We finally got to meet with the physical therapist, Linda, a week after leaving the hospital. She didn't have anything new, but reassured Krista that slow progress is normal and that she needs to listen to her body as to how much she can do. She kept mentioning that Krista's recovery is going to be faster than it would have been otherwise, since Krista had been running before the treatment. Linda says that Krista should write down her exercise that she does each day -- and by "exercise", she meant not just stretching and walking, but sitting, standing, and going to visit doctors, too. The goal of writing it down isn't to make sure she's doing it, but to keep her encouraged because it's difficult with chemo-brain to see progress in yourself.
And that was exactly where Krista was today, she just couldn't see the progress. She was frustrated, teary, and just wanting to go home. The emotions were really strong but not completely in line with what she was thinking, and it began to feel a little crazy to her. And then she remembered that the gynecologist had her on a double-dose of progesterone to stop her bleeding. The bleeding had stopped late last week, but I was faithfully giving her what was ordered for her. We had a scheduled office visit with Dr. Schiller today, so we added that question to our ongoing list.
Before the office visit, we first had to do a blood draw for labs. The nurse there noticed that Krista was feeling badly today, so she took a lot of extra time to talk with her and comfort her. The office visit appointment was more than an hour after we finished the labs, so Krista wanted to get away just for a change. We took a break in the cafeteria, and got onion rings and a coke just to get a little tasty treat as a distraction. Glen and Janelle joined us there and helped us finish off the onion rings and had a nice conversation together before we had to be off for the appointment.
They take vitals before they put you in the exam room, and that means temperature, blood pressure, and weight. Temperature and blood pressure were unremarkable, but Krista had shed 11 pounds of water weight since she left the hospital a week ago! You go girl!
In the exam room, we first met with a doctor who was unfamiliar to us. His badge said that he was an exchange student, and I think he was there to get some experience with the basics of an office visit. He went over our lab results (platelets 22,000, red blood 8.5) and checked the current state of Krista's symptoms. Then he left to get Dr. Schiller for the rest of the exam. He returned with Dr. Schiller and another doctor who we met with before the transplant. Krista recognized him and remembered out loud that his first name was Micky. Dr. Schiller was surprised that she remembered him that and said that it was a sign that her brain must still be working after all that chemo.
So here's the results of the exam:
1) The on-going jaundice is because the O-negative immune system is slowly killing off the old A-positive red blood cells. The liver breaks down the dead red blood cells, producing bilirubin. This is not problematic, but it does mean that Krista needs occasional O-negative red blood transfusions to replace the depleted A-positive ones until the red-blood factory gets going. She'll be getting a transfusion tomorrow, and a bag's been ordered already for it.
2) Three sets of pills are no longer needed, including the extra progesterone.
3) The rash on her hand is Graft-Versus-Host-Disease (GVHD) and the doctor wants to keep an eye on it. Her doctors in Santa Barbara aren't familiar with GVHD, so she can't go home yet.
4) When can we go home? If the rash gets worse, we're to come in Thursday and he's going to need to increase the immune suppressants. But, if the rash stays the same or improves, we're to come back Tuesday with our bags packed!
We felt such a huge sense of relief. Now, at least she has a target, and that target is just the motivation she needed to keep going. We had a little celebration time with pizza upstairs in the hotel's breakfast room. It was a nice excuse to not eat in bed for a change. Glen and Janelle had enjoyed D'Amore's Pizza in Malibu and discovered there was one just down the street here. Janelle raves about the crust. Glen walked down there and brought it back. The crust was incredibly thin, but not too crispy. I liked it enough to eat three pieces. Krista almost ate a whole piece, which was pretty amazing considering this was a new food to introduce. Having less pills with dinner probably helped too.
After dinner I called the boys to say goodnight. Trevor and Adam were feeling better and had just got back from a bike ride. Adam mentioned that his armpits were itchy. I thought it was because he had been sweating from the bike ride, but Alyssa clarified that he actually had a rash. She said that scarlet fever has been going around town, not from anyone that she knew of who Adam had contact with, though. They're going to the doctor tomorrow to see what's going on with him, just in case. She also said that the incredible ladies from her bible study came over to our house the other night and dusted and cleaned. I'm sure it needed it, but I'm just floored by the generosity. Thank you so much!
This was Glen and Janelle's last day with us before they head back to Colorado tomorrow. Thanks for spending the last month out here with us. We'll miss having you around! We'll keep you up on how things go, as we press on toward our new target: getting back to Santa Barbara.
I'll close with a little extra inspiration from the apostle Paul's journey toward making his righteousness in Christ tangible:
Brothers, I do not consider myself yet to have taken hold of it. But one thing I do: Forgetting what is behind and straining toward what is ahead, I press on toward the goal to win the prize for which God has called me heavenward in Christ Jesus.
(Philippians 3:13-14)
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