Thursday, June 25, 2009

Hats are good


I arrived at the clinic this morning and took a seat in the little waiting area. Amy looked around and asked "4 or 5?" speaking of the treatment rooms. Then she stopped and said "How do you feel today?" my answer was "pissed off." She said well, okay and I went to room 5.

I told her I needed a hat today. Nurses at the clinic often wear hats. Amy wears them when she doesn't really want to be there (several days a week.) I chose the sunflower, then borrowed Anthony's sunglasses (Anthony is a really good aid in my area.) Herewith, the result. I am now in the market for a Groucho Marx type face that is covered with seeds. The sunglasses were just not brown enough.
It did improve my disposition, and a lot of friendly nurses stopped to comment. Things are just tense in my life right now. I'm not so good at dipping and swaying to miss the obstacles; I just want everything to go perfectly (perfectly being MY WAY.)
Dr. Aljitawi paid a visit. I love Dr. Aljitawi. He is a negotiator. I felt almost like I was in a lawsuit settlement conference.
Dr. A - I was not in the meetings about your transplant.
me - right...you were in Jordan on holiday
A - So I went over the notes
me - imagine a prompting nod
A - and I have an idea (he sounds very upbeat but obviously not quite sure about my reaction)
me - still nodding
A - You've had the Fludarabine before
....
A - but the Melphalan is new.
...
A - and I would like to see you more during the Melphalan
...
A - and perhaps have you in the hospital for it...
me - YES!
Actually I wasn't that enthusiastic because he had clearly prepared his case so carefully I hated to distract him. He was also carefully watching my mom's reactions as she listened in to the conversation.
So I will likely go in the hospital Fri or Sat and stay through the transplant and for a couple of days after that. I am okay with this. Yesterday, I lined up sitters to stay with me so that M&D can get away to the lake for the weekend. So I know I will have company at the hospital. the only thing that worries me is aerobic exercise. The bicycle on the BMT unit apparently suffered a fatal cardiac arrest (isn't that awful about 50 yr old Michael Jackson dying?) some weeks ago.
I play with my little air toy several times a day. I have to suck through a tube to raise a disk up to 2500 while at the same time, NOT letting the little yellow thing move out of the "best" section. I'll have to post a photo. This helps my lungs, but isn't really aerobic exercise.
Let's see the other news is that I will lose my hair and get mouth sores from this Melphalan stuff. I was contemplating getting a hair cut, but I reckon that won't be necessary now. I have also vowed to minimize the mouth sores as much as possible and have been rinsing frequently with salt water.
I just need to get my hospital clothes clean and the Wii packed up to go.
This evening Walt is keeping me company and filling in the gaps in my American history. I know a lot but barely enough to fit on Walt's little finger compared to what he knows. He started the Neupogen shots today. The person he met with said they will try to get 500 cc of cells from him. And they will put them all in me. That's another difference in this transplant.
Differences...
1. no radiation
2. 2x stronger Fludarabine
3. new chemo Melphalan
4. LOTS OF STEM CELLS (last transplant was 350 cc or so)
5. anti-rejection chemo afterwards.
6. shorter time span for immune suppressant drug.
7. longer recovery time....6 months instead of 100 days.
All to incite a fight between my cells and my brother's cells.
So "beat em up, beat em up, smash Ca-thi!"

5 comments:

gail said...

Wow - pole position. Rare day for me.

Cathi - the photo is a hoot. And the hat? Well, it certainly cheered you up and that's all that matters.

When are you being admitted to the H? Already? Friday? Over the weekend?

Do you need more Xword puzzle books? I just came into a huge stack of them from a recycling group I belong to. And, no, they haven't already been completed!

Sending you big hugs!

love, gail

ps - WV: FILYP. Fill ya' up! :)

Unknown said...

I remember Anthony - he's cute :) You look good in the photo, can't tell you're feeling grumpy.

So, bye bye clinic for a little while and over to the hospital. Sounds like you're okay with that - and if you're okay we're okay!

hope you keep the mouth ulcers at bay.

lots of love
#2 GOT
wv - memis

Walt said...

Cathi keep it up. Yesterday was a good day and a nice evening. A short stint in the hospital will be good to change the scenery.

They are also giving me more of Neupogen each day. Beth and I each had a go at sticking me in the belly with the shots. As Beth pushed the drug in, slowly, I kept thinking how she told be to be quick as that was less painful. Had I done something offensive? But a little caution is OK. The shots are quick.

We are set for 7:30 Monday morning to donate, now in 44B on the fourth floor.

No cathchy aronyms to close with. So put on your smile and enjoy.

Diane said...

Been out of touch. Playing catch up on the blog. Sarah, Joel, Anna, and Abby have moved to the house they are house sitting for the next month. The house is really empty after having them here for 6 weeks. My morning computer time was spent fixing breakfast for the little ones. I enjoyed it.
Loved the hat!!! I know you are up for this challenge!!!! Go girl!!

Love
Diane

BAMc said...

Great picture it looks like you are ready to vacation in Florida! Thanks for the play by play and approach differences.

Awesome job Walt! Go Walt-cells!

Cathi, keep using your great sense of humor! It’s a most excellent antidote and counterbalance to all you are doing. You are inspiring us all. Take the next bunt and keep advancing the runner!