Donor Infusion

Andy and I and Deb’s friend Christopher went with Deb today to Stanford, where she received her donor lymphocyte infusion (DLI) as an outpatient.  The lymphocytes, a type of white blood cell, were collected from Deb’s original donor, Mr. International, who remains anonymous to us.  The hope is that the donor cells will attack and kill the leukemia cells and allow space for the good cells to grow.

It can take a couple of months before we know if the DLI has worked.  Deb is at risk for lower blood counts and infection during this time period.  Graft vs host disease (GVHD), where the donor cells see Deb’s cells as foreign and attack them, can begin in 4-10 weeks.  This is a complication that happens 40-50% of the time, and can range from mild to severe.

Thank you for your support, and please continue to hold Deb in your prayers as she continues her fight against the leukemia.

Riding the Waves

Deb has been out of the hospital for a month now, and I know an update is long overdue.  Deb was extremely weak when she came home, and is still struggling to do basic things like walk up stairs alone.  For the first couple of weeks she began to gain weight and get stronger from eating better, sleeping more, and doing some gentle exercises.  Deb has a visiting nurse who comes three times a week to evaluate her progress, draw blood to determine if a transfusion is needed, and to discuss any issues that we may have.  Deb continues to require red cell and platelet transfusions about every 2-3 weeks at Kaiser Permanente.

Deb’s breathing difficulties and wheezing have vastly improved over the past 10 days, but the cough persists.  She started to receive acupuncture treatments and take Chinese herbs to help with her lung problems.  Deb’s Stanford doctor gave his approval to seek this form of treatment.   It’s amazing how much her asthma improved quickly.

Two weeks ago Deb began running a fever, and this has completely drained her energy.  Last week a chest x-ray showed a small spot on her lung suspicious of pneumonia.  She was put on an additional antibiotic for 10 days (she was already on three).  Yesterday a second chest x-ray was taken and was clear – no pneumonia.  But her cough persists.  She is also very tired again, naps often, and has little energy since the fever began.

Over the last week or so, Deb has been throwing up some, and as a result is not eating a lot and has lost the weight she had gained back.  She’s at 80 pounds, her weight when she was released from the hospital (normal for Deb is 110 – so this is nearly 30% of her body weight). Today we did an x-ray of Deb’s stomach/intestines to see if there is a blockage.  The x-ray was clear of any blockage but apparently she has a lot of stool stuck in the small and large intestines which would contribute to the lack of appetite and throwing up.  They are still looking to see if there is infection anywhere which might be the cause of the fever; or it could be caused by the leukemia.  So, testing continues.

Deb is scheduled to have a donor lymphocyte infusion (DLI) on March 31 at Stanford, but we may only be able to do this procedure if the fever is gone.  They don’t want to infuse if there is an active infection.

The DLI is an infusion of lymphocytes (a type of white blood cells) from Deb’s original donor, Mr. International, and is intended to produce an anti-tumor response.  This “graft-versus-tumor” effect (GVT), in which the donor’s cells attack and kill any residual cancer cells, is effective in curing AML patients 10-12 percent of the time, but the doctor said Deb has a 10-20 percent chance.  Another 25 percent of patients are predicted to survive but have other health problems from graft versus host disease (GVHD).  With graft versus host disease, the donor cells see the good cells of the recipient as foreign and attack them too, as well as attacking the leukemia cells.  The GVHD can range from mild to severe.  Deb’s inability to be in any sunlight following her transplant last March is actually considered to be “mild’ GVHD, although it represents a huge change in lifestyle for my daughter who loves the outdoors, bicycling, hiking, swimming, and being in the sun.

We thank you all for your support, prayers, and positive energy, which help us more than you can imagine. Big decisions will be made in the next week.

Looking for the Silver Linings

Deb Andy for March 2015 blog2Thanks to everyone who has been sending me positive energy toward healing my asthma and leukemia. Many of you know that I nearly died on the CT SCAN table at the end of January. I was brought back to life with the aid of a breathing machine for 5 days of complete stillness.

I’m very happy to be home from the hospital now, and I try to stay positive and see the silver linings, but to be honest, I feel extremely sad about how much my life has changed in the past 17 months. In my last chemo cycle, I lost all my muscle while on bed rest (30 pounds total — so I struggle to even walk up stairs without help). I miss being with groups of people, at gatherings and going to dances. Well – enough whining…

For the leukemia, I have decided to do the last thing that western medicine has to offer me — a donor lymphocyte infusion. This is an infusion of more cells from my donor Mr. International. In 10-20% of people with recurrent leukemia, this cures the disease- I plan to be one of those lucky people and am focusing my energy to harmonize with Mr. International’s cells, so that his cells and immune system (in my body) will have the strength to rid the leukemia forever (and forgo any harm to me which can be a side effect.) We don’t yet have a date for the procedure but it should be within the month.

Thank you to everyone for your healing love and light, and your positive vibrations. While this continues to be the hugest struggle of my life – there are still positive aspects – especially the love I feel from everyone. Special thanks and immense gratitude to my most amazing, loving and dedicated husband Andy Peri.

Rivers of Hope

Deb at Lindsay weddingI am posting this lighthearted, healthy photo of me, as I fully aim to be healthy and cured of cancer forever! I encourage you to think of me this way – thank you.

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.

What a Difference a Year Makes!

Deb 101514bIt 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!

Adjusting and Watching the Blood Counts

Some people watch the stock market, examining each up and down and analyzing what it means.  I watch my blood counts…

During my last visit to the Stanford Clinic, Dr. Lowsky said that I don’t need to have any more biopsies if my blood counts are good, as normal blood counts are indicative of no leukemia. That news was music to my ears as biopsies hurt and always made me anxious (I’ve had seven of them since October 2013 and hope to never have another).  I generally get my CBC (complete blood counts) every two weeks these days to make sure I continue to stay stable.

Last Monday, on Day +152 I got a little scared.  My blood counts had dropped slightly after a long time of them being constant or increasing. The labs also showed an “immature” white cell.  In a near panic, I immediately contacted my awesome doctors at Stanford and Kaiser. They quickly reassured me that my blood counts were still in the normal range, and that immature cells usually just haven’t matured yet into healthy normal cells. Their quick response and this affirmative reply definitely put me more at ease, but I decided to go back and get more labs to have the numbers tell the story.

On Day +157 (Saturday, August 23) I was thrilled to see that my blood counts were back up!  While most people probably aren’t concerned with the details, I know that some who are recovering from leukemia check my site, so I’ll post my counts which were: 4.2 white cells, 11.7 hemoglobin, and 168 platelets.  Who ever thought that blood counts could provide so much joy!

I am very happy to have this second chance at life, and I try to have patience and be positive as I continue healing. Recovering from a BMT certainly DOES take a lot of patience. And the truth is, I deeply long for the days when my energy will fully return, when I can hug friends again, when I can work and travel, and when I can be outside in the sunshine. For now, the journey continues to be very inward as I mostly stay inside my home.

I’m so grateful to have so many special friends in the community who are extremely generous with their professional healing and creative gifts. I want to acknowledge these super kind friends who have offered me their services for free. My partner Andy for never leaving my side, loving me completely, and healing me with music, laughter and massage; My dear friend Tara for her crystal healings and meditations, leading me in shadow work, and heading up the love healing deb medical fund campaign; Christopher my new housemate for always being cheerful and giving me awesome Reiki healings; Padma for amazing hypnosis healings; Osher who gave me a wonderful sound healing; Samantha for the sweet Reiki and energy healings; Lindsay for deep massage; Matthew for a beautiful sound and crystal healing; Alison for yoga DVDs and sequence ideas; and Anny musician extraordinaire for writing a song with me about my healing journey which we’ll be recording soon.

Thank you too to my long-time friends Amity, Rachel, Pam, Devi, Peter, Wendi and Jai who visit and send me lots of encouragement and love. Also, special thanks to my Super-Mom (who I miss greatly), my Dad and his wife Elly, and my sister Chris and her kids for being so present and caring.

I’m very grateful for ALL of my family and friends (too many to mention) who continue to reach out and send their prayers and love for my full recovery, including those of you who read this blog and my friends on Facebook, and those of you who donated through the medical campaign. Thank you so much to everyone who is putting energy toward my complete cure – you are all the best! I’m certain that my good progress and ongoing healing from leukemia is directly related to this incredible outpouring of love!

And thank you too to “Mr. International” who donated his stem cells so that I could live. Although I have no idea who he is, I always feel like “Mr. International” is some kind of Super-hero; an ally who is always at my side, pulling for me, keeping my blood counts high and protecting me from ever having a relapse. Mahalo and onward in health!

Finally, I’m very sorry to hear the reports of the homes, businesses and historic buildings damaged by the 6.0 Napa earthquake on Sunday morning, and the 120 people who went to the hospital, several in critical condition.  My sympathy goes out to all those who were injured or affected in any way.  We definitely felt the quake here in Fairfax where I live (only about 40 miles from Napa), but we were far enough away that we were fortunate not to sustain any damage.

Reflections on Our Stay in Stanford

Hi everyone, this is Mary Lou, Deb’s Mom.  I haven’t written in a while since Deb has been feeling better and able to write her own blogs.  The updates that Deb writes appear under the “Deb’s Blog” tab, so be sure to check there in the future, as I probably won’t post much more under “Health Updates.”

Deb continues on her road to recovery, with her progress monitored by Dr. Robert Lowsky, her Stanford doctor.  She has blood taken every couple of weeks to be sure her blood counts are still good, which is a key sign that there is no leukemia present.  She continues on medications to help prevent infections and to prevent the possibility of her donor’s cells attacking her body.  She should be weaned off the meds over the next 6 to 12 months.

All in all, Deb is doing very well and we are extremely pleased and grateful to her anonymous donor (Mr. International), and to the outstanding staffs at Stanford Hospital and Kaiser Permanente.  In addition to the bone marrow doctors, a large part of patient care is provided by the excellent oncology nurses and nurse practitioners.  Stanford performs more than 300 stem cell/bone marrow transplants each year.  The blood and marrow unit consists of 24 beds, and was always filled to capacity while Deb was there, with an overflow of patients on another floor.  Stanford is building a new hospital which is expected to be completed in 2017, and will significantly increase their number of in-patient beds.  The new hospital building will be connected to the existing hospital by a pedestrian bridge and an underground tunnel.  The hospital is being constructed to withstand a magnitude 8.0 earthquake.  Click here to read about the challenges faced to meet seismic requirements in California – something we don’t have to deal with on the East coast.

During the time that Deb was in the hospital and then recovering at the townhouse we rented, whenever Andy was there and I had an opportunity to go out, I would walk around the Stanford University campus.  If I had to be away from home for several months, I couldn’t have been put in a better place for walking, sightseeing, culture and weather!  Situated in Palo Alto, CA, about 30 miles south of San Francisco in the Silicon Valley, the Stanford campus, at over 8,000 acres, is one of the largest in the United States, and also one of the most beautiful.  Frederick Law Olmsted, famous for designing Central Park in New York, designed the physical plan for Stanford University’s campus.  Only a few roads on the campus are open to cars, so the primary means of transportation for the students is on foot or by bicycle.  There are about 13,000 bicycles on the campus daily.

Hoover Tower
Hoover Tower

Stanford was founded by Leland and Jane Stanford in memory of their only son, Leland Jr., who died of typhoid fever at the age of 15.  From its inception in 1891, Stanford was co-ed, non-sectarian and tuition-free (which it remained until 1920).  President Herbert Hoover was in the first graduating class, and met his wife there, the first woman to graduate from Stanford with a degree in geology.  The Hoover Tower, built in 1941 to commemorate the 50th anniversary of Stanford, is a 285 foot tower with an observation platform on the 14th floor.  The lobby of the tower houses the Herbert Hoover and Lou Henry Hoover exhibits, which feature memorabilia from the careers and lives of the 31st U.S. president and his wife.  The observation deck at the top affords 360 degree views of the campus, the Santa Cruz Mountains, and the San Francisco bay area.

Stanford Memorial Church
Stanford Memorial Church

The Cantor Arts Center is a notable art museum on campus that houses one of the largest collections of Auguste Rodin sculptures, an outdoor Rodin sculpture garden, as well as many other art, photography and sculpture exhibits each year.  The non-denominational Memorial Church, visible upon entering the University via Palm Drive and located in the main quad at the center of the campus, is considered the University’s architectural crown jewel.  Although extensively damaged in both the 1906 and 1989 earthquakes, the church was restored after each.  There is a beautiful cactus garden on campus, as well as other gardens and fountains, and many musical and cultural events are offered throughout the year.

So if you find yourself in the San Francisco Bay Area, visit Palo Alto, take a stroll through the town, and have dinner at one of the many popular restaurants.  If you’re a fan of old movies, check out the Stanford Theater, which opened in 1925 and still offers double features with an organist playing in between shows.  Walk a few blocks to Addison Avenue and see the HP Garage where Hewlett and Packard formed their partnership in 1939.  And be sure to save some time to visit Stanford University, and take a guided tour of the campus.  You won’t be disappointed!

Mask Free Dances and More!

On July 17, I had an awesome visit with my Stanford bone marrow transplant doctor, Dr. Robert Lowsky.  The date of the appointment was exactly nine months since I was diagnosed with leukemia; now the cancer is gone and the doctor says I’m doing great! I am grateful beyond belief.  Here’s the update:

Sometimes it takes turning life upside down to get a new perspective.
Sometimes it takes turning life upside down to get a new perspective.
  • He says my blood counts and chemistry are “excellent.” The white cells are still below “normal” levels but that is because I’m on the immunosuppressant Prograf to keep my donor’s immune system calm and happy inside my body.
  • I can go to dances now without my HEPA filter mask— yee-haw! Ecstatic dancing is one of my main forms of being social and exercising. It is so much more fun (and easier to breathe) without the mask. I took full advantage of this new freedom last weekend by attending the Dance Camp reunion and Open Floor dances. These DJ dances are free of alcohol and drugs; we use dance as a form of meditation; there is no talking on the dance floor.
  • I still have to stay out of the sun to avoid getting a rash, and I’m still using the cortisone cream, but I don’t have to go on oral prednisone. Staying out of the sun should keep it that way.

    Yoga - reverse side angle
    Yoga – reverse side angle
  • I’ve had a weird “electric” type of sensation in my lower spine when I look down for about a month now – my doctor said I should start exercising more to rebuild my muscles. The sensation is still there, but exercising more seems to be lessening the feeling. I ride my bike or walk at dusk each evening, dance a couple of times a week, use my stationary bike, and am doing yoga regularly.
  • I have permission to start the next level of yoga teacher training (500 hour program) in October; Dr. Lowsky encouraged me to start doing more yoga now to build up to this, so I’ve been practicing for an hour each morning.

At this point – on Day +127 since the BMT – I seem to have regained about 50 percent of my energy level.  I still get tired, nap each day, do a lot of resting, and have some stomach issues, but I’m definitely improving!  I have a confidence now that the leukemia is gone forever.

I’m meditating on harmonizing my body with my donor’s immune system, bone marrow and blood. It’s amazing to realize that at this point in the process all of the blood in my body is from the cells of my donor, “Mr. International.”  While I’m still restricted with what I can do right now, I’m visualizing myself fully healthy, thriving and able to go out in the sun again someday.  In the meantime, I have the curtains drawn and I’m doing a lot of reading, watching movies, enjoying short visits with healthy friends at my house, and happy to be alive.

Riding Out the Storm

I’m honored that the Marin County newspaper the Pacific Sun published a cover story this week on my recovery from leukemia and my environmental and health career since the 90’s — improving walking and bicycling in Marin and nationwide. You can read it online or below.  Special thanks to the author Rick Polito, the photographer Robert Vente, and the Sun’s Contributing Editor Jason Walsh.

http://www.pacificsun.com/news/feature-riding-out-the-storm/article_48d01862-07b6-11e4-88d1-001a4bcf6878.html

Pacific Sun Feature Story: Riding out the storm

Safe Routes to School founding director Deb Hubsmith talks balancing career and health

by Rick Polito

Deb Hubsmith_PacSun_sitting_6-27-14It would be easy to take Marin’s network of bike routes, paths and tunnels for granted and assume that the bike-centric county that invented mountain biking would naturally have a world-class infrastructure for the two-wheeled throngs towing their kids and groceries home in Burley trailers.

It would be easy to miss the fight that turned Marin into a model for the nation.

But even then it’d be hard to miss the energy that Marin County Bicycle Coalition (MCBC) founder Deb Hubsmith radiates through every foot of bike path in that model. Anybody who has met the 45-year-old bike advocate knows that no-blink energy. There are power plants with lower wattage. She was leading or in the mix on every bike project even before the MCBC was founded in 1998.

Maybe that’s why it’s so hard to think of what she has gone through in the last eight months, nearly every day bed-bound, struggling with acute myeloid leukemia, isolated from the world while her immune system crawled back after a bone marrow transplant. The biopsy last month showed her cancer-free, but one could easily expect to see a shadow of that former force of will who stood up at city council and community meetings across the county, a softer, more faint voice.

You could expect that until you talk to her. She’s the same Deb Hubsmith, with the same plans, dreams and, of course, energy. We talked to her last month about her own journey through cancer and now recovery and the journeys she’s taken by bike, stitching together the network Marin cyclists might take for granted if they didn’t know the woman and the stories behind it.

*****

What was it like when you learned you had cancer?

It was a huge shock. The diagnosis came on Oct. 17, 2013. I had just been in Washington, D.C. two weeks before, making speeches and organizing the first “Everybody Walk” summit. My symptoms came on really quickly and I ended up going to the Kaiser Permanente hospital and getting a complete blood count test. I was actually supposed to jump on a plane that very day to go to Pennsylvania for a meeting about reversing childhood obesity and I didn’t get on the plane. That saved my life. I ended up in the emergency room instead. I was admitted to the hospital immediately and they started chemotherapy two days later. I ended up living at Kaiser Permanente for 103 days while I went through three rounds of chemotherapy. The hardest was between Christmas and New Years when I wound up in the intensive care unit with pneumonia, a GI (gastrointestinal) tract infection and a high heart rate. My white blood cell count dropped to zero. I was told that I needed a bone marrow transplant to survive. Kaiser has a relationship with Stanford Hospital so I came down to Stanford and the doctors said that I had a greater than 50 percent chance of living if I got the bone marrow transplant.

What was the next step?

They found me an unrelated donor—who was a 10-out-of-10 tissue-type match. All I know is that he is an extremely generous 32-year-old male from Europe and his bone marrow is saving my life. My new bone marrow is actually the bone marrow of my donor and my blood type is transferring from B+ to O+. I’m taking on the new immune system of the donor. It’s a really huge procedure. I had a lot of pain when I was in the hospital but now I’m doing really well. I had to live down in the Stanford area for a few months. I am back in Marin and June 27 was day 100 after the bone marrow transplant, which is the magic day for BMT patients because once you make it to day 100, you have a really good chance of survival.

What can people learn from your experience?

My life was saved because of this donor. It’s actually easy to become a bone marrow donor and only 70 percent of the people find matches, so I encourage everybody to join www.bethematch.org to get their name in the national bone marrow registry. I’m alive today because of the generosity of others and I’ve documented my journey of healing from AML (acute myeloid leukemia) at a website (www.lovehealingdeb.com) that’s been viewed by people in more than 51 countries. It’s been quite a journey and I am so grateful for all the help that’s been given to me.

What have you learned about yourself?

I learned that it’s critical to have balance in my life. My career had taken over all my waking hours. I was working about 80 hours a week and traveling on a plane at least once a month. I did all of this because of my urgency to save the world and in the process, I didn’t take care of myself. I learned that it’s critically important to have a balance. I learned that the truly meaningful aspects of life are about connecting with others. I’ve been blown away by how generous people have been. More than 300 people have donated to my medical funds and people all over the world have said they’ve been praying for me. Because chemotherapy knocked out my immune system, I basically had to live in isolation for the last eight months. I’ve used Facebook and my website, www.lovehealingdeb.com, to communicate. I’ve become more vulnerable going through this and people say that this vulnerability is inspiring to them. I can’t change the world without supporting my own emotional, spiritual and health needs.

How are you going to keep centered?

I am taking all of 2014 off from work to heal and when I return in 2015, I’m hoping to go back to the Safe Routes to School National Partnership (www.saferoutespartnership.org) as a part-time president. I used to try to do it all and now I know that it’s critical to nurture many leaders. I want to be a leader of a new paradigm for improving health for people and the planet from a place that supports collaboration, distributed leadership and raising consciousness worldwide. I’ll be taking more walks, going to more dances, meditating more often and going through the next level for yoga teacher training. That union between mind and body is something that’s truly important and will be healing throughout my whole life. I’m planning on limiting my work travel to stay off airplanes as much as possible and enjoy more time for myself.

*****

What brought you to Marin?

I was born in New York City but I started talking about moving to California when I was nine. There was something about California that just simply pulled me out here. I moved here in 1992 just after I graduated from college with a degree in environmental science and resource management, and I landed here in Marin. I thought it would be a location that would be ripe for environmental innovations.

Deb Hubsmith w Umbrella Bike_6-27-14How did environmental innovations turn to bicycle advocacy?

In college, I started out studying civil engineering and by the time I got to my junior year, I realized I didn’t really want to build roads and bridges. It was important to me to do what we could to save the environment. In ’89 I changed majors. When I moved here, I wanted to work for an environmental organization and, as I talked to different groups, people kept telling me that Marin’s major environmental problem was traffic. In 1992, that was something that was totally new to me because back east, we were dealing with toxic waste sites and factory pollution. I was doing work for the Green City Project in San Francisco and driving my car every day when the director of the San Francisco Bicycle Coalition told me I wasn’t a real environmentalist because I was driving my car everywhere. I got in a car accident in 1996 that left my car totaled and I decided that it was time to start to walk the talk so I didn’t get another car. I started bicycling, walking and taking public transit. It was so hard to get around that I ended up becoming an advocate for bicycling.

What did the bike infrastructure look like in the mid-1990s?

There were a lot of disconnected pathways and the culture wasn’t yet supporting bicycling in Marin County, but there was clearly the potential for bicycling to be something great. There were discussions that were going on in Marin at that time in 1997, 1998 about bringing forward a sales tax for transportation to make improvements, and I ended up going to those meetings with Wendi Kallins, who is the person who I founded Safe Routes to School in Marin County with. We started having conversations after those meetings about what we really needed to do in Marin, and that was improving transportation, creating more walking and bicycling, and really involving kids and families.

What is the difference between 2014 and when you started the Marin County Bicycle Coalition (www.marinbike.org)?

At that time, the infrastructure in Marin was very patchwork. It was hard to encourage bicycling. There was also a lack of consciousness. When I gave up my car in 1996 and I started bicycling everywhere, people used to think that was completely unbelievable. They didn’t understand why I would want to live without a car.

What does that consciousness look like now?

The culture in Marin County has shifted dramatically more in favor of bicycling and walking due to concerns about health, obesity, global warming and also traffic congestion. When we started Safe Routes in Mill Valley in 2000, kids who arrived at school by bike were confronted by other kids wanting to know what was wrong with their car. Today, there are hundreds of bikes that are parked at the new Middle Valley School every day. If you sit in Fairfax on Center Boulevard at any time of the day, you’ll see ordinary people just bicycling, not only for recreation—people in street clothes, doing errands, sometimes with kids in tow. There has been a huge attitude shift.

What’s the big picture like for infrastructure now?

The county has been taking bike counts at 12 locations since 1999 to measure how many more people are bicycling, and there’s been a 159 percent increase on weekends and a 172 percent increase on weekdays for bicycling since 1999. We now have 60 miles of separated pathways, and 50 miles of bike lanes. The MCBC worked with elected officials to bring in more than a $140 million to support bicycling and pedestrian infrastructure since 1998. The Cal Park Hill Tunnel connects San Rafael and Larkspur. We have the Lincoln Hill Pathway from the San Rafael Transit Center up to Terra Linda. The Transportation Authority of Marin and the Metropolitan Transportation Commission just allocated $20 million to build phase two of the Central Marin Ferry Connection, a bridge over Corte Madera Creek to connect with Redwood Highway. That project was originally planned to be a huge highway-widening project and instead it turned into a bicycle project and a train project. That in and of itself shows how attitudes have changed in Marin County. We have racks on buses, bike parking at transit centers, and we have the SMART train and pathway that was approved by voters back in 2008.

Obviously, MCBC played a huge role, but what other factors and people made a difference?

I want to recognize Patrick Seidler, the president of Wilderness Trail Bikes and Transportation Alternatives Marin, who’s been working to make Marin a model bicycle community for the nation for decades. I have to recognize Marin County Supervisor Steve Kinsey, who’s been the biggest local, political champion for bicycling. He’s always seen the connection between bicycling, walking and public health and reducing greenhouse gas emissions. The late Charles McGlashan was extremely supportive as well. I worked really closely with both Steve Kinsey and Charles McGlashan on getting the Non-Motorized Transportation Pilot Program (NTPP) adopted by Congress, which brought $25 million to Marin County to demonstrate how bicycling and walking could help to solve health and environmental problems. Former Mayor Al Boro of San Rafael was a key supporter with the old guard and with projects like SMART and the Lincoln Hill Pathway. I worked with late Minnesota Congressman James Oberstar on Federal Transportation Bill Safety provisions that allocated $1.1 billion to Safe Routes to School nationwide and created the federal Safe Routes to School program and the Non-Motorized Transportation Pilot Program, which focused on four communities including Marin County. Of course there were many more elected officials and leaders who played key roles, and planners and engineers who built the projects.

What made all of that happen?

A lot of it was about tenacity and continuing to show up. Many people get frustrated when they’re trying to make social change happen and if it doesn’t take place within a year or two, they give up. With the MCBC, I went to all the community meetings and we showed elected officials why this makes a difference to everyday people in terms of quality of life. People want to live in places where their kids can walk and bike to school. It’s really a symbol of how healthy and safe your community is. Then, Al Gore came out with An Inconvenient Truth in 2006 and really woke people up to global warming. People in Marin realized they needed to get out of their cars and walk the walk.

What one bike infrastructure link has had the most impact?

The Cal Park Hill Tunnel is the biggest and most profound piece of infrastructure that’s been built in Marin to date. It connects San Rafael with the Larkspur Ferry Terminal. A bike trip that used to take 20 minutes now takes a little bit more than five minutes. It’s really a symbol of what’s possible.

What’s on your wish list now?

The Alto Tunnel has always been the piece of infrastructure that Marin County Bicycle Coalition members have said is most important to them. The Camino Alto grade is the biggest barrier for getting from southern Marin to central Marin.

What sort of impact are you seeing from Safe Routes to School?

When the program started in 2000, about 21 percent of kids walked or biked to school at the nine schools that were part of our federal pilot program. Now, Safe Routes to School is in more than 50 schools in Marin and there’s an average of 50 percent of kids that are taking a green way to school. There was a 2011 study that was done by the Transportation Authority in Marin that showed a 14 percent reduction in cars on average at all schools.

What’s the long-term impact?

Right now Safe Routes to School is in more than 15,000 schools nationwide. It’s safer for kids to walk and bike and safer for everybody because there’s new infrastructure. There are obvious health benefits. Active kids do better in school, so Safe Routes to School and activity out of school helps our kids learn and thrive. It’s changing the habits for an entire generation. Marin County was the national pilot for Safe Routes to School and we’ve influenced a profound movement nationwide.

It’s been 16 years since the MCBC was founded. What will it be like to bike in Marin in 16 years?

Every school will have routes to the school that are safe. We’ll have the North-South Greenway completed and we’ll be able to bike and walk on safe and separate facilities from the Golden Gate Bridge to Santa Rosa. The East-West Greenway will be completed from Fairfax to the SMART station in San Rafael. The Richmond-San Rafael Bridge will be opened for bikes on the upper deck. West Marin will be safe for bicycling. There’ll be less traffic, less greenhouse gas emissions and more joy. In a word, it will be biketopia.

Hop on a tandem bicycle with Rick at letters@pacificsun.com.

Life After Day +100

June 27, 2014 was the magic mark of 100 days after my bone marrow transplant! This means that I made it through the most difficult phase of healing from leukemia, but my doctor keeps reminding me to take it easy and go slow because I’m still building my new immune system so I’m still vulnerable.

I learned more about how sensitive I am last week when I had some very minor exposure to the sun.  I was always wearing sunscreen and clothing all over my body during three incidents, and just a little sun exposure was enough to create a mild case of skin graft versus host disease.

The initial exposure was when I got a little sun through the front seat of the car as a passenger. Second, I tried driving myself 10 minutes to San Anselmo and got some sun through the car window. Third, I attended and spoke at the ribbon cutting ceremony for a pathway in Tam Valley (about 20 minutes from my home), to honor the late Supervisor Charles McGlashan, one of my personal heroes and friends.  Despite carrying my SPF50 umbrella in a shady grove of trees, I still got a little too much sun.  So much for the experiments with going out in the day…

The rash quickly spread over most of my body – except my face and neck – so I called Stanford Hospital to find out what to do.  My doctor wanted me to be seen immediately, so on July 1, Andy and I trekked the 1-1/4 hour ride to Stanford with me in the back seat of his van, jumping from side to side to avoid the sun, and opening my sun umbrella on the way home to avoid the rays of the sun beaming into the car before dusk.

This mild case of graft versus host disease to the skin is being treated with a topical cortisone cream, and fortunately it’s getting better already. I was very glad that they did not prescribe prednisone, which has a host of negative side effects including further reducing the immune system, and swelling of the body due to fluid retention.

My nurse practitioner Tammy told me that through these trials and errors we’ve learned that sunscreen and clothing is not enough to protect me at this time. It’s really critical that I avoid the sun so that the rash doesn’t get worse, and so I don’t develop other more severe types of graft versus host disease.  She said — “enjoy your home” — so that’s what I’m trying to do. I can’t go out during the day unless I have a chauffeur with a clear back seat in their car.

Staying inside during the day is quite an adjustment for me – physically, mentally and emotionally. Stanford is recommending that I completely avoid sun exposure for the next nine months. Hopefully I won’t be as sensitive to the light once I reach the one year mark after my bone marrow transplant (which will be March 19, 2015).

So, in the meantime, I’ll be at home reading, writing, doing yoga, having healthy visitors, meditating, studying and hopefully learning to play keyboards.  I never thought I’d be looking forward to summer and daylight savings time ending (I used to love the sun), but now everything has changed.  As the days start to get shorter, that means more time I can spend outside at dusk and at night.

Despite this sun sensitivity issue, I am doing really well. I have more energy now than last month, my stomach issues seem to have resolved, my blood counts are good, and I’m sleeping better in my own bed than I was at the Stanford townhouse. I do miss my Mom a lot, but I love being able to see my partner Andy every day and it’s wonderful to be back in my own home.

When it comes down to it, it’s truly a miracle that I’m alive, and I’m endlessly grateful to be healing so well. I’ll make the best of being inside and I’m sure I’ll discover new things about myself.

Three Thumbs Up!

Three thumbs up-aI heard the absolutely best news ever on Wednesday, June 18 – which was exactly eight months after I was admitted to Kaiser Permanente to start chemo for acute myeloid leukemia.

My Stanford doctor, Robert Lowsky, MD, met with my Mom, Andy and I and relayed that my biopsy showed “NO trace of leukemia!” I don’t have words to describe how relieved I am. My blood counts have all been trending well since my bone marrow transplant in March, but I’m always nervous before I get the results from a biopsy.  I now will get quarterly biopsies, meet with my Stanford doctor once a month, and start appointments again with my Kaiser oncologist next week.

As a double bonus to the amazing clear biopsy news, my Mom, Andy and I drove from Stanford back to Fairfax right after the doctor appointment. After being away from home for 3½ months it was wonderful to drive down my street and walk into my house again. My friend and Reiki teacher, Christopher, who has been staying at my house, made signs that read “Welcome Home Deb,” and we all stayed up celebrating the fantastic news until midnight.

Triple bonus … my doctor said I was close enough to Day +100 and I was doing so well that I could begin a new phase in my recovery which includes not only living at home, but being able to go outside without my mask too!  This is thrilling and I took full advantage of it yesterday as I enjoyed the shade in my backyard, and attended a music jam event in the Fairfax Park at dusk. I am also allowed to go to yoga classes without my mask, as long as it’s not too crowded and I clean my mat well before each practice. I do still have to wear the mask when I go to any hospital or crowded location. I’ll also be back at sweat your prayers, the Sunday Open Floor dance in Sausalito, but I need to wear my mask, gloves and shoes.  My doctor won’t let me go to Ecstatic Dance in Oakland yet – unfortunately 300 people, even with a mask, is just too much risk of infection at this time.

Thank you for all the love and prayers! Each month I go without leukemia brings me closer toward being cured forever which is what I am envisioning and expecting. Onward in my healing toward the cure!

How My Life Was Saved – Nine Times

Deb with shawl from Linda croppedIt’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.

Leaving Stanford Hospital:  Andy, Deb, Mary Lou, Tara
Leaving Stanford Hosp: Andy, Deb, Mary Lou, Tara

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.

Deb and Dr. Robert Lowsky
Deb and Dr. Robert Lowsky, Stanford Hospital

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.

Stem Cell or Bone Marrow Transplant – what’s the difference?

Deb has started doing therapeutic yoga to help heal and strengthen herself
Deb has started doing therapeutic yoga to help heal and strengthen herself

Deb is doing well.  She is now Day +38 and her energy level is better.  She is not napping as much as she was in the beginning.  Her rash from the Graft vs Host Disease (GVHD) is almost gone, but she needs to continue to use the cream for another week.  We take our evening walks of 20 minutes and will try to increase that to 30 minutes.  She has started doing some gentle yoga for some exercise.  Deb had completed a month long therapeutic yoga teaching training program last summer, a couple of months before her leukemia diagnosis.  She now has an interest in how gentle yoga can help cancer patients.

A few days ago a friend of mine sent me an article by Jane Brody, a science and nutrition author, which appeared in the NY Times on April 21, 2014.  The article is titled “Lifesaving Procedure With an Image Problem,” and discusses stem cell vs bone marrow transplants.  The reason this is so important is that more donors are needed, and the new stem cell way of accomplishing a bone marrow transplant is much easier on the donor.  Most ‘bone marrow’ transplants done today are actually ‘stem cell’ transplants.  The main difference between the transplant methods is how the stem cells are obtained from the donor.  Stem cells originate in the bone marrow, and in a bone marrow transplant they are harvested directly from the bone marrow.  This is an invasive procedure for the donor involving general anesthesia.  However, stem cells can also be taken from the bloodstream in a procedure similar to donating blood.  The stem cells are collected from the donor’s blood after a week of injections to stimulate the production of stem cells.  The blood of the donor is circulated through an apheresis machine which separates the blood components and collects the stem cells.  The rest of the blood is returned to the donor.  This is a much easier procedure for the donor, and the patient recovers quicker too.  Click here to read the complete NY Times article.

I am still amazed and in awe at how this life-saving procedure is a global phenomenon.  Though Deb was registered in the United States with the Be The Match marrow registry, she received her stem cells from a 32 year old man from Europe (who we refer to as Mr. International).  Mr. International donated his stem cells on Monday, March 17.  They were placed in a medical transport cooler to maintain a specified temperature (they were not frozen), and were flown to Stanford Hospital by a courier, whose responsibility was to transport the stem cells from the collection center in Europe to the transplant center at Stanford.  The stem cells stay with the courier at all times, and are taken on the airplane as a carry-on.  The stem cells arrived at Stanford on Tuesday afternoon, March 18, and Deb received her transplant on Wednesday, March 19.  Truly miraculous!  Deb is extremely grateful to Mr. International for his generosity, and hopes to make contact with him when the mandatory one year waiting period has expired.

We encourage everyone between the ages of 18 and 60 to join bethematch.org.  It starts off with a simple cheek swab to obtain the potential donor’s tissue type.  If you are contacted as a possible match, then additional blood work is taken.  Joining does not commit you to anything; you always have the choice of whether or not to be a donor.  So think about it — many people are still waiting to find a suitable donor, and your tissue may just be the perfect match that will save someone’s life.

A little bump in the road

Happy Easter everyone!  It’s another lovely sunny day in Stanford.  Since we’ve been here, day after day has been beautiful and cloudless, one of the things that people love so much about California … unless, that is, you cannot be out in the sun.  Deb is now extremely sensitive to the sun, which can trigger Graft vs Host Disease (GVHD), a common complication of an allogeneic transplant.  GVHD develops when the donor’s immune cells regard the recipient (the host) as “foreign.”  The transplanted immune cells then attack the host’s body cells.  This often manifests as skin rashes and blisters, gastrointestinal problems, and jaundice.

The doctors encourage Deb to take walks, and we usually go out late in the day and walk for about 20 minutes.  On Wednesday we thought we’d try to take a couple of walks, and went out for our first walk in the late morning.  Deb was covered from head to toe with a hat, scarf, gloves, jacket and long pants.  She had on her big HEPA filter mask, so there was only a small part of her face that was exposed.  We mostly stayed in the shade, but there were some areas on the path that were in the sun.  That afternoon, Deb’s face started getting red, itchy and swollen.  She also got a rash on her neck, chest and back.  We went to the Cancer Clinic the next morning, and they said it was GVHD.  They told us it doesn’t take much sun to trigger GVHD, and once it starts, it can spread to areas that were not exposed to the sun.  This was quite a wake-up call for us; we knew Deb couldn’t spend much time in the sun, but we didn’t realize just how sensitive she is to it.  Deb was prescribed some steroid creams to use, and they have helped to improve the rash, but it is not all cleared up yet.  It’s been uncomfortable and itchy, and an unexpected blip when things seemed to be going so well.

The positive aspect to this is that they say a little GVHD can be good.  Here is a quote from the Be The Match website:  “Doctors often see mild GVHD as a good thing after an allogeneic transplant when the transplant was done for a blood cancer.  It is a sign that the donor’s immune system is working to destroy any remaining cancer cells.  Patients who experience some GVHD have a lower risk of the cancer returning after transplant than patients who do not develop GVHD.”  So we’ll try to look at this as a positive learning experience, but we’ll be taking all of our walks in the evening from now on!

What a difference a week makes!

This is Deb’s Mom again, Mary Lou, and I am happy to say that Deb is improving a little every day.  It’s truly amazing when I think of Deb’s anonymous donor, a 32 year old man from Europe, whose blood-making stem cells have replaced Deb’s and have given her another chance at life.  What a generous gift for him to have given!  Deb’s blood counts have been steadily rising.  Her white cell counts and platelets are now back in the normal range for the first time since she was diagnosed with AML in October, and her hemoglobin is not too far behind.  This is remarkable as her transplant was just four weeks ago, and she was still receiving blood transfusions less than two weeks ago.

Deb is slowly regaining some energy, but still has a lot of fatigue and needs to take frequent naps.  Just going to her outpatient appointments at the hospital is an exhausting process for her.  It takes about four hours, as they draw blood, take her vitals, wait for results, and then come back and discuss her progress with us, adjust medications as needed, and answer our questions.  It takes a long time for the body to recover from the intense treatment received prior to the transplant.  They say it will take about six months for Deb not to feel so tired all the time, and a year or more to recover to the point where she can resume most of her usual activities.  Deb, of course, hopes it will be faster than that!  We are taking short walks daily as gentle exercise is an important part of regaining strength.  Below is a link which discusses recovery in days 30 to 100.

http://bethematch.org/For-Patients-and-Families/Getting-a-transplant/Early-recovery–Days-30-100/

Thanks to all of you for your love and support to Deb and to me too, as her caregiver.  It helps a lot knowing so many people are taking this journey with us.

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