun with his Dad.
For our wonderful friends and family who say, “let us know if you need anything,” I’m going to let you know we need YOU. We appreciate phone calls and emails. We might not dial you up ourselves, we may not be able to take your call– but we’re so overwhelmed by the moment that we can’t do the reaching out–if that makes sense–so please don’t wait for us. Hearing from you lifts us up. And if you’d like to make my Dad a casserole, or stop by and play with the boy, or sit with any of us for an hour in the evening, we’d like that too.
I asked Mom what she wanted to convey tonight in the blog and she said to let everyone know that the process she’s going through and the uncertainty are a little like being in hell. For all of you “don’t say anything negative” folks, I have to say– positive thinking is a force to be reckoned with, but sometimes its OK to be damned mad. Clarity and Courage folks, are equally powerful tools.