Sunday, August 7, 2011
where Light blooms
I shall Recap: After several years of vague quirky health symptoms and slowly sinking blood counts, roughly between 2003-2007, I was diagnosed with MDS (myelodysplastic syndrome) in November 2007 following my 1st bone marrow biopsy. Almost a year later I landed in the leukemia ward in the Alta Bates Hospital system here in California with an AML diagnosis: Acute Myeloid Leukemia. Nasty-assed one that is. Two harrowing rounds of IV-chemo in 25-day stints, $500K billed to insurance, and salivating oncologists eager to line me up for more more more. At that time, following an uneasy feeling inside of me, I stepped away from conventional cytotoxic cancer care (sic). The blast count had been shot down. I was "in remission". I took that, my faith in Christ Jesus and His Will for my life and a growing commitment to alternative healing protocols for the following 2-1/2 years. I decided against a bone marrow transplant. I wanted quality of life, not a scary tango with graft-versus-host-disease. I wanted GOD's cure, not Big Pharma's cure.
I had for the most part a fantastic 2 years. Yes, the counts slagged along the ground, but as far as I could tell, I was challenged by the chronic MDS and not a relapse of the AML. Carrot juices, green power smoothies, beaucoup dollars worth of custom-chosen supplements each day, week and month, eating with relative purity, praying my heart out, exercising.... living. Living! The beginning of 2011 introduced more see-sawing in my healing path.... some things were not tracking properly. I was beginning to struggle more.
After leaving for a healing road trip in early June, feeling fantastic after 8 days with the Mt. Rainier Clinic up in Gig Harbor, WA, I ambled my way back to California via the Mt. Angel Abbey in Oregon's Willamette Valley.
On June 20th, I lost the ability to take a proper breath.
It has been Mr. Toad's Wild Ride ever since then... and the adventure continues.
I will cut to the chase. Today I have not one but two cancers: A return of the AML in my marrow, and a new T-cell lymphoma (a rare Non-Hodgkins). There is a tumor behind my breastbone that is malignant and has turned my abilities to breathe inside out. The suddenness with which this came on still baffles me. As I have written, I had spent a shrinking 5-6 weeks with piss-poor pseudo-medical care scattered throughout the local environs until Sunday, July 24th when I landed on the floor of my living room crying out to God and phoning dear friends from my Sunday night Home Church group. I got them out of bed at 6:30am. The local Novato Community Hospital took me in, ruffled my feathers and then said, "You are not dying on our clock. What you have is serious. No one in Marin County can help you. We're transporting you to UCSF Medical Center NOW."
I believe that this intervention and God's Holy Grace have saved my life.
I was in an ICU bed with wires attached to both sides of me. I could not rise without nursing assistance. Teams of physicians trooped the halls... the ICU team, the Cardiology team, the oncology team with their ever-present black clouds around them. Each focused on the varying parts of me, with the cancer chasers at the core. When the oncology team shuffled into my ICU room and splurted out my dire straights, they said, "We can begin chemo tonight. We can put you back into Induction Chemotherapy for the AML, which will not cure you but buy you some time. We can treat the lymphoma differently and concurrently. What is your choice? It's this or hospice."
I stared at the doom bringers. "Lord....?" I thought and prayed.
"I'll tell you tomorrow," I replied very softly. "I'm not making that manner of decision just like THIS!"
And I already knew.
NO. I do not want your "treatment". I will go home to palliative home hospice care when I am able enough to leave the hospital. I will not attempt to buy time from you. God has my life in His hands. He will bring me Home to Him when He chooses. Not you.
And that is where I am today.
I'm not quoting numbers. I have 3-4" of papers and charts and labs. I've not looked through them. I am not concerned with that. I am operating on one lung, which I am told is done ably by many. The right loculated pokey is simply non-functional at this point. I have had fluid removed from around my heart (!) - a "pericardial effusion" manifested that was operated on - and also from around the lung area. At one point in the hospital I had three drainage tubes hooked up to me, one heart and two lung. I have NONE today. At one point in the hospital, after weeks at home on 24/7 oxygen (5-6 liters/minute), I was on 20 liters/minute. Weaned down to 2, I haven't had supplemental oxygen in well over a week PRAISE be to GOD! I walk slowly. And I walk. I take oral steroids every morning, a protocol I felt a 70% willingness to do. They're supposed to help shrink the tumors plural (alas). There are side effects. After over 2 months of sleep deprivation, I am learning how to sleep again. In peace. When I awaken in the night, I pray and sometimes simply give praise and thanks to God.
I am surrounded by love and support of friends. My first few days back in my own home became a whirlwind of utter JOY! Meals out, laughter, fellowship, breaking bread with my beloveds in Christ Jesus. Spontaneity. Yes!
There is much I wish to uncover, share and explore in this space from my heart. Taking in your love, your thoughts, your candles, your prayers. Opinions will fly. That is life. I am not sitting in my prosaic rural Novato home waitin' da die. I'm not flinging an ego-sword of outrage, proclaiming, "I'll show YOU!" I don't have a road map. I have the Lord God Whom I love and Who has never abandoned me for a half-breath. I am curious. I am sometimes afraid.
I am surrounded by the Love of God and of the brethren. I pray and drink tea. And I can't wait for my next blog post.... for an exciting gift that is "planned" (ah, the catch-word!) for early September. DELIGHT. Tee hee! Wait and see.... breathe and laugh!
I am alive today. I will be alive after my earthly body says farewell. I will be as present with you all, my friends, as I am able.