Monday, January 26, 2009

Holding pattern is over

I got my first dose of fludarabine, the pre-transplant chemotherapy, on Saturday. I’ll continue getting it once a day until Thursday, when I’ll get a double dose of melphalan, a chemotherapy agent aimed at mopping up what I like to keep reminding myself is a small amount of leukemia. I get my new cells on Friday. Thank you donor, wherever you are.

Dr. Alyea said to expect mouth sores a few days after the melphalan and also a possible thinning of my hair. I still have some fevers (and accompanying shakes) but mostly I feel OK.

It was strange to make the transition from holding pattern to actually taking action. I’ve been here so long (since Dec. 21) that towards the end of the hanging out phase that ended Saturday, I could sometimes distance myself from why I am really here. Once the chemo started, I came face to face again with the worry over whether it will work. The flip side, of course, is thinking that the start of chemo brings me closer to the day when I get the new cells and get better. I’m working on it.

There is no more Zen in my walks. Starting Saturday, I officially became a BMT (bone marrow transplant), with all the restrictions that entails. No more going out the double doors to rapidly walk 30 laps (a mile and a half) around the sixth floor. Whether counting the laps or trying to get in touch with healing energy (sorry if that sounds too new-agey) or just quieting my mind through breathing, I felt that the walks calmed me down. I know, I’m breathing all the time (thankfully) and can still connect with my breath, but it helps to keep moving.

Now (still wearing gloves and a heavy mask), I walk up and down the pod. I couldn’t even begin to count laps per mile, because it’s the shortest pod I’ve been on. Also it’s an obstacle course, with chairs, equipment, janitors’ carts and other hazards making it hard to find a clear path. It always seems to be busy out there, with doctors, nurses and aides going in and out of rooms or congregating to discuss a patient. Still I managed to walk twice today for about 25 minutes each time and even managed to find an area of about six steps to get a little speed up. And it’s all about getting around the obstacles, isn’t it.

Knowing that the dietary restrictions would set in again soon, I had so many big salads last week that a nurse asked me if that was all I ate.

I had company all weekend, which was great. I felt bad when I nodded off during conversation after they came all this way, but I'm sure they understood. Nancy drove from Syracuse; Emily flew from Pittsburgh, and Serena took the train from New York. (Pause here to get stuck twice for blood cultures. Ouch. Poor arms.) Diane also popped in, and Jim brought Katie today after school. Correction: Katie drove Jim. Yikes.

Last night I had an interesting dream. I was in a house where a big bear was rummaging around inside. I tried to run outside but I wasn’t fast enough, because the bear was drawing near. So I plastered myself against a wall and stayed very still. Next thing I knew, the bear had left the house and I was safe.

Oh by the way, for anyone following the MRI story, I got the results back and my brain seems to be OK!

15 comments:

susiegb said...

Oh Ronni - I'm glad the holding pattern is over, even if it brings with it less zen-filled walks and an opportunity for monster mind to bring up all the 'whatifs' again. Because as you said, the reality is that it's bringing you closer to the day (next Friday - whoo-hoo!) when you'll get your new cells and new healthy life.

And I'm sure there's some zen somewhere in having to navigate through and around obstacles on one's path in life!

Hope you manage to keep blogging as I'm going to be following your award-winning words intently over the next few weeks :)

donna said...

I think your dream about the bear is definitely a good omen. The bad things have left the building and the dwelling is safe. That is going to be you after Friday! Glad you had a lot of visitors. Can't wait to see you again. Hang in there, friend. Bonne Chance! Love You!

PJ said...

It's good to hear that everything's moving forward. I hope you can avoid the mouth sores. Do all the ritual rinsing/swishing they advise. It helped me a lot.

I'll be in touch next week (Wed., Feb. 4) and will drop by if you're up for it. Stay strong and determined, my friend.

Susan C said...

I love progress. I can't believe you've been in your luxury hotel since Dec. 21.

Becca said...

good luck with this next step

Mikha'el said...

All the best and many good thoughts are going your way

Howard said...

You'll stay one step ahead of the bear, and outsmart/outlast him for one last time.

Please keep us posted.

pam said...

Dearest Ronni,

just to let everyone know, you have attained a worldwide readership: votes were in not only from East/West, Mid/North/South, but also from Canada, England, France, Russia and Switzerland.

Margaret, thanks for gal-vanizing all for our Gal...Kudos, Ronni...

pam again said...

Dearest Ronni again,

as we said last night, the Bear is a Fine omen of triumph and healing...Ursa not Minor but Major --you have me blogging! never thought i'd do it...
xop

CLL SPOUSE said...

That's great news about the MRI! Press on and sweet dreams!

Michelle B said...

Hi Ronni - I am so glad there is progress and wish you had the longer walks you want. Saw Katie today in school, glad you got a chance to visit. I will send you the DVD of Newsies as soon as it is available. If I can do anything else at this end... would love to. Stay positive and keep writing, your words are powerful and helpful for so many people. Michelle

Wendy S. Harpham, MD said...

Your blog subtitle says it all: one step at a time.

Walking cyberly beside you, with hope, Wendy

Nelle said...

Ronni,
You are still moving towards your goal. I am amazed at the energy you still have. Isn't it wonderful that you have so many caring friends that are coming to support you? Many of my friends backed off when I was sick and that was hard to deal with. Glad you have friends in the real and cyber world who are all pulling for you. Last night I dreamt I was flying. It was wonderful.

hockeychic said...

Glad to hear that you are moving forward. I like the phrase "It's all about getting around the obstacles." Best wishes for the next phase of your treatment. I like the dream and feel is is a very good omen.

Anonymous said...

Of course the brain is okay- it is more than okay.

I know you have a fight ahead of you but one that I know you will deal with gracefully and wholly.

Know that there are healing thoughts from the west coast sending you loads of sunshine your way,
xo-Lea