I’m in a place at MD Anderson called “the learning center”. It’s full of stuff for resources on cancer along with computers and printers. I stopped bringing my laptop along – the network is usually too full to get onto.
There is a guy sitting 3 computers down from me smacking his lips or something and its making my ears itch on the inside.
I’ve been writing entries for this blog in my head for weeks, but life has been too busy and on my downtime I’ve chosen to not spend it in front of the computer.
I started a scarf for Chris’ mom in lime green before we came down here. I didn’t knit at all the 2 weeks Chris was in the hospital and started knitting again recently. I’ve grown impatient with it and want to finish it already. And now that Chris is considered to have leukemia (awareness color orange) and not lymphoma (awareness color lime green) I can knit another scarf in a much more tasteful orange color and give both of them to his parents.
I want to knit some more dishcloths for Lori & her family, whom I stayed with for about a week here.
Chris has a bone marrow biopsy scheduled for the 15th at 8 a.m. As the date nears my stomach will start to bind itself in anticipation of the results. We might get preliminary results back later that same day, or maybe not. He has a PET scan scheduled for the 23rd.
If his cancer still isn’t responding (termed “refractory” in the medical studies I’ve read) then his doctor will be looking into investigational treatments. I’m not sure what that means, maybe clinical trials.
Chris’ whole mouth is numb now. The left half went numb a few days before we left for Houston. A week later from my own research I knew that it was an indication of the cancer in his brain before it was confirmed. Because his mouth is numb he frequently drools and has no clue, then he’ll realize it and feel “like a retard”. I don’t view Chris differently or see him as being weak, to me it’s as simple as his mouth is numb so how could he know he’s drooling? I tell him that I don’t view him any different and I hope it reassures him in some way.
Thank fuck for the internet and all of the medical data available on it, researching much of this stuff on my own has helped calmed me in moments of sheer panic.
Chris is up on the 10th floor getting his IV infusion of “caspofungin” an antifungal med and some platelets before his lumbar puncture around 1 p.m. today.
The facilities are much less busy today, the coating of ice Houston received has thrown the city into a winter hazard level of operation. Schools, roads, etc closed. Patients haven’t made it in for treatment and many medical staff are unable to get here as well.
I’m hoping we’ll get back to the hotel around 3 p.m. at the latest.
Chris’ white blood cell count is 0.2 today, I’m daily amazed he doesn’t have a neutropenic fever.
Him coming out of his mental fog has helped calm me. And sleep, glorious glorious sleep. I don’t remember being this frazzled when Magnus was a newborn. In many way Chris has reminded me of a newborn, but a much larger and sick newborn.
It’s hard to imagine anything but how things are right now. It’s almost just as hard to imagine him dying as it is to imagine him in remission and done with maintenance chemo years from now.
There is no cure for leukemia, he will always be at risk for the disease to come back. Because it is so aggressive just one hidden immature lymphocyte cell can develop rapidly and threaten everything again. Our lives will never, ever be what they were before his diagnosis. There may be stages at which some of the breath I have been holding can be let out, but there will always be a cause for alarm. And that’s if, IF, he gets into remission. He should have been in remission months and months ago. It shouldn’t have fucking spread everywhere.
How horribly strange that it is now hard to imagine living in a home with my husband and my son and I. A week without a hospital or doctor visit would be utterly bizarre. A life, a routine, that I couldn’t have grasped a mere 8 months ago is now something I can’t see out of, that I can’t picture my life operating without.
I have been trying to find the words for symbols and images that give me comfort. When this life starts to feel like a weight pressing my face into gravel until I’m spitting blood and tasting the flat empty rock in my mouth, I think of a rope, a strong thick rope and it is coiled around my arm and I’m anchoring this life, I’m holding myself and my husband up above the surface of despair and pulling us forward.
ad astra per aspera 