Living with Leukemia

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.

Revisiting the Hospital

One thing Deb really hoped to avoid was going back into the hospital.  For the past 7 weeks at home, Andy and I have done everything we could to keep that from happening.  We’ve made sure that Deb receives all her medications, nebulizers and oxygen as needed, gets daily exercise, and we tried to keep her comfortable, hydrated, and focused on eating and keeping her food down.  With the many complexities of Deb’s leukemia, this is not always so easy to do.  Her persistent cough often leads to a gag reflex which causes her food to come up, which in turn makes it difficult for her to put weight back on.  Her blood counts have been dropping at a faster rate recently, which means more trips to the hospital for transfusions.  While Deb was in the ER for her most recent platelet transfusion, they took a chest x-ray which showed an area suspicious of pneumonia.  Although Deb is on multiple oral antibiotics already, the best treatment for pneumonia is IV antibiotics, so she was re-admitted to Kaiser Permanente Hospital on Monday night so these could be administered.  She was also in need of a red cell transfusion which she received on Tuesday.

It’s possible that the donor cell infusion which Deb had on April 1 could be causing some of these issues.  It came with the risk of getting worse before getting better, including lower blood counts and greater chance of infection.  It’s a little sooner than we anticipated this to occur so it’s hard to tell what the cause is.  Deb has been running fevers for over a month now, and they persist.

Please join us in praying that Deb’s hospital stay will be short so she can return soon to the comfort of her home to continue her recovery.  Thanks for your continued love and support.

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.

No Longer in ICU

Deb was released from ICU last week and moved back up to her regular floor of the hospital.  The care in ICU was excellent, but it is comforting to be back where we know all the wonderful nurses so well.  At this time we are awaiting further testing.  I apologize for not getting this post out sooner.  Thanks for your many calls and messages with concern for how Deb is doing.

Mary Lou

ICU Update

It’s been a tough week for Deb — and Andy and me too.  Saturday morning Deb’s breathing tube was removed and she is completely off the ventilator and breathing on her own.  However she is still experiencing labored breathing and coughing, and remains in ICU.  Deb has considerable pain and discomfort from her breathing difficulties and is on medications to help ease the pain, but they also keep her somewhat sedated.  We are encouraged that Deb’s white blood counts and hemoglobin have been rising daily.  Her platelets are lagging behind, but they are usually the last to recover.  We will be closely watching Deb’s blood counts for continued recovery over the next week.

Thank you everyone for your continued prayers and love. The past week has been really difficult for all of us.

Mary Lou

Making Progress

Last night the doctor lowered the sedation level for Deb, and she became fully awake and alert and communicated with us by writing questions.  This morning they did a spontaneous breathing trial by turning the ventilator off and allowing Deb to breathe on her own.  She was able to breathe, but she still has wheezing and bronchial spasms and the doctor says it is too soon to remove the tube today.  They will likely do another trial tomorrow.

Andy and I were so happy to see Deb awake and clear.  Her first written question was “What Happened?”  She understands she is in ICU and has a breathing tube, and she agreed that she still needs the tube to assist her breathing.  They will continue to adjust her sedation levels during the day to give her awake time but also to ensure that she continues to get enough rest.

Deb, Andy and I thank you all for your prayers and concern.

Mary Lou

Deb Moved to ICU

Deb has been having difficulty breathing for some time, and edema (swelling) in her lower legs, feet and abdomen.  A CT scan of her chest was done yesterday afternoon looking for a cause for her breathing difficulty, and the results were negative.  After the CT scan, Deb was unresponsive and her breathing extremely weak.  The nurses immediately activated the Code Blue emergency response team and they arrived in seconds.  They were unable to improve her breathing to a satisfactory level, and Deb was placed on a ventilator (breathing machine).

Deb was moved to ICU and is still on the ventilator and resting peacefully and sleeping deeply for the first time in weeks. She is being kept sedated so she will not feel the discomfort from the ventilator tube and to give her rest.  The good news is that Deb is responsive; she never stopped breathing.  When Andy and I speak to her she opens her eyes, turns her head and looks at us.  She is unable to talk because of the tube in her mouth.  On Thursday morning the doctor plans to do a spontaneous breathing trial to determine if Deb is able to breathe on her own and have the ventilator removed.

The doctors are encouraged by Deb’s responsiveness and we expect this to be a temporary situation.  As always, please keep your love and prayers for Deb coming her way.

Challenging Times

Deb’s chemo treatments were from Jan. 7-11.  The side effects set in the second week, and she continues to deal with other challenging issues – breathing difficulties, coughing, fever, and low blood counts with frequent platelet and red cell transfusions.  The off and on fever indicates an infection, but it has been hard for the doctors to determine where the infection is, despite X-rays, CT scan, MRI, blood cultures and more.  Deb is taking many antibiotics and other meds to help treat any infection that may be there.

Deb is fatigued from the frequent coughing and breathing difficulties which make it hard for her to get much sleep –and add to that the constant hospital interruptions, and she is quite exhausted.  It’s hard for me to see my vibrant energetic Deb with so little energy.

On the positive side, Deb’s white blood counts went from zero (where they had been for several days) up to 0.1.  It may not sound like much, but it’s a step in the right direction.  As Deb’s counts continue to rise over the next couple of weeks, it will boost her immune system, her body will get more energy, and she will be able to better fight any infection that may be there.

Thanks as always for all your prayers, concern, cards and messages.  Deb is not able to respond to you at this time but please know that everything is very much appreciated.

Mary Lou

The Next Steps

As you know, Deb has been in Kaiser Permanente Terra Linda hospital recovering from respiratory problems – wheezing, difficulty breathing, and coughing.  She has had three chest x-rays and two CT scans.  The most recent CT scan showed a sinus infection, which is exacerbated by her compromised immune system.  Deb had been on oxygen around the clock, but over the past few days her lungs have cleared some, her breathing is better, she is coughing less and not requiring much oxygen.  The doctors had been waiting for some improvement in Deb’s condition to start her chemo for relapsed acute myeloid leukemia (AML).  On Wednesday, January 7, Deb will begin to receive the MEC combination chemotherapy which consists of three separate drugs given through an IV infusion for three to four hours a day for five days.  This is a tough chemo regimen which Deb received last year as her second round of chemotherapy.  Deb will need to remain in the hospital for four to six weeks following the chemo to regain her strength and build up her blood counts and immunity.  We don’t know at this time if Deb will need one or two rounds of chemotherapy.

On the emotional side, Deb is facing a completely different level of difficulty than when the leukemia was newly diagnosed.  The psychological stress of dealing with this new level of reality is very difficult for her.  Throughout the last 15 months, Deb has remained extremely positive and is trying to keep up a positive spirit now.  But this is hard for her to do with the prognosis she has received.

Deb and Andy were married in a lovely intimate ceremony on December 28, but unable to have a honeymoon celebration at this time.  Andy came to the hospital faithfully to visit Deb every day until he got sick last Saturday.  It’s particularly challenging for Deb now (and Andy too) because Andy has the flu and she is not able to see him because of possible exposure to infection.  Andy is a huge comfort to Deb, and not being able to be with him at this time is very hard for her.

We are praying that this chemo treatment will put Deb’s leukemia back in remission.  We are also continually looking at possible clinical trials for new drugs that may attack the leukemia in a different way than the conventional drugs.  These new drugs fall into the category of immune therapy.  Instead of targeting the leukemia cells the way chemotherapy does, they work by harnessing the immune system to attack the cancer cells.  One drug, called a PD-1 Inhibitor, has received promising results for lung cancer, melanoma and lymphoma.  There have not yet been any PD-1 Inhibitor clinical trials for AML, but we hope there will be one in the near future that Deb can participate in.

Many people mention clinical trials to us, and we always appreciate learning about a treatment which may be beneficial to Deb.  But finding an appropriate trial can be difficult.  One thing I have learned when researching the trials is to look first at the Exclusion Criteria.  Some trials will exclude relapsed leukemia or patients who have had a stem cell transplant.  Other exclusions include specific gene and chromosomal characteristics which the patient may need to possess or not possess.  The trial must specifically be for acute myeloid leukemia, not one of the other types of leukemia.  Also, the patient must be relatively healthy to enter a trial, so we need Deb to get well and recover her strength back after this chemo treatment.

As always, we appreciate all of your prayers, love, healing intentions for Deb, and messages.  Deb is sorry that she cannot reply to each of you individually, but your healing thoughts and prayers really help a lot.

Mary Lou, Deb’s Mom

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.

A Prayer for Healing – Biopsy Results

Dear Friends,

Little Debbie, 6 years old -- Embracing my inner child.
Little Debbie, 6 years old — Embracing my inner child.

As you know we’ve been waiting for news on my bone marrow biopsy which was done twice because of inconclusive test results. Unfortunately, on Tuesday the Stanford doctor told me he is 99.5% sure that my condition is recurrent leukemia.  This is definitely the worst diagnosis for my situation, and was not the news that I wanted to hear. I was hoping (and still am) that the bone marrow transplant was my cure.  I’m not giving up.

My doctor says that there is currently a fight going on in my bone marrow between the leukemia and my donor’s cells.  My soul is burning and asking me to join this fight for my survival because I so deeply love this life.  While my donor cells fight the leukemia and while my fighting spirit is strong, I am reminded of the need to commit again and again to cultivating love and letting go of fear, which visits often. While I fight for my life, my intention is also to surrender: to live each moment as it comes and not worry about what has taken place in the past or what may happen in the future.  I believe that I can both surrender to the Divine, and fight for my life at the same time. This strong will to live comes from my heart, which honestly is aching.

There is a 5 percent chance that I could have a miraculous healing over the next 5 weeks where my bone marrow will succeed in fighting back and killing the immature cells which the doctors think is leukemia. This is my hope and prayer – that my body naturally rallies and overcomes the cancer this month.  This means that my bone marrow will be making all healthy blood cells – white cells, red cells and platelets — in all of the correct proportions, and there will not be immature cells or blasts. Currently, I am having blood transfusions regularly because my bone marrow is not making enough of these healthy cells.

I believe in love, and the power of intention. With my love and all of those around me, it is my hope that we can smother the cancer and say goodbye to it forever.

I have another biopsy scheduled for January 7, and if that one looks like leukemia, I will be re-admitted to Kaiser Permanente in San Rafael again to undergo chemotherapy while I live in the oncology unit.  There would be two rounds of chemo, each requiring about a 5-6 week stay in the hospital. The chemo is hard to handle, and I hope that I don’t have to go this route, but I will if I need to.

I thought I was cured of AML, so this news is very surprising. Over the past month as my blood counts dropped and I got sick again the doctors kept saying that they thought it was graft rejection (easier to cure), and not leukemia.  In the face of this challenge, I am working hard to keep a positive attitude and envision myself having a long healthy life with my partner Andy, and enjoying my friends and family. I am doing some deep spiritual work to meditate, do Reiki, and clear any issues that are holding me back.  I’m working to commune with and heal my inner child, “little Debbie,” whose picture I have included with this blog.

I have overcome many challenges in the past and plan to do so with this one too!  When I was 17 and had reconstructive knee surgery my doctor said I would never do gymnastics again, but I was doing back flips within the year. When I injured my other knee skiing 5 years ago, the doctor said I could not be healed without surgery, but an MRI six months later proved that I had healed my ACL with meditation and Reiki.  There have also been many political situations where people said what I wanted “could not be done,” but I made it happen (with help from others), like building the Cal Park Hill Tunnel, forming the Safe Routes to School National Partnership, and securing the Nonmotorized Transportation Pilot Program federal legislation which provided key outcomes nationally for why investments in walking and bicycling improve health, reduce greenhouse gas emissions and improve safety.

If it feels right to you, please continue to hold me in a healing light and I gladly accept and am grateful for prayers for my full recovery, as quickly as possible.  Please envision me fully healthy, happy and vibrant, with my bone marrow and body healing naturally over the next month – so that I am cancer free forever.

I have much more to give and to live in this life, and deeply hope to have that opportunity.  Thank you for your love and being my ally.

Love always,
Deb

A Setback

Hi everyone, this is Mary Lou, Deb’s Mom.  Deb had been recovering well from her stem cell transplant (March 19), with only minor issues over the past few months.  By September she felt like she was getting more energy back.  Then about three weeks ago she suddenly started feeling very tired again.  Blood work showed that her blood counts had dropped significantly in a short time period.  Both the Stanford and Kaiser doctors were concerned and asked for repeat blood tests. With each test, the blood levels went lower, and Thursday her hemoglobin reached a level where a red blood cell transfusion was needed.  Deb was admitted to the hospital Thursday night (November 13) and received the transfusion yesterday.  She will remain in the hospital over the weekend as a platelet transfusion may be required.  She was also running a low grade fever which spiked last night, and then went down, so they have added a broad spectrum antibiotic to her IV schedule and are watching her closely for signs of infection, which can be particularly dangerous when blood counts are low.

A bone marrow biopsy is the only way to determine what is causing the blood counts to drop, and that procedure was done last Wednesday.  Unfortunately we will not get the results until Monday, so we have a long weekend to wait to know the outcome and what the plan will be going forward.  We are praying that it is not a return of the leukemia.  There are also other conditions that can cause the blood counts to fall, such as “primitive” donor cells, which are not stem cells, dying off, which can then appear as a drop.

Ironically, a couple of months ago I had planned a trip to CA for my first visit with Deb since returning home after we left Stanford in June.  I arrived in CA last week, and while it didn’t turn out to be the fun visit we had hoped for, I am glad that I am here to be with her through this.

Thank you everyone for your support and prayers which mean so much to us.

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!

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.

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!

Milestone Day — Bone marrow biopsy and catheter removal!

Deb and Tammy, her nurse practitioner
Deb and Tammy, her nurse practitioner

I must say that my daughter Deb is a very brave gal.  I was queasy just watching her procedures yesterday, but she handled everything amazingly well.  Even with morphine, ativan and lidocaine, there was still pain.  Luckily Deb has a great nurse practitioner, Tammy, who has done many of these procedures and is a pro.  Now we are praying for clean biopsy results.

First was the bone marrow biopsy and aspiration.  Bone marrow has a fluid portion and a more solid portion.  In bone marrow aspiration, a needle is used to withdraw a sample of the fluid portion from the bone.  This is spread on glass slides and examined under a microscope for quick results, but does not represent all cells.  In the bone marrow biopsy, a thicker hollow needle is used to suction out a sample of the solid part into the hollow middle of the needle (it looks like a core sample that might come out of a tree, and is about an inch long).  This provides cell constitution and represents all cells, but takes a longer time to process.  This was Deb’s seventh bone marrow biopsy, and less painful this time than the other times (thanks Tammy!).  The biopsy and aspiration was done on the left side of Deb’s hip.

Deb’s Hickman double lumen catheter after removal.  The curved portion (from a little above Tammy’s hand) was under Deb’s skin with the tip inserted into a vein.
Deb’s Hickman double lumen catheter after removal. The curved portion (from a little above Tammy’s hand) was under Deb’s skin with the tip inserted into a vein.

The catheter removal was actually the tougher procedure.  The catheter had been inserted in the right side of Deb’s chest three months ago, and secured by means of a “cuff” just under the skin at the exit site.  This cuff is used to anchor the catheter under the skin so there is less danger of the catheter slipping out.  The cuff also blocks bacteria so it doesn’t enter the bloodstream.  The body’s surrounding tissue grows into the cuff, securing it even more.  So in the three months’ time that Deb had her catheter, it kind of became part of her body.  This tissue had to be cut away from the cuff before the catheter line could be pulled.  Tammy used a scalpel and scissors to cut the tissue away, very carefully of course!  Once all the tissue was severed from the cuff, the line came out very easily.  This procedure took about 25 minutes, and even with the anesthetic there was some discomfort for Deb.

What does it mean for Deb, now that the catheter is removed?  Well, for starters, she can shower without me having to cover the catheter with a plastic bag and tape to prevent it from getting wet.  It also means we have no more daily line flushing with heparin, valve changes, and weekly dressing changes.  Such freedom!  On the downside, from now on Deb will need to have a needle inserted into her vein each time her blood is drawn for testing, which will be done on an ongoing basis for quite some time.  The catheter made it easy and painless to receive meds and have blood drawn.

Next Wednesday, June 18, is Deb’s appointment with Dr. Lowsky, her bone marrow transplant doctor.  We should receive the preliminary results of the bone marrow biopsy at that time.  Dr. Lowsky will let Deb know how often she needs to come back to Stanford for follow-up appointments, and how she needs to reintegrate with the Kaiser Permanente oncology department in San Rafael.  That night after the Dr. Lowsky appointment, we head back to Deb’s home in Marin County!  Yeah!!!

Thanks to all of you for your continued prayers and support for Deb throughout this long journey.  It will still be an on-going journey for some time, but she’ll be moving into a new and hopefully better phase, to continue her healing and start to regain her strength and energy back.

Going Home Soon!

Good news! The plan is that I’m moving home soon!

I left Marin on March 9 to come to Stanford Hospital to have my bone marrow transplant (BMT) and to be cured of AML forever. I was discharged on April 8, and my Mom and I have been living in a very nice townhouse on the Stanford campus since that time. Because I’m doing so well healing, we recently got the green light that I’m ready to live at home again!  The moving date is planned for June 18 which is +91 days since my BMT.

There are a few important things that have to happen before I go home though. On Wednesday, June 11, I will have a bone marrow biopsy (to ensure that there is no cancer left in my system), and that same day I will have my central catheter removed.  My Mom and I will be at the infusion treatment area (ITA) at the hospital for most of the day.  It will be my seventh bone marrow biopsy since last October, and the first without my boyfriend Andy holding my hand — but my Mom will support me!  Bone marrow biopsies are never fun, and have usually been quite painful for me – so I’ve asked for pain killers this time…

The catheter was inserted into my chest three months ago.  During the month I was in the hospital, it was used to deliver chemotherapy, blood transfusions, antibiotics, IV food and hydration, and the stem cells from my anonymous donor.  The catheter has also been used twice a week since I left the hospital at the ITA to draw blood for the complete blood count (CBC) which measures my levels of white cells (fight infections), red cells (carry oxygen), and platelets (form blood clots).  The doctors and nurses are pleased with my blood counts, which are all slightly below a “normal” person’s levels, but they say my counts are “normal” for a BMT patient at this time in my healing process.

I have an appointment with my bone marrow transplant doctor at Stanford Hospital, Dr. Robert Lowsky, on June 18, and afterwards, Andy, Mom and I plan to hit the road back to Marin County.  I will learn the preliminary results of my bone marrow biopsy at that appointment and am anticipating and praying that it will be cancer free, now and forever!  If you’d like to support my healing by envisioning a clean bone marrow biopsy with only healthy cells, I would greatly appreciate your support. I intuitively have felt since the BMT that the leukemia is gone, but it will feel really good to have the biopsy results to confirm that hunch.

June 27 marks the magic Day +100 when I can start to go outside in public without my mask.  I’m thrilled to be approaching day 100, as the first 100 days are the most critical for BMT patients.  It’s a landmark to be post day 100!  However, I will remain at increased risk for developing infections and the post-transplant illness called graft vs host disease, and will still be taking numerous medications, so the healing and doctor appointments will continue.  I’ll be seeing both my Stanford and Kaiser Permanente doctors for some time after I move back home, and bone marrow biopsies will be scheduled for every 3 months.

The only sad thing coming up is that my Mom will be flying home to Pennsylvania soon after we return to Marin.  She’s my amazing caregiver, Mom and friend, and I will miss her, our evening walks, night-time movies, cooking and companionship.

Celebrating my “45 and Stayin’ Alive” birthday!  (No, my hair hasn’t grown back yet, I’m wearing one of my wigs).
Celebrating my “45 and Stayin’ Alive” birthday! (No, my hair hasn’t grown back yet, I’m wearing one of my wigs).

Throughout this entire process, I continue to be so grateful for everyone’s love and support, and for the skill of the doctors and nurses who have been treating me. So many people are still sending prayers and good energy – thank you! This is very helpful. I definitely have a lot more healing to do to strengthen my new immune system, and increase my blood counts and energy.

I recently had a birthday, and my motto is, “45 and Stayin’ Alive!”  Does that make you want to start dancing to the 70’s Bee Gees’ song?  “Ah, ha, ha, ha stayin’ alive, stayin’ alive…!”  Hope to see you on a dance floor soon.

BENEFIT TO HELP DEB HUBSMITH HEAL FROM LEUKEMIA FRIDAY, MAY 16, 8 pm – 2 am 15 Bands, 3 Venues, one price of $20: DOWNTOWN FAIRFAX

FlyerPage2Event-WebsiteHIGHREZDear Friends,

Being diagnosed with acute myeloid leukemia last fall was a huge shock. I never thought I’d get cancer. But there I was, on October 17, facing down a serious blood cancer diagnosis.

Soon, the reality set in that I would have to put my career completely on hold, lose my hair, and live in isolation in hospitals for many months, going through risky and life threatening treatments including many rounds of chemotherapy and a bone marrow transplant.

In addition to the physical and emotional stress of having cancer, one of my real life fears was finances.  I have always worked for non-profit organizations and don’t have a huge savings. Plus there are costs associated with my treatment that are not covered by health insurance. Also, because I am on medical leave from my job, at least until January 2015, work is no longer covering my health insurance payments.  Money issues were heavily weighing on my mind, and I didn’t know what to do. All I knew was that my first priority was putting all of the energy I had into simply staying alive.

Fortunately, my amazing and beautiful friend Tara Coyote had a fabulous solution, and she had the creativity, know-how, persistence and will power to put it into action.  Tara organized a way for people to donate to me on-line through YouCaring: http://www.youcaring.com/medical-fundraiser/love-healing-deb-/143995, and then she offered to put together a multi-venue fundraising concert where the proceeds from ticket sales will benefit my medical expenses.  Thank you Tara!  The benefit event is now coming up this Friday, May 16 from 8 PM – 2 AM in downtown Fairfax!  Bay Area people — Don’t miss it!  This event is going to rock.

MUSIC FUNDRAISER:  Check this out! There will be 15 bands playing at three venues in downtown Fairfax this Friday — 19 Broadway, The Sleeping Lady and Peri’s. The event goes from 8 PM to 2 AM and the entrance price for all three venues is $20 (you’ll get a wrist band so you can come and go as you please). What a deal for some truly diverse music! For info about the event and to see the full line-up please see the Facebook event listing at: https://www.facebook.com/events/278400739001855/ or scroll to the end of this message. A big thank you to the bar owners and managers for providing the space for us to host this event: 19 Broadway (Jonathan Korty), Sleeping Lady (Tera Ferguson), and Peri’s (Chuck Peri).  Kudos to Tara and her partner Tom Finch who booked many of the bands, as did Jonathan and Tera.  Many thanks to all of the musicians in the 15 bands who will be playing too – they are all donating their time!

SILENT AUCTION: After the fundraiser was publicized, my dear friend Lindsay Wood decided to create a thoroughly amazing online silent auction site where you can bid online and donate, and she enlisted the support of my colleague and friend Wendi Kallins to help.  There are bodywork sessions, gift certificates towards restaurants, dance, qigong, Gyrotonic, personal training and yoga sessions, store certificates, whale watching trip, drum classes, portrait sittings, doula training workshops and more! Please check it out and bid if you are inspired at: http://www.32auctions.com/lovehealingdeb  Also, you don’t have to live in Marin to bid!  Thank you to everyone who has donated to the silent auction, the people who are volunteering to staff it that night, and everyone who is bidding on items (the bidding closes at 11 PM on Friday; the auction will be set up outside at the Sleeping Lady).

I also want to provide a huge heartfelt thanks to my loving partner Andy Peri for all of his support working with the bars on the details, designing the poster and postcard for the event, and providing all-out emotional support to me as I continue to navigate this healing journey.

And when you stop by Peri’s, you’ll see something you haven’t seen before – Amity Hotchkiss is organizing an altar inside the bar which will include sacred objects representing all of our connection to the Earth.  So stop by the altar and say a blessing for all of our health, and the health of our precious planet.

Thank you to everyone who has helped with this benefit in any way, all who are going to attend (it’s going to be so fun!), and to the nearly 200 people who have donated already to help with my expenses healing from AML.  If you want to support my healing, but can’t make the benefit, you can donate on-line through: http://www.youcaring.com/medical-fundraiser/love-healing-deb-/143995

We’re still working to spread the word about this fabulous event.  You can help by sending an email or Facebook post to your friends.  Plus, word of mouth is still the best publicity – let people know if you’re coming!  Thank you!

I am so deeply touched by the huge outpouring of support for my healing, and how many people are working together to make this benefit a success. Also, all of your cards, Facebook messages, texts, emails and donations are so hugely appreciated.  Through this unexpected journey I am really opening up to the tremendous love and generosity that exists in the world, and I am grateful to be feeling it so strongly. Love heals!  Truly.

All my best,
Deb

Band line-up:

19 Broadway
8-8:45  Tommy Odetto
9-9:45  Big Brother
10-10:45  Vinyl
11-11:45  Talley Up!
12-12:45  Tom Finch Group
1-1:45  The Unnamed

Sleeping Lady
8:00-8:45  The Sleeping Ladies’ Men
8:55-9:15  Samantha Raven
9:30-10:00  Tracy Blackman & Friends
10:15-11:00  FenToN CooLfooT & Friends
11:15-Close  Junk Parlor

Peri’s
8:30-9:15  Setchko & Meese
9:30-10:15  MAML
10:30-11:15  Ronnie Ray & Friends
11:30-Close  Achille’s Wheel

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