It was one year ago today, on October 17, 2013 when I got a call that changed my life forever.
Dr. Lori Kim, an amazing Oncologist from Kaiser Permanente called me at 11:30 AM to let me know that the results from my biopsy from the night before showed that I had acute leukemia. She said that I needed to be admitted to the hospital right away to start chemo in order to save my life, and I’d be there for 4-6 weeks to start. I would lose all my hair, should limit my visitors, and would not be able to leave the hospital until I was in remission.
What? I felt like someone had just punched me in the stomach. My thoughts were running wild and with an intense sense of panic and anxiety. How could this be? I didn’t feel that sick. I was the healthy, vegan who didn’t smoke or drink alcohol and exercised regularly. Did they get my blood tests mixed up with someone else?
I asked, “What happens if I don’t start treatment right away?”
Dr. Kim replied quickly in a clear but incredulous voice, “You’re not thinking about not doing treatment are you…?”
“I just want to know all of my options and the seriousness of the situation,” I said.
“It’s serious. You’ll die within a few days to a month,” Dr. Kim said with certainty, “But with treatment, acute leukemia is very curable. How soon can you get here?”
Needless to say, I started packing, but before that I had to make some of the hardest phone calls I’ve made in my life, to tell my partner Andy, my Mom, my Dad, my sister, and my closest friends and co-workers that I was just diagnosed with acute leukemia and I had to stop everything, go to the hospital, start chemo, and completely focus on my healing. We all cried. But everyone was so supportive and loving and said things like “if anyone can beat this you can – you will.”
After Andy and I drove to the hospital, we sat in the parking lot to take some deep breaths before stepping inside. It felt like the calm before the storm. I needed to make some important decisions about how I was going to tell the world about my condition. For a few hours I considered trying to keep it private, but quickly realized that a leukemia diagnosis is not something that you can hide. So, we decided to do the opposite and tell everyone. We knew we needed to stay positive, keep everyone informed, and invite people to participate in sending healing energy. I had always led a public career, but a very private inner life. I had a Facebook account but rarely used it; that was about to change. Right after getting admitted, I put out this message on Facebook before going to sleep:
FB friends- I was just diagnosed with acute myeloid leukemia 36 hours ago. I am in the hospital for a month now and start chemo today. I am telling everyone because I believe in the power of intention, prayer and Reiki. Please surround me in healing light, think of me as strong, imagine ease through the process, and see a full recovery. You can really help me this way. Thank you.
In the morning, I couldn’t believe how much support people started to send right away. I read every Facebook message, cried because people cared, and really felt all the love and prayers at a deep level. It gave me strength and confidence as the chemo began. I imagined it as a healing nectar. Throughout the entire 6 month hospital journey, as I lay on my bed, mostly in isolation, I just kept sharing my health updates and feelings on Facebook and later in this blog. It was very therapeutic to be totally public with my condition, and to feel all of the support from a community that turned out to be much bigger than I imagined, and even included people I hadn’t yet met. Truly, it was and is miraculous that so many people were praying for me in so many different locations and forms. I didn’t know so much love existed in this world. I will always be grateful for this tremendous support, and how people are still cheering me on as I continue to recover. Thank you so much!
Since this is a blog, and not yet a book (but I do have hopes of writing one!), I’ll fast forward through three rounds of chemo at Kaiser from October through February, an extremely scary stay in the intensive care unit in December where I almost died, the prognosis from my doctors that I only stood a chance of living if I got a bone marrow transplant, the intense struggle I had in my mind about the decision to actually go through with the BMT (which is said to be one of the most painful medical procedures that exists), and finally my surrender to life, love and fate.
I knew that my “match” for the BMT was critical, so I spent a lot of energy praying to call in the “perfect match.” I invited others on Facebook to join me in this intention, and miraculously we wound up with Mr. International, the anonymous 32 year old man from Europe. He’s now my hero. He saved my life. I encourage everyone who is healthy to join bethematch.org to be registered as a potential donor. You could save someone’s life too.
I need to say that I spent a lot of time at the hospital wondering WHY I had gotten AML. At first it was all about blaming the outside world. Could I have been exposed to the fallout from the Fukushima nuclear reactor in Japan? Was it because I flew on airplanes 1-2 times a month, and worked 10-12 hours/day on a computer with nearby Wi-Fi and cordless phones? Was it the increasingly intense amounts of EMFs that are now nearly everywhere due to cell phones, SMART meters, and other wireless technology? I still have these questions and I have gotten myself off Wi-Fi and onto corded phones, but I also began to look deeper inside. What was I, Deb Hubsmith, doing that was out of alignment with my health? I started to realize that for my whole life I had been working at a breakneck speed, pushing so hard to accomplish the impossible, to make everything “perfect,” and was putting tremendous amounts of stress on myself to “save the world” without giving consideration to what my relentless advocacy was doing to my health. People always said that if I kept working like that I would “burn out,” but I never took that caution seriously. I was fueled by passion and an intense desire to make a difference in the world. I was also on a runaway train that I couldn’t stop and didn’t know how to get off.
Right before being admitted to Stanford Hospital for the BMT in March 2014, Andy, my Mom and I launched the lovehealingdeb blog, and my dear friend Tara launched a You Caring fundraising site to offset uncovered medical and other expenses. More than 300 people contributed toward my healing through monetary donations, silent auction gifts, purchasing silent auction items, or playing music on the night of my benefit. Christopher, my Reiki teacher, began doing Reiki circles at my house, my friend Samantha continued to give Reiki too, and Tara led me in crystal meditations. It was amazing and magical to have this support walking into such a huge procedure. I have so much gratitude for my friends and family.
The actual process of the BMT on March 19, 2014 was other-worldly in a very positive way. My Mom, Andy, Tara, Christopher and Samantha all crowded into my tiny half of the hospital room at Stanford to support the optimal transmission of the stem cells – my new life. I stated my intention for a full and complete cure, and we sang songs of hope and love as the stem cells dripped into my body over the next hour, with Samantha and Christopher giving Reiki to each drop of blood. As soon as Mr. International’s stem cells reached my body I started to cry tears of joy because I finally knew I would really survive. I felt my body singing and tingling with life force energy. I declared myself cured from that day forward. After the procedure, the Stanford nursing staff sang me “Happy Birthday,” and delivered a cake to signify my new life. Wow. That day was called Day Zero of my new life.
Things got tough after the BMT, but I was expecting the mouth sores and pain. Honestly the thought of the BMT was worse than the actual BMT. But of course, I don’t remember many details because I was on a lot of painkillers – my Mom and Andy have some different stories to tell. On Day +14 after the BMT my white cell count started to go up – that meant that Mr. International’s stem cells were engrafting into my bone marrow, and starting to produce healthy blood cells. That was the goal! Celebration! I was on my way. We continued to cheer on and thank Mr. International.
I was released from Stanford Hospital on April 8 and my Mom and I went to live in a Townhouse that was a part of the Stanford faculty housing. A very nice professor and his family were heading to China for 3 months and we were the lucky ones who they decided to rent to, as I needed to stay close to the hospital. My Mom was my faithful 24 hour/day caregiver who accomplished amazing feats and tests of patience. In the beginning I was very weak, could barely walk, couldn’t leave the house except for doctor appointments, and was basically helpless. She cooked for me, flushed and cleaned my catheter, got all my meds and made sure I took them, did the laundry, and was always cheerful. My Mom made me go on walks each night at dusk to help me regain strength and to ensure that nothing settled in my lungs. My partner Andy came down from Marin to visit frequently, always cheering me up with his humor, warmth and music. We also had other wonderful visitors including my sister Chris who came out to celebrate my Mom’s 70th birthday. I hope I have as much energy as she does when I’m 70.
On June 18, we visited my incredible Stanford doctor Robert Lowsky to get the results of a recent biopsy. I can’t even begin to describe the terror I always felt before getting biopsy results, but this time it was exactly what I wanted to hear, “no trace of leukemia.” It was Day +91 and we were told that I could go home, stop using my mask outside, and I could eat at restaurants. I was also given permission to eat well-washed berries – a big delight I had been missing all spring! I was cautioned to continue to remain completely out of the sun, as it became evident early on after the BMT that I was extremely sensitive to the sun, and I needed to avoid crowds and sick people.
I’ve been home now for nearly 4 months and it has been amazing to witness the transformation in my energy level. When I first came home in June, I had about 40% of my energy. Today I’m at about 70-75%. I’m hoping to be at the 90% level by the end of 2014 and at 100% by the time of my one year BMT anniversary in March. I’m still on immunosuppressants, anti-fungal medication, and antibiotics, but my doctor is gradually starting to decrease my dosages.
I’m still sensitive to the sun and need to completely avoid it, but that should be temporary, and I’m getting my life back! I dance regularly, go walking and bicycling at dusk, and I’ve started my yoga practice again. I’m even enrolled in an advanced yoga teacher training program. I’m reading books, meditating, and watching a lot of movies. I schedule healthy visitors to come to my house, and I avoid crowded locations. Since my immune system is still sensitive I’ve learned to give “elbow bumps” to greet people instead of shaking hands or hugging.
Most of all, I have an ease of mind. I am no longer nervous that the leukemia might come back. I am free of all leukemia and my bone marrow is making healthy cells with my blood counts getting better all the time. While it may not meet medical community standards of time yet for bold declaration, I feel deeply in my heart that I am cured – let me say that again – I AM CURED!
I am excited about my future – an entirely new life where I have a brand new blood type and new immune system. Even the asthma I had since I was five years old has disappeared (Mr. International has hay fever but not asthma and I inherited his allergies or lack thereof).
At 45 years old I’ve started Part 2 of my life. I definitely learned and accomplished a lot in Part 1, but Part 2 is going to be much more balanced, full of love and filled with joy. My Dad always says that on the deathbed people don’t say, “You know, I wish I sent more emails…they talk about love, relationships, and what touched them deeply in life.” That holds true for what I’ve learned on this journey too. Meditation teacher Jack Kornfield sums it up in his book A Path with Heart in the Chapter, “Did I love well?” It’s a good question for us all to ask ourselves.
What a difference a year makes!