Heidi's Blog: May 2014

May, 15, 2014

Howdy Folks!

”There is a light that shines beyond all things on earth, beyond the highest, the very highest heavens. This is the light that shines in your heart.” Chandogya Upanishad

"Faith" keeps echoing in my mind these days -- the belief (experience) of/in things unseen. There is a Generosity and Goodness at the core of this Universe so unfathomably vast and great, yet often imperceptible. Sometimes sorrow turns us to this Light. I had my own taste of sorrow recently that was completely unexpected totally unrelated to Leukemia. It burrowed inside, made tunnels through every corner. Sometimes it would lie still until a thought would start it, like a match starts a fire in dry brush. Poof! and I was off down the rabbit hole. Yet this and all the events in life, are deceptively perfect in their timing and intent. These last few months have been difficult in many ways, which is part of the reason I didn't update my blog until now. It took me awhile to find the words that would express my heart authentically, without burdening you all with yet another chapter in my human storyline. I have come to a deeper understanding that this "Light" referred to in the above quote can only be known through experience and not reading, listening to talks, or discussing with good friends however edifying or inspiring they may be. But thank God they are there. A sentence or two in the morning or at night before falling asleep has made a huge difference at times.

I truly believe this experience coming at this time, along with being at a very special point in my Leukemia treatment is about the Love at the core of my being, and the little seed of faith that assures me all will be well. Leukemia has come as a relentless teacher to open doors and windows within. As my close friends sometimes say to me, "You are a hard nut to crack, Heidi," and I humbly acknowledge they are right! I have been blessed beyond measure through the last several years, yet sometimes a little crack of doubt will open... "I've received many blessings, but will they continue?" Time and time again I've witnessed an overwhelming, inexplicable Grace enter and rearrange the jumble of circumstances in which I find myself. It appears nothing short of miraculous! Yet a few days later I might begin to question. It's a wonderful practice to bring in more awareness of these thought patterns.

I was reading this morning how faith is one of the greatest lessons we come here on earth to learn -- faith that we are loved, despite any contrary experience, faith that we have "enough" to sustain us through life, faith that there is a Benevolence at the heart of Creation looking out for every detail of our lives.. We cry out for help in the foggy darkness that surrounds us. Our little ship of life hits the rocks we cannot see. Turn left? Right? Keep going straight? There is no one to steer our ship except an Unseen Force we trust is taking us where we need to go, must go, actually, in order to continue our journey of Becoming. l don't always experience that shining light within the heart or trust that the light will guide and has been guiding my every step these last few years. But the more I witness these amazing twists and turns taking place, more often in hindsight, I see that only a Loving Divine Hand could have brought me to where I am today. Too many so called “coincidences” have shaped the past 4 years, events that at the time seemed to be turning me in the opposite direction from where I needed/wanted to go. But they didn't. Though they didn't seem so at the time, they have brought me closer to a cure.

"It's been a long and winding road" getting to eligibility for the transplant. It looks like I'm finally here, though I still have to redo those 13 medical tests I cleared last January. I'm in Parsons Village at City of Hope again (3rd month in a row). This lovely place is where they let people undergoing treatment stay who don't need to be hospitalized. The various medical buildings I go to are right across the street. Two weeks down as of today, and two more to go. Then I'm finished with the clinical trial, go back to Oceanside until June 16 when I enter the actual hospital the preparation for the Bone Marrow Transplant (another round of chemo, hair loss, etc. before the actual transplant on June 26. I'm excited and anxious at the same time. It is a huge procedure with big potential risks and a mortality rate of between 10-20%. I'm going into it with the deep conviction that this is my next step and that it is a blessing to find myself here. As Dr. Sahebi said to me, "Don't you want to get Leukemia behind you and live a normal life?" A million times YES! So, for me, it is worth the risk.

I found out last week that I am MRD negative. MRD positive patients are much more likely to relapse. I have wanted to find this information out since my diagnosis in 2010, but Kaiser doesn't test for MRD. To go to another medical center that does (and very few do) would cost a fortune. I believe it was the blinatumomab that got me MRD negative. You can look up the definition if you're inclined; it is quite technical. Suffice it to say it was very good news for me and yet again a cause for celebration and gratitude!

Also, due to the last three months of treatment, I've been able to hold to my remission status in both the bone marrow and spinal fluid. Was reading this morning that just 30 years ago -- early 1980's and before -- people with Leukemia were thought to be incurable and usually died within a few weeks or months at the most. I'm lucky indeed!

I wanted to invite any of you interested to an Art Show/Fund Raiser I'm doing on Saturday evening, May 31st, at the Seaside Church in Encinitas. There will be some fun music there that night and a wonderful "send off" for me for the transplant just a few weeks later. There were 3 months of unexpected expenses incurred because of the clinical trial, so need to get back on the fund raising "train" again for the upcoming bone marrow transplant...