It’s been 46 days since my bone marrow transplant at Stanford Hospital, a procedure that has saved my life. As I’ve reflected further on my journey to heal from acute myeloid leukemia over the past seven months, it’s become clear to me that there have been many key people and specific situations that have contributed toward making it possible for me to continue living this wonderful life.
There’s an old superstition that cats have nine lives, because they appear to possess exceptional survival skills to escape tough situations. I may not have nine lives like a cat, but in the journey I’ve been on since October 2013, I believe there were nine situations where there was someone who made a crucial decision that was critical to my survival. In this blog, I recount these “life or death” turning points as a way to thank those who cared for me, and also with the hope that others in a similar situation may learn from my experiences. Here’s how I’ve had “nine lives” through this process:
1) Kaiser Permanente Advice Nurse: On the night of October 15, I called the advice nurse because my menstrual period was extremely irregular, and blood was streaming out of my body like a faucet on day four of my period (very unusual). She was very concerned and thought I was having a miscarriage. She said I had to come in to the emergency room right away if the bleeding continued, or the next morning if it stopped that night. That’s what got me to see a doctor in the first place (after I had been sick for two weeks with nausea and a low grade fever).
2) Don’t Get on that Plane: I asked for an early morning appointment with an OBGYN on October 16 as I had a flight booked that day to head to Philadelphia for a big meeting on reversing childhood obesity. I had been sick for a couple of weeks, but I was still planning to go as I take my work very seriously. However, in an unusual impassioned appeal, my partner Andy Peri begged me not to get on the plane, and my friend and Reiki teacher Christopher Campbell urged the same – they said I was too sick and needed to skip it. I wasn’t listening yet. I had my bag packed when I arrived for my OBGYN appointment, but at the last minute I asked for a doctor’s note to skip my flight so I could get a refund. I later learned from a Kaiser Permanente oncologist that if I had boarded the flight I would not be here today, as my blood counts were so low (and plunging that day) that I would not have been able to fight off infection.
3) Complete Blood Count Test: The OBGYN, Dr. Kimberly Garfinkel, saw me on the morning of October 16 and knew I wasn’t pregnant, but something about my condition made her order a test that is not routine for OBGYN, called a complete blood count (CBC). I didn’t know that she had ordered this test, but the fact that she did saved my life. I went home to take a nap. When I woke up two hours later, there were several urgent phone messages from Kaiser Permanente’s oncology department saying that my blood counts were very abnormal and I had to come back to the hospital right away.
4) Get the Biopsy Done Fast: I was really scared now. Andy and I rushed back to the hospital but it was already after hours and we didn’t know if we’d be able to see an oncologist in ER. Fortunately, Dr. Lori Kim, who became my Kaiser oncologist, stayed late until 8 PM that night to do a bone marrow biopsy on me, a procedure that would determine if I had a blood cancer, or some type of virus. Clearly I was hoping for the latter. To distract me, Dr. Kim and her assistant talked with me about my favorite place to visit – Hawaii – as she drilled into my hip bone to get a good sample of bone marrow that could be tested. It usually takes about a week to get the results back from a bone marrow biopsy but Dr. Kim knew that she had to move fast with me, so she asked pathology to rush the analysis. The next day, on October 17 at 11:30 AM, Dr. Kim called me to say that I had acute leukemia and that I had to be admitted and start chemo right away. I felt like I had been punched in the stomach. Without treatment I would die within a few days or a month at most, it was that urgent. I went back to the hospital that night, and proceeded to spend 103 days as a live-in patient at Kaiser Terra Linda in San Rafael, receiving two induction chemotherapies (the first one was not successful), and one consolidation chemotherapy. I finally made it into remission.
5) An “Angel” During Christmas: While at Kaiser, I had three types of doctors – my oncologist (Dr. Kim), an infectious disease specialist, and a hospitalist (kind of like an in-hospital primary care physician). The hospitalist would change every few days, but since I was being treated for so long, Kaiser decided that I’d have a core group of hospitalists who would get to know me. During the week of Christmas to New Years, none of my usual hospitalists were working so I had to go with someone new. I was read a list of names and asked to choose my doctor. I chose Dr. Clay Angel (who wouldn’t with a name like that)! It was during this time that I was sickest due to my very low white blood counts after chemo (you just can’t fight infections with 0.03 white blood cells). I was running a high fever (for a total of 13 days), had pneumonia, and contracted a nasty swollen infection which some doctors thought had abscessed and wanted to try to drain. The problem is, I was told that I could die if they did the draining procedure because my blood count was so low and I was highly susceptible to developing more infections. My heart rate went up to 140 and I was barely able to breathe. Dr. Angel rushed me to the intensive care unit (ICU) on December 29, and he got all of the doctors who were treating me together to discuss how to handle my infection (which had already been through several CAT scans). They decided (thanks in part due to my urgent pleading) that they would not try to operate to drain the infection. Getting me to ICU and avoiding the knife saved my life, and the infection cleared up on its own a few days later.
6) Prayers and Love: During this time of my high fever and journey to ICU my Mom (Mary Lou Perry), my partner (Andy Peri), and my dearest friend Tara Coyote kept coming to visit and cheer me on, even when I could not lift my head and all I wanted to do was lie there and sleep. I was barely coherent and when I did speak I didn’t make any sense due to my feverish hallucinations and the intense pain killers. My close friends like Tara were sending out Facebook messages asking people to pray for me and organizing group prayer times to amplify the power. People were lighting candles and sending love from all over the world. As I lay there barely conscious I was told of prayers that were being said in Catholic churches, Jewish synagogues, Kunalini and other yoga classes, at Spirit Rock, in Europe, and by Shaman in Hawaii. Friends even brought my photo to John of God in Brazil. In my fever and pain-killer daze in ICU, I felt like I was swimming in the underworld, in a fine line between life and death. It was tiring to keep going, but it was abundantly clear to me, thanks to this outpouring of support, that people still wanted me here on this planet, and when I had no strength of my own, the strength and love of others gave me energy to keep going.
7) Four Liters of Fluid: After I got into remission at Kaiser Permanente I was transferred to Stanford Hospital to have my bone marrow transplant in March. I was told that since I failed the first chemo induction, my only chance to live would be a bone marrow transplant (a procedure that I dreaded due to how famous it is for being dangerous and painful). I had decided to take part in a volunteer clinical trial study at Stanford about preventing chronic graft versus host disease, so three days before my transplant I was given the trial drug ATG. Fortunately, they started me off with a low dose that was intended to ramp up. As soon as we started, I could tell that something wasn’t right. Within four hours my heart rate had soared to 120. I remembered Dr. Angel telling me that if my heart rate ever got that high to sound the alarms with the nurses and doctors (my usual heart rate is around 65 or 70), so I started pleading with the Stanford staff to help me. Then my heartbeat became irregular, I became very short of breath, and my heart rate topped 150. I don’t remember much of that night except for my nurse Katy staying with me the entire time and never leaving my side. They pumped four liters of fluid into my body that night to get my heart down to avoid organ failure. Needless to say, I dropped out of the clinical trial.
8) The Bone Marrow Transplant: As I mentioned, at first I was extremely reluctant to have a bone marrow transplant. Even though I knew it was a good cure for AML, I also knew that about 30% of people my age who have a transplant die within six months, 10% will relapse, and 60% will live. Of those who live, more than half will develop mild or severe graft versus host disease. Plus I knew it would be excruciatingly painful and I was not excited about going through more pain. It was my Stanford doctor, Robert Lowsky, who actually convinced me that I had to do the BMT, and that I would make it through and survive. Dr. Lowsky and his team found me an unrelated donor, through the National Marrow Donor Program, who was a 10/10 match for my tissue type. The male donor was from Europe, 32 years old, and with blood type O+ (that’s all we know about him – it’s an anonymous process). Dr. Lowsky said it was “perfect.” Leading up to the bone marrow transplant, I said a lot of prayers to ask that I would truly get the “perfect” match, and that the cells of the new donor would love my cells and cure me. On the day of the BMT (March 19 – which is called my new birthday), my Mom and some of my closest friends (Andy Peri, Tara Coyote, Samantha Raven and Christopher Campbell) came to my hospital room and participated in what I’ll call a ceremony to welcome this new blood and life into my body. I stated my intentions to be cured and live a full, happy, and healthy life, we sang songs of hope, and Samantha and Christopher gave Reiki to the stem cells as they left the blood bag. As soon as the first drops of blood reached my body, I broke out in tears of joy because I finally knew that I really would live and beat this cancer. The cells made my whole body vibrate with life and love.
9) My Personal Will to Live: The final way that my life was saved has been through my own personal will and attitude. Early on after I was diagnosed with cancer, a friend who is a survivor said to me, “you decide if you are going to live, and then you stick by that, no matter what.” I made that choice to live and fought for it. I was also lucky that the right people and circumstances showed up at the needed times to enable me to escape a sudden death. Usually I’m the type of person who researches everything, but researching AML made me sick. I would see statistics like only 40% of people survive AML, and it would make me feel anxious and hopeless. So I did the opposite of what I usually do, I stopped reading journal articles, and turned myself over to faith and trust – faith that I would live, that I had more to do and be in this life, and that I was not going to be a statistic. I could beat this. There were scary times, especially during my stay at ICU and throughout the bone marrow transplant process, but I took the advice of my long time general practitioner doctor at Kaiser Permanente, Dr. Raymond Brow, and took it one day at a time, sometimes minute to minute. It turns out that staying in the present moment always is a key to happiness, and when you’re sick, it’s vital. Throughout my time in the hospital I also had time to reflect on how I’m going to change my life when I’m well, so that I can live an authentically happy life and enjoy myself more. While I’m still committed to advancing the causes for the good of society, one thing is for sure, I’m not going back to working 80 hour work-weeks and jumping on a plane once or twice a month. Life is too precious.
Huge thanks and immense gratitude go out to everyone who saved my life. I still have a lot of recovery to do – it takes a full year to recover from a BMT — but I’m now certain that I will live.
I also want to thank my whole family (especially my Mom and Andy as my primary caregivers), all of the nurses and doctors who cared for me, my close friends, the women’s circle, the hundreds of people who sent cards, the hundreds of people who have donated money to help with my medical and other expenses (and Tara who organized this effort), as well as all of my Facebook friends who have been my cheerleaders and lifeline to the world as I’ve been mostly in isolation while healing.
Life is a precious miracle. Enjoy.