John took Ryan with him to Prime today, so my alarm clock this morning was Ryan crawling into bed to give me a kiss goodbye. This week at Prime the daycare is doing theme days, today is “hat day”. We sent Ryan with his Cards MVP hat, but he doesn’t seem to want to keep a hat on for very long. I’m just hoping he comes home with it. Some of his art work is also displayed in the building, his proud papa took a picture and sent it to me today.
I had to be at the Dr. at 8:15 this morning, so Amy came to pick me up at 7:45. The plan was to get labs, which involves them taking me to the lab to prick my finger to get a small blood sample, then going to a different waiting room- waiting room #2. From there, a RN calls me into a small office to go over my numbers and then they send me down to outpatient with my orders for the day. I knew right off the bat this morning was not going to go smoothly….
First off, the guy pricking my finger says that my orders for the day say I’m to be admitted to the hospital as an outpatient to get my chemo for the day. I tell him, noooo I’m just supposed to get my labs and if everything is cool I go down to “normal” outpatient, which is on the second floor of the same building my doctor’s office is in. All of this is occurring in the Hulston Cancer Center, across the street from the hospital. Not at all the same. When the RN calls me back to go over my numbers, he doesn’t know what’s going on either. He also tells me last time I was in my ” hgb was barely high enough to sustain life” and that I am on all kinds of “weird chemo and meds”. I told him I guess I don’t know what’s normal. I told him I had a hickman, he said no, I have a port. I said, no, it’s a hickman. I couldn’t understand half of what he was saying when he told me my counts for the day. He said he wanted me away from everyone since I “don’t have an immune system”. Not my favorite person to deal with, hopefully next time I get someone (anyone!) else. They ended up taking more blood, out of my arm this time, to test my (?) levels (something about blood clotting) to make sure I was able to get the chemo today. Dr. Ellis wanted to talk to me too. He said I was wonderful, that I never tell him I don’t want to do things. I didn’t know I could say no 🙂 We planned out the rest of this round and the beginning of the next. I did tell him I didn’t want to do a spinal tap and a bone marrow biopsy on the same day, that may be kind of rough. We still didn’t have the blood results done when we got done chatting, so he told me to go to lunch and come back in a hour. I called Amy and we had just what I needed to cheer me up from wasting 4 hours of my life waiting… sushi! We went to Umi and we just couldn’t quite finish it all, even though it was delicious.
I got back to my doctor’s office and waited for a few minutes more for my orders, the blood work turned out fine. I got down to outpatient around 2. I am getting one kind of IV chemo and a neupogen shot, since my WBC was kind of low. Here were my counts for the day:
I will have to come back to outpatient the rest of the week to get neupogen shots. The problem is I’d like to do it early in the morning and you have to wait 24 hours in between them. So, since this day has taken so ridiculously long, now I get to do them at 2PM.
I got home around 4 and had time to go organize some mail & make tacos before my boys got home. We had dinner then went downstairs to play until bedtime at 7:30. John went outside to mow around 7 and should be wrapping that up soon. Time to relax for a bit! Ryan is going to go to Prime tomorrow again, it’s favorite color day! I decided his favorite color is green when I layed out his clothes for tomorrow. 🙂