Thursday, January 31, 2008

Tests, Grades, and Milestones…

Two months on chemo. It's a milestone, only problem is I'm still not sure of where this road leads. On Wednesday I took another PCR test that tracks the CML at the DNA level. The clinical trial folks want to know if the free meds I’m getting are making an impact.

On a road trip I am one of those people who set the trip odometer, count the miles to my destination and make estimates for reaching certain goals/towns by a certain time. Don't think for a moment that this means I am an on time person (as most everyone reading this knows already).

Nevertheless I am a constant counter. Lili and I play 'overs and unders.' I pick a time I think we will arrive and she can take ‘over’ or ‘under.’ Rules say I must obey speed limits (a new rule) and not sway the results. We like checking the mile markers and updating our estimates (bets). It’s not a race, but we seem to find comfort and fun in knowing where we are in the journey at any given moment.

Grades are an evaluation of how much a student mastering all the coursework. Tests indicate the progress of mastery, or do they? I ‘mastered’ several subjects in college, but I’d be hard pressed to pass any of those tests now. Perhaps I was smarter in the 1980’s. Some classes I really loved and thus devoured the books, but even so my grades most often didn’t reflect my mastery of the subject. At the time I would respond by saying I didn’t master the opinions the professor wanted, but I knew the info. My bravado was surely a survival instinct under the heat of competition from very well educated classmates.

In the case of cancer, even with tons of test results I am not sure where I am at any given moment. And how do I measure myself and success vs. cancer? How can I calculate my scores versus the competition? Success of course would be a total disappearance of the disease. To be 100% cancer free. Only problem is, medical science says that’s not really possible. For a competitive gal, that translates to “the best you can expect is a C”. A prognosis of 6 years is supposed to sound good. It really doesn’t.

Several friends and family are reaching age milestones this year. I am thrilled for them since age milestones mean they reached a coveted goal – another year of life. But like my college grades, I realized that the passing of time may not be an indication of mastery, or a life well lived. Birthdays don’t count the memories, the laughter and silliness of living. Nor do they count the sleepless nights of lonely or tears of worry.

Even among cancer blogs, I started to mentally note the number of visitors to their sites (vs. mine of course). And, I began comparing the volume of comments on their entries to the number of comments on mine. I’m starting to think measurement and comparison is a form of perverse addiction akin to GPA’s, big houses, trophy spouses, and well… body part size comparisons. (I think you know what I’m talking about…)

In a moment, I was transformed from Rhonda, to Rhonda with cancer. It’s as if the odometer is spinning and flashing, and all the road signs are in some technical language I don’t understand. My ‘life’ maps all seem out of date. Everything has changed, but not in one of the many ways I had hoped. Now is the season of rewriting, recycling, or getting rid of my ‘life goals’ and just being.

I promise to keep everyone posted on the test results and new goals. How about ya’ll keep me posted on the measurements of your life? The comment section awaits…

PS. In case you are counting, this entry is 644 words.

Wednesday, January 23, 2008

Kale, Kale, and more Kale

The MDA doctor visit last week went fine. My high school English teacher said "fine" was a four letter word that meant nothing. Perhaps it fits in this circumstance. The visit was uneventful but I suppose that's a good thing.

My accupuncture visit was great. She focused more and more on the kidney and liver functioning. The chemo takes it's toll on the body in so many ways and the kidneys and liver take the brunt of the blow.

The blood draws and exam last Friday went well. The physician assistant said the blood levels looked good. My view is that they are great by comparison to the first round of chemo. At 10 days into treatment last time I lost 5 points of my hemoglobin count--going from high normal to low (9). This time I lost .5 which sounds great, as I am just below normal with a count of 11.

I suggested to the physician's assistant that it could be because of the vitamins I'm taking, juicing, and that I eat an entire bunch of kale EVERY day. Her reply was, "well I know the kale farmers are happy about it." Ugh. She hinted that this is just what happens with the medicine and the body adjusts to the meds eventually. She said it probably would have happened with or without the kale. Really? I'll leave you to guess my response. Ok, I didn't say it, but yes, I thought it.

Nevertheless, my kidneys and liver still need help, but they are doing ok. Not eating meat and only one meal with cooked food per day is helping but it may not be enough. As I become more adjusted to the raw food and juicing I suspect it will be easier to do it more. When I'm out with friends, or tired, I find that I am most tempted to eat crappy stuff. Working on getting more 'to go snacks' just in case there isn't much on the menu, and to keep me from eating fries!

Doing more research and found out that CML has been linked to exposure to chlorine in the water and mercury fillings in my teeth. Great news aye? So, with benzene, chlorine, flouride, and mercury in my system every day as a child... it's no wonder my DNA 'flipped out.'

I am confident that we will find a way to reverse this disease. I know that the medical world is wroking hard to find drugs to help. Their efforts have made an enormous difference in the world of CML. In addition, I plan on doing lots more research, removing my fillings, and getting a house water filter. No pain, no gain right?

Most of the doctors I've met, even at MDAnderson, don't seem to take a comprehensive view of health. I had an infection around both eyes last week ( looked like alligator skin and puffy too... very attractive I must say). The dermatologist and the leukemia folks didn't agree on treatment. It took a while to find middle ground, but it wasn't because they were talking to one another. It was because I suggested a compromise and then waited to check it out with both sets of doctors.

I was also scheduled to see the social worker for the bone marrow transplant (which I don't really want to consider but I'm keeping an open mind). The social worker needs to confirm that I can mentally handle being 'out of commission for more than 100 days, and that I have caregivers lined up to be with me 24/7 for that entire time. I responded sure to both questions. That was a huge leap of faith as I haven't been out of commission for two days without getting a bit stir crazy. No doubt I will need to do some serious prayer time to ready myself for being still(ish) for more than 100 days. I could exercise and go out, but with a mask and gloves, etc. Sounds like fun. I don't even want to tell you about the graft vs. host disease details.

Again, I just hope that kale, kale, and more kale.... keeps me full of strong red blood cells to maintain energy. And with that energy I can find a way to circumvent the bone marrow transplant. Speaking of energy, I am limiting myself to only 6 hours in the office per day, and getting plenty of rest. Hard to manage all the responsibilities and a social life, but oh well. I don't want pneumonia again that's for sure!

So, please eat your kale, drink your fresh juices, take your vitamins, and exercise. And most important...don't forget to love, love, love! There's no such thing as getting, or giving, too much love.

Happy "I love you Wednesday" !

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.