Celebration of Life for Deb
Posted Sept. 1, 2015
Updated Sept. 14, 2015 (see 2nd paragraph under Food)
UPDATE NOTE 10/8/15: The program for the evening is structured so that the heart of the program (story sharing, videos, songs by friends, reflections of Debs’ life, etc). will all happen between 6:30 PM and 8:30 PM. If you come at or after 8:30 there will be live and DJ’d music but the main part of the program will have ended by then. If you can only come late and want to dance and/or mingle, please come and enjoy the Valley All Stars (band) from 8:30-9:30 and DJ Hamid Martin until midnight.
Please join family and friends for Deb Hubsmith’s Celebration of Life Memorial on Saturday October 10, at 6:00 PM in Mill Valley, California. Together we will celebrate our beloved Deb’s life, which will include videos, slide shows, stories, sharings, songs, a live band (and DJ music until midnight). Please come in comfortable casual/dance clothing and be ready to dance. Deb really wants all of us to dance at this event!
Saturday, October 10, 2015, 6:00 PM
Mill Valley Community Center
180 Camino Alto
Mill Valley, California
This will be an organic vegetarian potluck. Please bring your favorite dish (appetizers, main course, desserts, etc.). Please label your food with ingredients (indicate if it is vegan or gluten-free) and put your name on your dishes/serving utensils, etc. as there will be LOTS of potluck dishes and we want you to go home with your plates, etc. If you are coming in from out of town, there are two Whole Foods stores in Mill Valley where you can purchase organic vegetarian food for your potluck contribution.
9/14/15 update: This is a green event. To honor Deb’s love for this precious planet by reducing waste, please bring your own plate, utensils and drinking cup (if you cannot, don’t worry, we’ll have you covered); thank you for putting extra energy into stepping lightly on this Earth!
Also please carpool or ride you bike to the event. Remember to have lights on your bike if you ride as Deb’s Celebration ends well after dark.
We are looking forward to celebrating our beloved Deb’s life together!!!
Join us at Deb Hubsmith’s Spirit Celebration at Limantour Beach
Friends and family are invited to attend Deb Hubsmith’s Spirit Celebration at Limantour Beach on Friday August 28th at 10 AM. We will gather to celebrate Deb’s life and honor her beautiful spirit at this ceremony on this gorgeous beach she loved so dearly. Please wearwhite clothing (if you can’t do this, get as close as you can to white– please no worries if you cannot).
What to bring:
• Blanket or sarong to sit on
• Water bottle
• Towel (especially if you will be part of the in-water ceremony)
• Bathing suit (if you are going into the water)
• Food/snack for yourself or to share (there will be no food
served/available at the beach)
• Warm clothes (it’s supposed to be cool out there that day)
• Umbrella (if you are sun sensitive)
Limantour beach is located in the Point Reyes National Seashore (see map link below). Please carpool as parking may be limited. Park in the main parking lot. Walk down the main path and when you get to the beach go to the left- look for signs, flags and listen for the sounds of drums. You will see us gathering near the sand dunes. There are outhouses between the parking lot and the beach.
Posted August 22, 2015
Family, colleagues and friends are invited to attend funeral services for Deb, which will be held at Limantour Beach in West Marin on Friday, August 28 at 10 AM. Please carpool (or ride your bike) and park in the main parking lot; head left on the beach.
A Celebration of Life for family, friends and the wider community is planned for Saturday, October 10 in the evening at the Mill Valley Community Center. We will celebrate Deb’s life with music, multimedia, story sharing and lots of dancing. This event will be Deb’s thanks to you for your love, prayers and the actions you take to make the world a better place. More details will be forthcoming on lovehealingdeb.com.
In lieu of flowers, gifts can be made in Deb’s name to the Safe Routes to School National Partnership (saferoutespartnership.org/donate); or the Leukemia and Lymphoma Society (https://donate.lls.org/lls/donate).
Another Angel in Heaven
Posted August 18, 2015
Today I lost my beautiful daughter Deb after her long and hard fought battle with acute myeloid leukemia. Deb passed away peacefully this afternoon at home. I will miss her with all my heart, but along with my sadness I feel relief that her suffering is now behind her. My daughter Chris and son-in-law Andy join me in giving thanks to all who have supported us with love and encouragement over the past two years.
Posted August 12, 2015
Deb has asked me to share this with you. Sweet friends – after nearly 2 years of struggling with acute myeloid leukemia cancer, I am going on Home Hospice. This brings me peace, relief, and I feel the love even deeper. Thank you all! The best way to support me now is ease and flow to the Great Spirit home. Namaste. Mahalo. Trust.
From Mary Lou: I am so blessed and proud to have Deb, my beautiful, loving daughter, who has enriched my life in so many ways and given me so much joy. I know from the many messages of praise and love for Deb that we receive that she has played a big role in the lives of countless people, and been an inspiration for many to follow their dreams. Through my sadness I rejoice in Deb’s beautiful life which has been a gift to me. Deb has battled her leukemia long and hard, and now has arrived at a feeling of peace. I marvel at how she has handled her illness from the initial shock of the diagnosis, through the many ups and downs, and the difficult treatments and lengthy hospitalizations. Deb has fought with intensity and given it her all, just as she has approached everything in her life.
We thank our friend and Spirit Rock teacher Debra Chamberlin Taylor, who has been a wonderful support to Deb, Andy and me over the past couple of months in guiding us through this process of transition. We thank our families and friends for the love and support you have provided, and are grateful to Deb’s closest friends for your devotion to Deb, being here so much to provide moral support, assistance, healing, and lots of love.
Thank you for keeping Deb in your prayers.
With love and gratitude,
Posted July 6, 2015
I am still open to a miracle cure, but over the past few weeks I have finally come to acceptance that due to my severe health condition starting with leukemia 21 months ago, I may not have much time left on the Earth plane. This acceptance comes with deep sadness but also some relief, accepting reality as my body declines. Everyone will die someday. I feel very vulnerable and also connected to source. I feel that I’m being guided.
I am so grateful for all of your love and prayers. Acceptance is the key to alleviating suffering. In the meantime I spend my time in bed and at hospitals. I try to be grateful for the wonderful life I’ve had, and small blessings like how the leaves dance on the trees outside my window and how Andy looks into my eyes and assures me we will always be connected. Namaste.
Deb’s Gymnastics Video … 1986
Posted August 4, 2015
This is Andy, Deb’s husband. I’m spending lots of time with my beloved Deb as she continues on her journey in this life. Some days are more intense than others with Deb experiencing lots of pain much of the time. We are living and loving and basking in all of your love and prayers. Our deepest gratitude back to all of you!
Deb’s Mom Mary Lou brought an old VHS tape from home recently of Deb doing gymnastics at age 16 in 1986. Check out the link below to see Deb in action; this is what Deb was doing before her yoga and dancing days. Enjoy!
Living with Leukemia
Posted June 16, 2015
It’s been many weeks since we provided an update on Deb’s health and her battle with acute myeloid leukemia, one of the most challenging and low survival rate cancers. For the past weeks, we have been waiting for results from the donor cell infusion that took place on April 1st. Unfortunately, the procedure was not successful.
Deb has become more and more tired since that time and spends much of her time in bed or getting blood transfusions at Kaiser. This is very challenging for her as she has always lived a very active lifestyle dancing, bicycling and walking, etc. Deb has lost 40 pounds since this journey began further contributing to her weakness; she has difficulty walking without assistance. She is deeply missing her old life and being with all of you in the community.
Deb recently had another bone marrow biopsy and the results are similar to her last two biopsies. Her bone marrow has a condition called serous atrophy which means the fat cells and stem cells that should be there have atrophied and been replaced with a gelatinous substance. The biopsy also shows clusters of primitive cells that may or may not be leukemia. They may be baby stem cells that cannot grow because the marrow is not healthy. Stem cells need a healthy bone marrow supporting structure in order for them to grow. There is no benefit to doing another donor infusion now while Deb’s bone marrow is in this condition. Deb’s doctor said if she can gain about 25 pounds in the next 2-3 months, there is a chance that her marrow will recover. Then she could have the second donor infusion, which could take months to a year to determine its success; the chance of success is between 5% and 15%, assuming no complications.
Deb is trying very hard to eat more, but her stomach can only hold so much and then she sometimes has stomach pain. But she is eating significantly more than she was a month ago, so we hope her stomach is stretching and will continue to be able to accept more food. Her doctor has also indicated that this weight gain over the coming months is necessary if she is to have a chance of recovering. Deb is continuing to have platelet and red cell transfusions as needed – this is what is keeping her alive (if you’re not a blood donor, please consider becoming one!).
Deb has recently developed neuropathy (tingling and numbness) in her toes and feet, which is painful, uncomfortable, and makes it more difficult to walk. We are rubbing Deb’s feet daily with neuropathy oil.
Deb, Andy and I thank you all for your love and support.
A Beautiful Wedding and more … December 28, 2014
Posted December 29, 2014
People have been asking me (Mary Lou) why there haven’t been any recent updates, and the answer is simply that we have been very, very busy. The happy news I have to share is that Deb and her sweetheart Andy were married on Sunday, December 28, in a lovely home ceremony. It was iffy to the end whether Deb would be well enough to be out of the hospital, but somehow she rallied and was able to come home for a couple of days and be married in the presence of close family and friends. Deb was a stunning bride, and Andy a handsome groom. We all shared in their strong love and devotion for each other, and wish them many years of happiness together.
On the medical side, the last two months have been quite tough. We had been praying for a miraculous healing over the past few weeks, with the hopes that the donor cells would rally and kill the leukemia cells, but this has not happened. In addition, Deb became sick with a bad cough, wheezing, and shortness of breath. The onset began slowly during the month of November, but has escalated significantly during December. Deb’s doctor had cautioned that something that would take a healthy person a week to get over could take her a couple of months or more, since her immune system is compromised. After a few doctor visits, x-rays, CT scan, additional meds, and several outpatient red blood cell and platelet transfusions, Deb was finally admitted to the hospital on 12/20, released on 12/26, and re-admitted on 12/29. The only thing she has tested positive for so far is the rhinovirus, which is the common cold. Today they did another x-ray and CT scan, as she still has a deep cough and requires oxygen to ease her breathing. Deb suffered from asthma since she was 5 years old, but her asthma had gone away after her stem cell transplant, when she acquired the immune system of her donor. She had several months of no asthma and no asthma meds until the leukemia recurred again.
Deb’s chemotherapy was scheduled to start 12/29, but that has been delayed as they would like to clear up the respiratory issues before starting chemo if possible. Deb is expected to remain in the hospital for at least a month, as it takes time after the chemotherapy for her blood counts and immune system to build back up.
Thank you all for your prayers and caring, and many messages of hope and encouragement.
Rivers of Hope
Posted December 20, 2014
Unfortunately, my road to the cure for AML just became way more intense. My Stanford doctor informed me yesterday that we need to start live-in chemotherapy again, as soon as possible, as the leukemia cells in the bone marrow have now spread to the blood – it’s definitely recurrent leukemia. I am scheduled to be admitted to Kaiser Permanente in Terra Linda on December 29.
My soul keeps searching for answers as to why this is happening to me, and I’ve realized that it’s because I need to change my life completely. I still love advocacy, having and implementing visions for the future, and working with others to make the world a better place. But my spirit guides are telling me right now it needs to be a priority to change my inner world, and go deeper through meditation, breathing, visualizations and gentle yoga. I have done much of this over the past 14 months, but apparently not enough. So I humbly return to the practice. Any tips you have about maintaining a dedicated spiritual practice would be greatly appreciated.
I haven’t left my house except to go to the hospital for the past 5 weeks, because I have low blood counts, was suffering from extreme bone pain, and am now dealing with bronchitis. I was lonely at first, but I am learning how to go within, and I have been so lucky to enjoy the 1:1 company of some close friends, healers, my Mom, my deep sweet love Andy, and Christopher, my house mate, teacher and dear friend. I am on the most intense intensive I could ever imagine, and I know that how much I delve into the practice of deepening my soul will also determine my survival. So I dive deep. And while I try to stay brave, and think I am most of the time, I also cry rivers of tears for the life that I want to continue living, in health, with Andy, and with my community and family.
The promising new drug (PD-1 inhibitor) that Stanford was talking about using for me is unfortunately not available to AML patients right now, although it has had great success with lymphoma and lung cancer patients. I was crushed to learn this news, as chemo is necessary now, and I will go through all of those side effects again, including losing my hair which has grown to be a little more than an inch long.
On December 29, I will be admitted to Kaiser for 4-6 weeks having intense chemo for 5 days (and then recovering at the hospital). My Stanford doctor is contacting Be The Match to reach my donor, Mr. International, to ask him to please give me more life giving stem cells, which will be infused after the chemo (hopefully only one chemo treatment, but I may need two). I am sending positive energy to Mr. International’s cells in my body to fight the leukemia and collaborate with me to return my full health.
I need to be reminded sometimes to have faith and trust – as that is my guiding light right now, along with love, hope and dreams. Love has never felt more real.
I had thought of discontinuing treatment due to the 10-12% survival rate for recurrent leukemia, and simply passing away, but there is zero percent chance of survival if I do that, and I want to LIVE! So with a determined heart and trust in the process – I delve onward, to the CURE. Thank you for your love, prayers and support.
Live Video Recording of my song “Deeper Inside”
Posted October 28, 2014
Here’s a “home grown” live video recording of my song “Deeper Inside,” which is about my “come back” from being diagnosed with leukemia last Fall. Special thanks to Anny Owen Densmore who masterfully put the lyrics to music and encouraged me to write and perform the song as a form of therapy. In the video, Anny is accompanying me on vocals and keyboards, Bob Densmore is on bass, and Mika Scott is on drums. Kudos to Andy Peri for shooting and posting the video, and for all of his inspiration and love! Go team! http://www.youtube.com/watch?v=-cjM3L0oFGE&feature=youtu.be
What a Difference a Year Makes!
Posted October 17, 2014
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!
How My Life Was Saved – Nine Times
Posted May 4, 2014
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.