Since I felt well enough to travel a little bit, we all took a trip to Tomball to see my aunt Daphne today. She’s living in an assisted living complex there, but may have to move because of a recent incident. She’s taking hydrocodone for pain, and I blame it entirely for any erratic behaviors she may be exhibiting. Apparently she’s been knocking on neighbors doors late at night when the train goes by or when she doesn’t get an immediate response from her caregiver who comes when she pulls a cord.
Hydrocodone is one of those medications that I believe can make you rather paranoid, if you take it long enough. And I think she’s been taking it long enough. I had much better luck with Ultram, but it takes more effort on the doctor’s part to prescribe it. Something about triplicate forms.
Friday was one crazy long day at MD Anderson. We arrived at our usual time at the Diagnostic area to give a blood sample. Once again the phlebotomist didn’t know that I was “holding” my cyclosporine until after the blood draw. I decided to put my foot down and ask her to call my team to set things on the right schedule. I had this feeling that my cyclosporine levels hadn’t been check for almost two weeks.
Next, we were on our way to the 10th floor where we proceeded to wait almost an hour and a half for a room. At 12:30PM, I joked about starting a riot, but didn’t get a lot of energy for or against. People were just too sick to fight back. Finally I got a room. The three of us–mom, me and Jacob–snuggled into the room. By this time, I’d started to get a migraine again. Very discouraging. I prayed. Turned out the lights. Thought of what pills I could take. But nothing was working.
When the nurse who sets up my Magnesium drip arrived, I poured out my woes to her. Fortunately, this brought my team. I now have a new Pharm D named Jamie and Lynn, my APN, was back from vacation. I explained what was going on with the migraines. Lynn had already ordered two units of blood for the day, since my hemogoblin was low again. Lynn suggested that lack of oxygen from low blood may be the reason for the migraines of late. That made sense to me, but she also asked if it might be sinusitus. I agreed it might be related, so they’re going to do a CT scan on Monday to check for that. Frankly, I’m glad. If I have a sinus infection, it would certainly explain some of my symptoms.
So instead of just taking the usual migraine meds for the headache that came up today after my visit to Aunt Daphne, I also took a sinus med. It actually helped and gave me some relief. So Lynn may be right. We’ll see on Monday.
Mom leaves tomorrow for Santa Fe and it’ll be just Jacob and me again. I’m surely going to miss her. Kirk is home nursing the cat back to health. He’s eating wet food now and appears to have ripped out all of his stitches (which he wasn’t supposed to do…by the way.)
Meanwhile, I am actually started to feel like my old self again. It’s great. I can watch stuff on television without crying and food tastes good to me. I still don’t eat as much as I did, but I wonder if I ever will. Food just isn’t that important to me any more.
I’m hoping the infusion of extra red blood has done the trick and pray that I won’t need more again on Friday again. I would really like to get off this Cyclosporine. Slowly. The way they talk about doing it when it’s time. Whatever the case, I’m feeling stronger these days. Maybe I’m sleeping more. Anyway, I just thank God that I’m heading in the right direction. My hair is growing and people say I look healthy. That makes me feel so good.
Thanks to all of you sending cards and letters. It means a lot. It is very difficult to go through something like this and your cards and letters let me know you care. (The address is on the right had side in the messages section of the blog.) Call if you like, as well. My cell has the number for the apartment land line on it. If I don’t answer my cell, please use the land line. There’s always some good reason I can’t answer it. Rarely, I’m just too tired. But most of the time the reception on the cell is just not good or I’m running out of minutes on my cell.
I continue to ask and desire for you all to pray. With no signs of GVHD, I know God’s intervention due to your prayers is a big part of the reason. August is still wide open as to a caregiver. Maybe it’s just God’s will for me to be here alone Monay through Thursday. Right now, I’m pretty sure it would not be a good thing. But in August…who’s to say how I’ll feel?