It's hard to believe that I've been out of the hospital now for one year. My final day there was April 17, 2011. Time is one of the only things in life that can be both fast and slow simultaneously. Since my release all those many months ago, I've been diligent with my chemo treatments....no easy feat, to say the least. I marvel at my body's ability to hold up under the increasing strain. Dr. Polikoff told me recently that only 30% of adults with ALL actually finish chemotherapy because it is such a difficult journey with a high level of toxic side effects. But here I am 1 1/2 years inito the protocol, with only 6 more months to go. I'm committed to getting to the finish line of this incredible marathon I've been on.
I watched a documentary on the Discovery channel a few weeks ago on the Iditarod. For those of you who don't know about the Iditarod, it is a grueling dog sled race in Alaska over 1,000 miles long. Find out more about it here: http://iditarod.com/about/history/ As I watched it, I couldn't help draw similarities with my own personal Iditarod this past 1 1/2 years. Both are lonely journeys -- just you and the elements. Both call on the hero within and those special qualities no one can give you but yourself: perseverance, faith and grit. There is pain and hardship along the way. You learn to rely on those close to you for support and cheer (your dogs in the Iditarod and your friends/family in cancer). There is joy in crossing the finish line, no matter where you "place" in the race. Just knowing you didn't give up is a reward in itself..
It takes all of this, and more, to keep going with my treatment, especially as new side effects pop up. I can feel a deeper level of the chemotherapy now in my body, cummulatively. I can feel the effects it's having on my healthy tissues and organs. But it is for the greater good to continue, whatever the cost, as I know I have to give myself every chance to beat this disease FOR GOOD.
One of the side effects has been a curious form of tinnitus called Pulsatile Tinnitus. I hear my heartbeat in my left ear constantly. It is loud and clear, thumping away like the sound of a clock.... Well, not always, thank goodness! I must say, it gives new meaning to the phrase: "Listen to your heart."
My Atrial Fibrillation has, over the last several weeks, become more frequent. One advantage: I can tell immediately when it goes out of the sinus rhythm now because I can hear it! The Afib on top of the chemo treatment and low blood counts lays me flat out. I can't get the surgery to correct it until I finish chemo. Meanwhile, my fingers are crossed that it doesn't become chronic prior to that, as the surgery is less effective then. All of this is pretty dicey at times. I can't help but wonder how I got both of these at the same time....Leukemia would have been plenty, right? But there are no accidents in life. I'm convinced there is a deep and benevolent purpose to all of this in my life, even though I'm not completely sure yet what it is!
Peter offered up this insightful wisdom recently, "Heidi, maybe it came to slow you down!" I know what you're thinking -- those of you who know me well: "Duh!" Well, it's true. I've been one of those fortunate souls wired for action! Leukemia literally forced me to slow down. I admit, it's a HUGE "pattern interrupt." I'm not sure a brief foray into cancer territory would have been enough! (Not that any cancer is easy...) I had to get a 2 year chemo program with daily, weekly, monthly chemo!
On a positive note, I had an appointment today with a wonderful (and very accurate) medical intuitive named Laura Kamm www.energymedicine.org). I avail myself of her gifts at critical junctures in my treatment. The increasing side effects, along with Afib, brought me to that point recently. I especially wanted her to look at whether or not I have any MRD (minimal residual disease). I had mentioned what this is in an earlier entry:
More than 80 percent of adults with acute lymphoblastic leukemia (ALL) achieve complete remission (CR) and up to one-half may experience prolonged disease-free survival and be "cured" of their disease. However, many will experience a recurrence and die of leukemia. Relapse is thought to result from residual leukemic cells that remain following the achievement of "complete" remission, but are below the limits of detection using conventional morphologic assessment. These subclinical levels of residual leukemia are termed minimal residual disease (MRD) and can be evaluated using more sensitive assays.
Needless to say, it's extremely important to find out where I stand in this regard. The MRD test is not the standard of care at Kaiser and the cost of the test elsewhere starts at $45K, so is out of the question. The good news: Laura could not detect any evidence whatsoever of MRD in me. I would love it if Western medicine could also put their "stamp" on this statement, but for now, I am comforted and encouraged. Laura looks at things from 3 perspectives: potentials, possibilities and probabilities. She said I still have the "potential" for a recurrence so need to continue my work with nutrition, visualization and affirmation. I figure we all have the potential for both illness and health, so I'm redoubling my efforts to focus on the latter!
Needless to say, it's extremely important to find out where I stand in this regard. The MRD test is not the standard of care at Kaiser and the cost of the test elsewhere starts at $45K, so is out of the question. The good news: Laura could not detect any evidence whatsoever of MRD in me. I would love it if Western medicine could also put their "stamp" on this statement, but for now, I am comforted and encouraged. Laura looks at things from 3 perspectives: potentials, possibilities and probabilities. She said I still have the "potential" for a recurrence so need to continue my work with nutrition, visualization and affirmation. I figure we all have the potential for both illness and health, so I'm redoubling my efforts to focus on the latter!
On the creative front: I've been painting more and writing more. Here's my latest. I call her the Green Tara:
"Tara" dates back to the pre-Vedic period and was also adopted by Buddhism as an archetype of the perfected feminine essence. She is the Mother of Compassion, Mercy, and Forgiveness.
Here are a few pictures from my recent trips into healing nature with Peter on the weekends....
Sedona, AZ January, 2012
Joshua Tree National Park -- a birthday weekend (above and below)
Thanks for listening.... I think about you all so often and appreciate your love and prayers, more than you can know. Stay tuned in the upcoming months for more from this heart to yours....
Heidi
