Wednesday, January 16, 2008

Happy '08 -- all #s all the time

It's all about the numbers. Or it seems that way.

The new year started off quiet and I was recovering from what turned out to be 'pneumonia.' After 10 days off the chemo, I was deemed strong enough to restart the meds. My numbers were up. By the tone in the doc's voice I gathered that was a good thing. Turns out my RBC and WBC were both back to normal numbers. So, my blood was now ready to be bombarded with the chemo once again. I was well enough to be made sick so that I could be 'better.' It's so confusing. This disease, CML, doesn't have a cure other than the bone marrow transplant (BMT). So, all the meds are to keep me alive not cure me. Feeling bad is the result of the medicine not the disease at this stage. Did I mention it's confusing?

This 'chemo' time around I am really working hard to consume LOTS of raw dark green vegetables, take my vitamins, exercise, rest, drink the special teas, take accupuncture, go to the chiropractor, etc. Of course doing all that seems like another full time job! I can't keep up with the job I have, but I'm trying to get caught up.

For the first week I had lots more energy, no headache like before, and I was able to go to work every day and a Saturday too! Then, the fever and severe bone pain was back. I missed going into the office today. I am so bummed. Acutally I am super pissed off.

Each day at lunch I juiced carrots, celery, cucumber and apple. I ate an entire bunch of kale too! It was good, or should I say I got used to it. Nevertheless, I wanted it to work and keep me back on a 'normal' schedule rather than at home trying to decide which painkiller to use. As each day passes I feel like I'm losing time, hours, minutes, missing deadlines, lost opportunities.

Please don't get me wrong, I am so very thankful for everyones emails, comments, phone calls, donations, etc. Lili and I are continually amazed and thankful for everyone's generosity.

I'm just angry at the loss of time. CML is faceless -- without an xray to show the problem. It's just numbers on reports (an ENTIRE binder full in fact). Some of the DNA testing is in nothing less than Aramaic or cave drawings, and I have given up on even trying to decipher them now. I'll just ask the docs "Are we there yet?"

In the meantime (and I do mean "MEANtime") I will continue to eat raw greens, and all things veggie. Perhaps I will need to come to grips with the new CML 'numbers game' and make peace with it. I don't like playing this numbers game, but I suppose we are all subject to a life of counting days. Going forward I will just have to make the days count.

1 comment:

Annie - Steven's mom said...

Hi Rhonda

I have been meaning to leave a comment for a while - time kinda runs faster than I do most times these days.

I love your way of writing - you bring things to life.

I don't have cml - my 24 year old son does. He is doing well on 400mg Gleevec. Thankfully.

Today I babysat my 10 month old grandchild which forced me to 'waste time' while she slept on my chest. I could not do anything which was very frustrating as I normally multi multi-task all day long. Well, after a minute or two of being 'pinned down', I let go and simply enjoyed the moment - well, hour! And wasted time turned into wonderful time :-)

Maybe time is not being lost - maybe we just don't enjoy the down-time as much as we should.

Again - I really enjoy your writing - thanks so much for sharing.
love and light
Steven's mom