West Coast Celebration of Life for Deb

Dear Friends,

Below is a reminder regarding Deb Hubsmith’s Celebration of Life Party on Saturday October 10, at 6:00 PM at the Mill Valley Community Center, 180 Camino Alto, Mill Valley, California.

Please join us; this party is Deb’s gift back to the community which she loved so deeply.  This event is for Deb’s family,  friends, colleagues and her wider community. Feel free to share this with friends that are connected to Deb.

Event Details:
Together we will celebrate our beloved Deb’s life, which will include videos, slide shows, story sharing, songs, a live band (Valley Allstars) and DJ’d music (Hamid Martin) until midnight. Please come in comfortable casual/dance clothing and be ready to dance; Deb specifically asked that all of us dance at her Celebration of Life!

Food:
This will be an organic vegetarian potluck. Please bring your favorite dish (appetizers, main course, desserts, drinks, etc.). Please label your food with ingredients (indicate if it is vegan or gluten-free) and put your name on your dishes/serving utensils, etc. as there will be LOTS of potluck dishes and we want you to go home with your plates, etc. If you are coming in from out of town, there are two Whole Foods stores in Mill Valley where you can purchase organic vegetarian food or drinks for your potluck contribution.

Green Event:
This is a green event. To honor Deb’s love for this precious planet by reducing waste, please bring your own plate, utensils and drinking cup (if you cannot, don’t worry, we’ll have you covered); thank you for putting extra energy into stepping lightly on this Earth!

Also please carpool or ride your bike to the event; parking may be limited. Remember to have lights on your bike if you ride as Deb’s Celebration ends well after dark.

Updates/Contact:
Please continue to check the Facebook event page at https://www.facebook.com/events/1475205916140229/ or www.lovehealingdeb.com as the date approaches for changes. For questions about the event, email Andy at anandamudita@gmail.com or call 415.457.2434.

We are looking forward to celebrating our beloved Deb’s life together!!!

Arrangements

Family, colleagues and friends are invited to attend funeral services for Deb, which will be held at Limantour Beach in West Marin on Friday, August 28 at 10 AM.  Please carpool (or ride your bike) and park in the main parking lot; head left on the beach.

A Celebration of Life for family, friends and the wider community is planned for Saturday, October 10 at the Mill Valley Community Center.  We will celebrate Deb’s life with music, multimedia, story sharing and lots of dancing.  This event will be Deb’s thanks to you for your love, prayers and the actions you take to make the world a better place.  More details will be forthcoming on lovehealingdeb.com.

In lieu of flowers, gifts can be made in Deb’s name to the Safe Routes to School National Partnership (saferoutespartnership.org/donate); or the Leukemia and Lymphoma Society (https://donate.lls.org/lls/donate).

Obituary
http://www.legacy.com/obituaries/marinij/obituary.aspx?n=deborah-ann-hubsmith&pid=175556964

Tribute to Deb
http://www.marinij.com/obituaries/20150819/deb-hubsmith-force-in-marin-national-bicycle-movement-dies

 

Home Hospice

Deb has asked me to share this with you.  Sweet friends – after nearly 2 years of struggling with acute myeloid leukemia cancer, I am going on Home Hospice. This brings me peace, relief, and I feel the love even deeper.  Thank you all! The best way to support me now is ease and flow to the Great Spirit home. Namaste. Mahalo. Trust.

From Mary Lou:  I am so blessed and proud to have Deb, my beautiful, loving daughter, who has enriched my life in so many ways and given me so much joy.  I know from the many messages of praise and love for Deb that we receive that she has played a big role in the lives of countless people, and been an inspiration for many to follow their dreams.  Through my sadness I rejoice in Deb’s beautiful life which has been a gift to me.  Deb has battled her leukemia long and hard, and now has arrived at a feeling of peace.  I marvel at how she has handled her illness from the initial shock of the diagnosis, through the many ups and downs, and the difficult treatments and lengthy hospitalizations.  Deb has fought with intensity and given it her all, just as she has approached everything in her life.

We thank our friend and Spirit Rock teacher Debra Chamberlin Taylor, who has been a wonderful support to Deb, Andy and me over the past couple of months in guiding us through this process of transition. We thank our families and friends for the love and support you have provided, and are grateful to Deb’s closest friends for your devotion to Deb, being here so much to provide moral support, assistance, healing, and lots of love.

Thank you for keeping Deb in your prayers.
With love and gratitude,
Mary Lou

Acceptance

I am still open to a miracle cure, but over the past few weeks I have finally come to acceptance that due to my severe health condition starting with leukemia 21 months ago, I may not have much time left on the Earth plane. This acceptance comes with deep sadness but also some relief, accepting reality as my body declines. Everyone will die someday.  I feel very vulnerable and also connected to source. I feel that I’m being guided.

I am so grateful for all of your love and prayers. Acceptance is the key to alleviating suffering. In the meantime I spend my time in bed and at hospitals. I try to be grateful for the wonderful life I’ve had, and small blessings like how the leaves dance on the trees outside my window and how Andy looks into my eyes and assures me we will always be connected.   Namaste.

Deb

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.

Back Home from the Hospital

Compared to most of Deb’s hospital stays, this was a short one … but any number of days in the hospital is more than we want.  Deb was released on Saturday after her latest chest x-ray came back clear.  She is on a couple of new strong antibiotics along with her other medications.  She is having continued difficulties with her asthma and breathing.  Deb’s blood transfusions are required more frequently now.  This may be a result of the donor infusion and is expected to continue for a few weeks before the counts begin to rise again.  In the meantime, Deb is trying to gain back some strength and energy.

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.

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.

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

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

More Tests Needed

My bone marrow biopsy information came back today, and unfortunately the results were “inconclusive,” so the sample now is going to Stanford for further study, and I need to get additional tests and another biopsy at Stanford next week.  While the results were inconclusive, we did get a lot of information:

1)  The doctors still hope (and there are signs) that there is no leukemia (this reinforces previous tests).  We keep praying for no recurrent leukemia.

2)  There are indications that my donor cells from Mr. International are not producing the amount of healthy blood cells that are needed, which is likely why my counts have dropped.  This can happen in about 4% of bone marrow transplant patients.

3)  If it’s confirmed that I don’t have leukemia, treatments could range from relatively simple outpatient procedures to something more aggressive which would require more stem cells from Mr. International, and I might have to live in the Stanford area again for a few months during treatment and recovery

4)  Currently I am getting injections of a drug called Neupogen that increases white blood cell production, and in some cases this solves the sluggish blood production problem entirely. This is my biggest hope and prayer right now!

5)  If I’m lucky, I can leave the hospital by the end of the week, and then be recovering more fully at home while the doctors finish the diagnosis and plan a treatment.

You can help me by seeing me as fully healthy, and going through this process as quickly, easily and effectively as possible – so I really am fully cured.

When my blood counts first dropped two weeks ago, I was in complete disbelief, as I thought I was already cured.  It has been very difficult for me emotionally and physically to have this setback, and I have been doing a lot of soul searching, and facing death.  In my dream this morning, a light came to me, and I knew that I had to keep going with treatment, stay positive and do everything I can to be cured – no matter what.

Your love, light, thoughts and prayers really help.  Thank you for helping me to stay strong in light of this challenge.

Live video recording of my song “Deeper Inside”

Here’s a “home grown” live video recording of my song “Deeper Inside,” which is about my “come back” from being diagnosed with leukemia last Fall. Special thanks to Anny Owen Densmore who masterfully put the lyrics to music and encouraged me to write and perform the song as a form of therapy. In the video, Anny is accompanying me on vocals and keyboards, Bob Densmore is on bass, and Mika Scott is on drums. Kudos to Andy Peri for shooting and posting the video, and for all of his inspiration and love! Go team! http://www.youtube.com/watch?v=-cjM3L0oFGE&feature=youtu.be

Deeper Inside- Deb’s come-back after healing from leukemia w/ Deb, Anny, Bob and Mika-
YOUTUBE.COM

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!

Reflections as I Step Down as Director of the Safe Routes to School National Partnership

Throughout my entire life I’ve always wanted to make a difference in the world. I found my niche in the late 1990s with Safe Routes to School and never looked back.

Good ideas have a way of catching on, which is exactly what happened with Safe Routes. It became my passion and goal to be a leader in creating a strong Safe Routes to School movement throughout the United States that would contribute significantly toward building a healthy future for children and the environment. I’m so pleased that the Safe Routes to School National Partnership, which I founded in 2005, now includes 700 partners, and more than 15,000 schools nationwide are benefitting from Safe Routes to School programs.

I had planned to continue leading this organization, but sometimes life provides big surprises.  On October 17, 2013, I received a call from my doctor – it was the type of call no one ever wants to receive. She said, “You have acute leukemia and need to be admitted to the hospital immediately.” I was shocked but there was no time to process; I knew I had to take action to save my life, with the same passion and vigor that I used to build the Safe Routes to School movement. I immediately called my senior staff and Board members with my diagnosis. They were very compassionate and supportive, and reassured me that everything would be OK with the National Partnership. They urged me to focus on my health, and I did.

To stop the cancer I went through four rounds of chemotherapy, a bone marrow transplant, and spent nearly six months in hospitals. Thank you so much to everyone who sent cards, support and prayers during that critical time; it helped keep my spirits up and focused on healing. The really good news is that the treatment worked! My recent biopsy showed no trace of leukemia and my blood counts are all in the normal range. I am absolutely thrilled with this progress, but still have more healing to do. My doctors have advised that for the next year or so I should only work part-time and limit my travel.

This was hard news to receive, as I knew it meant that I could not return as the Director of the Safe Routes to School National Partnership, a position that requires extremely high energy, long hours and a lot of travel. Therefore, to do what is best for both my health and the future of the organization, I have decided to step down as our Director.

But while my position is changing, I’m not going away! I’m pleased that I will remain on our Board of Directors and that I will also serve as a strategic advisor to the National Partnership starting in 2015, consulting on our policy and strategy nationwide and in California, as well as assisting with onboarding the new Executive Director. I will also be taking on consulting contracts with a few other organizations, while keeping my hours to part-time.

I have full confidence in the staff and board of the Safe Routes to School National Partnership and in our transition plan. I want to express deep gratitude to Risa Wilkerson, Chair of our Board, and Margo Pedroso, our Deputy Director, who bore a huge brunt of work along with the rest of the staff while I have been healing. I look forward to working with the rest of our Board to find a stellar new Executive Director who will help continue the success of our organization.

People often ask me, “What’s your message and how has it changed?” Before I got sick it was always that each person truly does have a unique power to make a difference in their world. Now that I’ve recovered from cancer, I add that to be most effective, we should infuse our advocacy campaigns with compassion and understanding, while cherishing both our personal and professional relationships.

I’m pleased to be standing together with the National Partnership and other kindred souls to build a better future for children and the nation. Thank you for continuing to support the Safe Routes mission. We’ve made wonderful progress as a movement, and have great things ahead. Together, we make a huge difference.

All my best,
Deb Hubsmith

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