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Mar 21, 2017 Latest post:
Oct 6, 2017
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
The year 2016, my transition from young adult to mature adult, will go into my personal history book as the greatest and most challenging of my life. Living my 60th year, I serendipitously found, early in the year, the woman of my dreams and the love of my life. Meeting Virginia catapulted me into a new found level of happiness, joy, adventure and spiritual and emotional growth not like anything I had experienced before. So powerful was the inspiration and clarity that she brought to my life that I brought her to Paris and proposed on September 18. The joining of our paths in this river we call life was an enchanted hiatus in my life that created the foundation filled with love and resilience that I would need to resort later in the year.
A month to the day, after my 60th birth, I started feeling sick of what I thought was a bad sinus allergy, or maybe a weird flu-like syndrome. The whole month of November witnessed me getting worse. From some sinus headache and increase tearing, to worsening fatigue and gum swelling, to weight loss and night sweats. Treated as a sinus infection without success, I finally made the decision before Thanksgiving, that if I did not see a substantial improvement by that weekend, I will go to the Emergency room and get the studies I needed to sort this out instead of the back and forth of ambulatory visits. On Sunday November 27, 2016, 54 days of my 61st year on this earth and 27 weeks after finding Virginia, witnessed the beginning of a radical change in my life. After a doctor to doctor discussion of what tests to get, standard blood, sinus CT and abdominal US, to see what we find; a screw ball from the least expected test put me in baseball terms at max count. The CBC showed a White Blood Count of 116,000, with a Hemoglobin of 9.3 and platelets at 65,000. It was enough to presume the diagnosis of Acute Myelogenous Leukemia. WTF….?? From then on it was just a daze from which I will come out six weeks later. The physician in me knew what was a stake, the patient in me was in total shock and denial. I could not handle the dichotomy. I called my oldest son Gabriel, the physician, to help bring some objectivity and parsimony to the process, while providing the essential son/caring physician support. On the other hand, what should I tell Virginia? I have been temporizing and delaying disclosing to her the hard facts for obvious reasons. Giving her the Leukemia news with all the emotional rollercoaster that it will bring into her life was a very difficult decision to make. Will the news turn her away? I did not want to cause more heartache but these were the cards we were dealt. After a few phone calls and delaying the inevitable, I told her late that day the findings and she headed up to meet me at UCI Medical center Oncology floor late in the evening. Together we heard the rambling of the Oncology fellow of the initial findings, the preliminary assessment and the plan. The two potential diagnostic options were: Acute Promyelocytic Leukemia - APL (the worst kind) vs Acute Myelogenous Leukemia - AML Monocytic type (the better kind). The bone marrow biopsy the day after, settled the score. The better kind it was. Because of the complex cytogenetics: FLT3 positive, NMP1 Positive and normal Karyotype, the treatment plan was intensive. The treatment plan was: Induction Chemotherapy 7+3 with Cytarabine and Idarubicin - 7 days of chemo with 21+ days of in-patient monitoring PLUS 4 monthly cycles of Consolidation Chemotherapy - 1 week in-patient for High dose Cytarabine on days 1, 3 and 5 and outpatient follow up three times a week while waiting for a Bone marrow transplant. In full transparency, I finally got the overall plan during the 1st consolidation treatment mid-January 2017, when I woke up from the daze ready to tackle the challenge.
The month of December was the darkest month of my life. Without Virginia, Gabriel, Jess, Danny, Mika, Irene and Felipe's hands-on, loving and unconditional support, and the fact that Kenny was well cared for, and with all the friends and family that prayed for me and visited, I would not have survived the Induction phase. The great news was that the follow up Bone Marrow biopsies on Day 10 and Day 28 post-chemotherapy showed no residual disease. I was in the sought out complete remission 1 (CR1). In oncology terms, the best of all possible outcomes! With phase 1 successfully on the bag, I went home 36 lbs lighter on January 4, 2017 - 38 days after admission. Insecure about how to care for myself, physically worn-out and emotionally exhausted, I spent two days at home and went back with shortness of breath. I was admitted for 3 days to rule out a pulmonary embolism. Thank goodness it was nothing! Was it maybe anxiety and the feeling of not being capable to care for myself without the cadre of competent nursing staff and full family hand-holding and support? Sunday January 8, I went home determined to change and regain control. Monday January 9 was my first outpatient Oncology visit. Exhausted, I went to see Dr. Jeyakumar, at UCI Medical Center, to receive the news that the 1st consolidation needed to start the following week, Monday January 16. Really?? Would I be living in a hospital moving forward? That week of pre-consolidation, I started the arduous process of regaining back control of my life in the new normal. Reading as much as I could about healing from cancer, meditating and praying daily, doing mindfulness visualization exercises daily, frequent use of positive affirmations, making an effort to exercise despite the severe fatigue and muscle deconditioning, eating as much as I could to regain the lost weight (I'm glad the my appetite was back in full swing!), and doing emotional work with a therapist, I slowly came out of the slump.
The first consolidation, was not bad at all. With the new Felix in the driver seat, I was "enjoying" the stay and continued the ascension from the hole I placed myself into. The outpatient follow ups, and the blood and platelet transfusions became part of my new routine three times a week after my discharge for two weeks. My numbers bounced back by week three which gave me a week off the regular visits before the next consolidation. Kenny and Virginia time!
The second consolidation on February 13 went as smooth as the first one. I was finally able to sustain a positive outlook to my new normal, I could now tackle the difficult task to read and learn about AML and what my options were. I scheduled the first appointment for Bone Marrow Transplant (BMT) evaluation at City of Hope for February 21st, two days after discharge from this consolidation. Not very fond of having a BMT I looked for all the possible options, Autotransplant - Blasts from myself vs Allotransplant - Blasts from a sibling or unrelated donor vs Chemotherapy. The literature was confusing but clear, the best survival option was Allotransplant with all its implications and life altering consequences. So, I prepared as best as I could for that first appointment.
February 21st came and our first visit to City of Hope in Duarte became a reality. With Virginia, Irene and Felipe on my side, we went ready to discuss and learn about BMT and its implications. Dr. Al-Malki spent a lot of time with us and answered all of our questions, and Irene and I got our HLA typing to see if we were a match. Finally, at my next visit on March 3rd, I got the great news that Irene was a match… and the race was on!! There were lots of blood tests for both of us, and multiple other diagnostic tests to clear me for the procedure. Finally, we were cleared and I am ready for transplant! Scheduled for Admission of March 28, the plan is a four day of chemotherapy "conditioning" - what an euphemistic term for the nuclear options of ablating my bone marrow to give room for Irene's blast transfusion. While this is happening in my room, Irene is getting ready by injecting Neupogen x 4 days to increase the amount of blasts in her blood and to donate those precious, life-giving blasts the day before day Zero, if there are not enough she will go through another apheresis procedure to get more blasts that can be transfused to me on day Zero in the evening.
What follows is the history of this life-altering, rebirth. With God's help and all of your support, I will come out at the top of my Mt. Everest unscathed and ready to come down and start a brand new life full of joy, passion, and enthusiasm with a renewed effort to help others circumvent challenges like this.
"When the sun is shining I can do anything; no mountain is too high, no trouble too difficult to overcome." Wilma Rudolph