I’ve been hesitant to write this post, because I’ve been hoping I’d have something different to say. Unfortunately, I don’t. We’ve got no counts yet to speak of.
The first glorious day there were 15 white blood cells. Then they went away. A few days ago there were 50, and we got excited. Then they went away too. The doctors keep saying, “The Cavalry is just over the hill” (we’ve moved on to history-based clichés now) and the other day my Mom told them she hoped it wasn’t Custer’s cavalry. We know what happened to them!
The “average” time for engraftment has passed. That was T+21 and we are at T+25. But we have since learned that “haplo” match transplants like ours can take much longer–as many as 12 weeks. So Dad and I remain hopeful.
Mom is pretty down. Her feet and legs and abdomen have swollen, right out of her shoes and clothes. She is in pain, it is difficult to walk and her feet have turned black. But this, they say, is the least of her problems. Nothing they can do at this point to help that wouldn’t be dangerous after all the chemo she’s undergone. She is most often too weak to do more than sit in bed with her eyes closed. She is unable to eat– NOT because of mucositis (thank God that is gone –and that must be a good sign), but because the Celcept makes her sick. Vomiting and diarrhea are still part of the daily routine.
The work of accepting the transplant occurs around the clock. Blood is taken often. The morning’s blood work tells us her counts for the day. The evening’s blood work tells us if she will need transfusions of red blood cells or platelets that evening. Each night she receives the Celcept– it takes several hours. Then the transfusions. Regular vital signs. Mountains of other pills, all designed to keep her from rejecting the marrow, from catching an infection when she has no way to fight it. It is grim, grueling, exhausting work.
If there is no change in her white cell counts in 5 days, she will undergo a bone marrow aspiration to determine whether it’s my marrow that’s struggling to survive or her own. If it’s my marrow– that’s good. There are ways they can boost the response. If it’s her marrow– I can’t even go there.
Dad has moved into an apartment in Hackerman House to be closer to her– the one she was supposed to be released to last Friday. I haven’t seen her since Mother’s Day. I caught whatever my son had and it gave me bronchitis. I have to be a full week symptom free before they will let me in. It is driving me insane.
I have a lot of faith, and I know we have the prayers and hopes of so many people behind us. I try to hold onto that, as I grapple daily with being utterly helpless to control what is happening. Sometimes I give in a little to a cold, creeping fear, but mostly I can hold it at bay.
This prayer might seem a bit out-of-place–maybe too dramatic, but it came to mind as I was driving home the other day–it’s attributed to St. Patrick and was adapted in a book by Madeline L’Engle called A Swiftly Tilting Planet. It’s Irish, and Mom is Irish, so there’s that. And for all it’s drama, I think I’m yelling it from that quiet place–where today I am very small, and shaking my fist at an uncaring sky.
In this fateful hour
I call upon All Heaven with its power
the sun with its brightness
the snow with its whiteness
the fire with all the strength it hath
the lightning with its rapid wrath
the winds with their swiftness along their path
the sea with its deepness
the rocks with their steepness
the earth with it starkness
all these I place
With God’s almighty help and grace
between myself and the powers of darkness.