Tuesday, April 14, 2009

The waiting game

Yesterday I spent nine hours in the clinic; I think that might be a personal record. I got there at 11 a.m. for bloodwork and didn't leave until 8 p.m., due to time spent waiting for a chair in the infusion room and then more time waiting for preparation of my two bags of blood and delivery of my two bags of platelets.

I bring a lot of things to read, but I also spend a lot of time spacing out and picking up bits and pieces of peoples' stories shared in the crowded waiting room. Yesterday I sat next to a cheerful middle-aged woman with braided blond hair who was telling the people next to her that she was just meeting with her doctor instead of starting chemo, which she had put off by a day because she was so scared. Later I sat in the infusion room next to a man who had a reaction while getting chemo. The nurse had to stop the chemo for a while, and he kept asking when they were going to start it again while his wife and daughter tried to calm him down with Swedish fish.

Finally his rash cleared up and they started the chemo again. "Is it almost done? How much more time do you think? I'm going to call the nurse," he said repeatedly and loudly. His wife hissed at him. "Don't call the nurse. She'll know when to come." The nurse did indeed come, and he was actually done before I was. Somehow I managed to fall asleep during all of this.

On a positive note, Dr. Alyea was pleased that I held on to 12 platelets again and said that we'll see how I do this week and then maybe I can go to twice a week instead of three times. I haven't needed blood as frequently as platelets, although I knew I needed it yesterday because I was light-headed and weak. (My hematocrit was 25...not terrible, but low enough to feel it.) After a day like that, I usually am pretty beat the next day; today I slept late and then fell asleep for a couple of hours on the couch after forcing down some cereal.

I hope that cutting my visits by one day will help me start getting a little more distance. As it is now, I have to deal with "check-up anxiety" every other night. But I know that time is the only thing that will give me real distance.

12 comments:

Susan C said...

Your marathons have gone from the streets to the clinic. That was one long day!

Continuing to think good thoughts for you daily.

susiegb said...

Good to hear about 'progress' on the platelet count! Even though I had a pretty busy Easter, I kept checking for updates from you ... :)

Ann said...

So happy to hear that you're hanging on to those pesky platelets. Before you know it, those visits will be further and further apart. And you're right, it's only a matter of time.

PJ said...

That's one long day at the clinic! I hope today's visit is considerably shorter. You know that song "Hang on Snoopy?" Your version: Hang on platelets, platelets hang on. do do do do do do, etc.

donna said...

Ronni, you are so amazing. Hang in there, friend. You're on the right track!

Meryl Fingrutd said...

Ronni:

From a distance, and via your blog, I only see progress and things getting better. It's probably impossible for you to have a more distanced look- you have to attend to the minute by minute stuff of everyday life. But there's more and more hope each day. Feel it! Sending you lots and lots of love and missing you. Meryl

congoresearch said...

Yes, Ronni, time and distance!

After all, you are the all-time greatest distance!-runner-winner...xop

pam said...

Ronni, i do not know how i ended up as Congoresearch! strange, because i spent a lot of time in the Congo last Summer and Autumn, at the Archives, not physically there...!
the above is obviously me...sorry!

Nelle said...

I remember 12 hour clinic days with my son. That was after I had to insist he go for blood. He hated getting it so. He actually insisted they cover the blood with a sheet. When I had my heart surgery and got transfused he actually covered my blood with a sheet. I always loved getting them because I felt so much better afterwards. YOu are in my daily thoughts and prayers and I rejoice everytime your doctor gives you any good news. You are on your way on the road back. Sorry about the check up anxiety. I have that myself even after many years.
Take good care,
Nelle

mikehamel said...

Hang in there Ronni. Your last line is so true.

I'm writing you from Memorial Hospital in Colorado Springs, where I, too, am buying time.

Ishmael said...

i saw you comment on Patricia's blog concerning Sunday's and Monday's Marrowthon to save little eve.

here is more information:
http://www.giftoflife.org/Public/News.aspx?news_id=91

thanks,
ishmael

ליאור said...

Hey,
My name is Lior Wildikan. 20 years old from Israel.
One of my best friend is recovering from a bone marrow transplant these days. I wish to create for her a uniqe mosaic that is made up from many pictures of other bone marrow transplant survivors with their donors, each picture with a couple.
I wanted to know if maybe you can help me to create this present by sending me some pictures of the kind I'm looking for. If you cannot can you please send me names of survivors and I will contact them to ask personally if I can use their picture.
My e-mail is: wildior@gmail.com
Thank you for sharring your story,
Lior.