Friday, May 22, 2009

Ups and Downs

After a splendid day off Thursday, I arrived at the clinic this morning to a nurse Gayle's quip "haven't seen YOU in a while." hahahahaha. The clinic was understaffed and overworked this morning. I ended up in a room with a recliner (I usually have a bed which is more comfortable for some of the long days I am there.) The fluid before the Ambisome was started and labs drawn and the nurse practitioner arrived all about the same time. Mary was surprised to hear about the every other day plan for the Ambisome. And she changed it. Every day for the next 2 weeks. ugh. Wendy made the appointments and I pouted.

Gayle wanted to know "why?" She said "nothing changed about your CT scan did it?" So since I was glumming she got busy. I also had a bone marrow biopsy today which screwed up the schedule. I could not get blood before the test and the platelets had not arrived. (This is where I tell you that I was at the clinic for 9 1/2 hours today, a record I think.)

When I returned from the biopsy Wendy was waiting for me and said the pharmacist recommended that the Ambisome be continued every day; he didn't think it would do any good to get it every other day. She was giving me more details when Mary came in behind her and said "We changed it again." We're going to switch you to posiconazole (oral anti-fungal medicine) and have you come in every other day for labs. We may not start the Vidaza on Tuesday because we think you may be ready for transplant. Dr. McGuirk thinks what is left in your lung is probably scar tissue so we may be heading into transplant and we don't want to give you Vidaza if the transplant is that close.

Now keep in mind that you're getting this in 3 short paragraphs and I got it over the course of a day that included setting appointments for every other day, then every day, then back to every other day. I resorted to chocolate from the candy machine when I went to get the biopsy...I simply did not know how to feel. It still hasn't soaked in completely.

Finally, Wendy called the posiconazole into the pharmacy and they were out. As were the other pharmacies we cancer patients rely on to have "our" drugs. So then the doctors decided that I have enough Ambisome in me to float a battleship and I can wait til Tuesday to start taking the posiconazole. Go figure.

Meanwhile I phoned Lisa, tomorrow's bride to let her know I would miss the rehearsal this evening and as long as she didn't have me walk down the aisle first I would be okay. She said "oh no, honey, you're last. So you can sit down with my mom if you get tired standing up there." How considerate is that?

Yesterday was just wonderful. I caught up with a little correspondence, did some laundry, messed with the iPod and the treadmill again (still didn't figure it out....) This morning I did not want to go. I wanted another day like yesterday to relax in. So all in all I'm fine. Just fine.

Cathi

2 comments:

gail said...

I gave pole position and Cathi is up LATE! What a day you had - 9.5 hours???? Yikes. Nothing like being on a bungee cord... up and down all day. Has anyone figured out they need to talk amongst themselves before giving you such glum news?

BUT YOU'RE HOME AND YOU HAVE ANOTHER FREE DAY. Woooo hoooooooooo.

I bet you could have let loose on them with a diatib (my w/v today)!

love and many big hugs,
-gail

Diane said...

Cathi,
You look Beautiful. Thik of you often.
Love
Diane