Thursday, April 2, 2009

Holding pattern

Home from my daily clinic visit. 5pm. I go in about 10 every weekday and get home anywhere from 3 to 5. There are lots of variables. How many patients; how many nurses; how fast the pharmacy is; whether I need blood or platelets; etc etc.

I've been getting shots of Vidaza, the chemo drug to keep MDS/leukemia in remission. Two shots in my belly. The shots are painful going in and my stomach feels like someone has been punching me. Ironically, the Vidaza shots don't bruise, but there are bruises left from the neupogen shots: I do look like I've been through the wringer somewhere.

I feel not so great this week. The chemo works on me. I can control the nausea with a cocktail of drugs, one of which is Ativan. Ativan is mainly an anti-anxiety drug but it works well in cancer patients to control nausea. However, it makes me sleepy so I can't drive and I feel kind of cloudy much of the time.

Nurse Practitioner Julie came in today and said "Honestly, if I didn't know your history I would not question a thing about you." So my lungs sound totally normal but the left one looks bad on an x-ray. This has been the case more often than not since I've been sick. Sounds good, looks bad. ugh.

I gather I could be in this holding pattern for several weeks or even months. The lung heals slowly. And that's what we're waiting for. No more dinners out as the ANC count dropped to under 1. Some of the liver enzymes are still high. And those are the facts. My joints hurt when I move. I'm trying to minimize movement...ha ha.

I don't have a good rhythm for my days. It's hard to get started on a project at 3 or 5 in the afternoon. However, Peggy took me to the clinic on Sunday and we spent several hours ordering clothes for me. So I will soon have a new wardrobe; a treat anytime, but especially in my situation. Finally, just for grins, a picture of the night out with the girls.

7 comments:

gail said...

Such excitement in your faces! You look so happy to be OUT Cathi. Wonderful photo (will you identify everyone in it - you're the only one I recognize???)

Please post a new photo as soon as the new clothes arrive that you & Peggy ordered. We want to see some of you modeling your new style!

I don't have any suggestions for "getting things done at 3 or 5 pm" other than to get well!

Sending more hugs & lots of positive energy & even more love.

-gail (& the Ben kid)

Robbie Stanley said...

Hey there,
What a fun photo - your hair looks great - and so does the rest of you! Thanks for the updated info on your days. I also don't have any tips for the 3-5 o'clock hours. Movie time? One thing I've found while being stuck is to do something - anything -creative. But at that time of day being creative might mean doing a page in a coloring book. Any other suggestions?
xox Robbie

Unknown said...

Cathi
I like Robbie's suggestion of something creative - or crafty. Perhaps one of those greeting card kits?

Gail - in the photo it's Peggy and Sharlene standing behind Cathi and I'm sitting next to her.

I too can't wait to see the new wardrobe!
lots of love #2 GOT

Anonymous said...

Cathi,
You look so beautiful in the photo! Glad to see such a big smile on your face. ;o)

A big hello and hug from NYC, with Walt, Suzanne, and the kids.

Love ya, Nancy

Mags said...

What a beautiful picture! You all look very happy to be with each other! The hair straightened looks awesome too!

I'm with everyone else and would love a fashion show with pictures...after you get home from the clinic of course!

I know the holding pattern is not the most ideal situation, but you will get that transplant soon enough and your body will be super strong, especially that left lung, when it happens! Keep up the positive outlook and all the great work you're doing!

Love you and miss you!
Margaret and Craig

brianmargaret said...

Hello Cathi,
The drugs must make you feel dire but think positively - it's a temporary feeling and you will come through.
We love the smiling girls in the photo. Trust you enjoyed your week with Janet.
HAPPY EASTER
Much love from Margaret & Brian

Anonymous said...

Cathi,

How wonderful that your dear friend from England has been here with you, amongst others that have been able to come and spend time.

We loved seeing the photo of your 'girls night out' last week. You are looking fabulous!! But we also understand the constant strain and tribulations; two steps forward, one step back.

'Drive on', now that the doc has given you more freedom!!

You and your family stay in our thoughts and most heartfelt prayers.

Sara G and Tom, Paul Pistorius

PS---believe it or not, son Paul has agreed to accompany Tom on a Boundary Waters trip from July 1st-9th this summer. Paul was able to convince one of his graduating senior friends from the troop that meets at SM Old Methodist at SM Pkwy and Mission Road to accompany them. Tom couldn't be happier!! Tom said they have 4 crews of about 10-12 each headed there this summer from 91.