On September 27, I was asked to give the keynote talk at the Relay For Life in Friday Harbor. Here is the talk:

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Can I take 10 minutes to tell you the story of becoming one year cancer free?

Like all of us, I never thought cancer could or would happen to me. I was a green smoothie drinking, vitamin taking, daily walking Nature Lover with good friends and a close family. I hardly ever got sick. Three months before I came down with cancer, my husband and I went to the bottom of the Grand Canyon and back the next day, barely breaking a sweat. We had big plans in motion to go hike the Inca Trail to Machu Pichu in Peru. Looking out at the audience now, I am sure many of you know this scenario—your life before cancer and then, how that world falls away with the Diagnosis.

In February of 2013, I suddenly just didn’t feel up to the two hour walks I’d been taking. Overnight, I’d lost my usually hearty appetite. I felt glued to the couch. I was lucky that my local doctor knew me as a normally active woman or we could have wasted precious months on the initial testing. Fortunately that planned trip to South America spurred both of us into a determined focus to get to the bottom of my fatigue and malaise. He began with the less terrifying possibilities like mononucleosis and kept testing until he arrived at an inescapable and most inconvenient truth. I had a blood cancer. He sent the sample to the University of Washington to be sure. The verdict came back without stopping to find out if it was something we wanted to hear. I had Acute Lymphoblastic Leukemia. Acute means that without intervention, this disease had the potential to kill me within a month.

 

I was off the island and into the UW Hospital within two days of that finding. A PA who first examined me stated without irony—“It’s a tough disease. But this is a good time to have leukemia”. I remember that comment was somehow so encouraging though I had no idea what he meant. Soon after, I began finding out — when I immediately benefited from the life-enhancing work of Dr Robert Hickman.

Dr. Hickman worked at the Seattle Cancer Care Alliance in the 1970s, where he was a member of the Hutchinson Center’s transplant team. At the time, intravenous nutrition, blood draws and delivery of chemotherapy were difficult challenges for his patients. Dr. Hickman developed a technique to tunnel a central line under the skin and into a large vein nearby. If you’ve ever had blood taken numerous times, you can imagine how remarkable this would be to a patient who previously only had the choice of multiple sticks from a needle. Talk about improving quality of life!

I wore my Hickman line for nearly a year, receiving six hospital rounds of the hard ball players of chemotherapy, as well pre and post-transplant chemo. I also received seemingly countless blood transfusions, anti-nausea medicines, antibiotics, essential nutrients, blood clotting agents, Vitamin K, platelets and even water when I couldn’t keep anything down. I was able to do a lot of this at home, thanks to the Hickman. I got my stem cell transplant through my Hickman line. It was a complete game changer for us, and I will always be grateful for how it eased our way.

Right after my first bone marrow biopsy, they told me that I had the dangerous “Philadelphia chromosome”. This was usually a death sentence just a few short years ago. First discovered in 1960, two chromosomes in the invisible working of the body create a poisonous new merger. This unholy union sends a signal that triggers cells to multiply at an abnormally high rate.

It took over 30 years of focused scientific research to determine how to stop this uncontrolled cell growth.Just recently, I was reading the Pulitzer prize winning book The Emperor of All Maladies, A Biography of Cancer which begins and ends with Acute Lymphoblastic Leukemia. There are many stories in this book but most compelling to my situation was the story of Dr. Brian Druker, genetics researcher and oncologist at Oregon Health and Science University. Dr. Druker discovered how to break the fusion that was causing life destroying cell growth for patients who had Chronic myeloid leukemia (CML), a disease that used to kill 100% of the people who had it. And he was able to do it without harming healthy cells. In a reluctant and skeptical pharmacological industry, Dr. Druker single-mindedly sought out and found one company willing to collaborate to produce the drug Gleevec. Since its initial approval in 2001, Gleevec was approved for use in patients with gastrointestinal tumors and for patients with leukemia who had the Philadelphia chromosome. So when that PA said I was lucky, indeed I was, because Gleevec was available to me.

We remained in Seattle, with the admonition to be within 30 minutes of the hospital. Once, after a class three hemorrhage, I was rushed, nearly unconscious, to the ICU, where I received 5 pints of red blood cells and two of platelets. A person my size only has 10 pints or less. They poured it into my body so fast I had to be under a special hollow blanket filled with a constant flow of warm air. And when they were done… I sat up and felt fine, hungry and ready to go. Such is the power of blood.

Most cancer patients need blood transfusions, some more than others. Frankly I lost count of how many pints of blood I received. Every two seconds someone in the U.S. needs blood. And there is often a shortage. It is estimated that though 38% of the U.S. population is eligible to donate, less than 10% actually do each year.

But my life was saved, over and over by so many unknown donors, people who just wanted to do a good thing. I can’t do justice to the gift I received. All I can do is to say thank you.

On the night when this wonderful community held a fundraiser for us, Steve and I were back in the UW hospital where I was getting yet another blood transfusion. That’s a wonderful thing about community, the way it gathers up and lends a hand to someone in need. While my friends and family gave of their hearts and wallets to help us, we were doing the only thing we could do at the time, fighting to save my life.

On August, 21, 2013, I got a stem cell transplant. We had worked with the Seattle Cancer Care Alliance and Fred Hutchison Cancer Research Center for months trying to find a donor. There was no traditional match. But Fred Hutch had been successfully treating people with both cord blood transplants –that is, blood from the umbilical cord of a newborn, which is filled with stem cells, and haploid transplants—where they take stem cells from someone who has half of the recipient’s chromosomes. That meant one of our daughters could be a donor. Hmmm… I remember thinking—what a choice! Who would be my donor? A baby? Or a daughter?

Eventually I decided daughter, as the current research isn’t yet sure about which is the best choice. Haploid donors were the newest possibility in the transplant world. In the last five years they perfected a way for our daughter to donate stem cells and for me to receive them without getting dying from graft vs. host disease. I celebrated first my re-birthday this last August.

About then, it was apparent that one of my very dear friends was going to lose her battle with Cancer. She had clear cell uterine cancer, an illness so rare they have not yet discovered much that will stop it. I was too sick to go see her, so we had to carry on our own battles, which she ultimately lost. I was isolated in the post-transplant world, with a host of immunosuppressant drugs that became my daily companions. One of them, Tacrolimus, made my hands and sometimes my body shake. At the same time, I had to give myself insulin shots in the stomach 3-4 times a day to combat the steroid -induced diabetes. With my hands shaking, I nevertheless learned how to give myself the shots quickly wherever I needed them. It was a great metaphor and a teacher of the things I thought I couldn’t do but did. We all do things though our hands shake, as we navigate Life—facing illness, the scary things we reveal or confess to, bringing new life into the world, caring for our parents, and saying goodbye to loved ones.

After 11 months, I was able to come home because of the new cancer care center here at PeaceHealth. It was wonderful to be with devoted skillful nurses and an excellent oncologist who came once a week from Bellingham. I felt like I’d landed in –well, not exactly paradise, but in a warm and supportive environment that both Steve and I sorely needed about then. After 9 months of life in Seattle, we were battle weary, exhausted and shaken. But because everything was so precarious, we also needed to be able to get back to hospital quickly if an infection threatened. On the night of December 17 such an emergency arose. Dawn Alger, whom many of you know here detected an unusually low oxygen level during the usual blood draw. I remember her saying kindly but firmly: “No, Shann–you couldn’t go home and just hope for the best!” A CT scan at the Friday Harbor hospital revealed I had pneumonia and a fluid effusion around my heart. This prompted a whole lot of consultation between the ER docs from Friday Harbor, the Oncologist from Bellingham, and the Oncology team from UW Medical in Seattle, who decided collectively to airlift me off the island by helicopter.  We spent both my birthday and the holidays in the hospital there, before returning again to our island home.

I began the new year in 2014 weighing 97 lbs. I couldn’t get up from a stool without pulling myself up. I couldn’t open a jar of food. My muscles had been wasted from prednisone, the powerful steroid I needed to combat graft vs. host disease. I still needed powerful immunosuppressants and frequent blood transfusions. Cytomegalovirus or CMV was re-activated and a constant threat.

Because of the Cancer Care Center here at PeaceHealth, we were able to get the care we needed and focus on healing. Today, I am back to those two hour walks and more. We slowly worked our way through our PTSD. I have the appetite to eat, which still feels like a miracle after I’d stopped for so long that I was called anorexic. Over the time of treatment, I lost my hair—3 times, eyebrows, eyelashes, everything. I never once look in the mirror now without appreciating how it all grew back.

You might notice I said “we” healed and “we” had PTSD. Everything I went through my family of caregivers went through, my husband most of all, and our daughters. We learned that chemo brain and pain and overwhelm were all contagious. Caregivers are the heroes of the cancer experience, for it is grueling and long. In Lord of the Rings, Frodo could never have made his epic perilous and ultimately successful journey without Sam.

People often ask me what did I learn from this experience. I learned that there are Helpful thoughts and non helpful thoughts:

If you have cancer now, a very helpful thought is that Research is on your side. Every year, the treatments get more targeted and less toxic. That is an extremely hopeful thing.

Unhelpful is thinking that you caused your cancer, or thinking that someone else caused their cancer. I had a children’s disease. I saw kids as young as 6 months-old with leukemia. They did not cause their illness. It just happened to them. I learned that aligning myself with compassion is one of the most powerful energies in the world. I want to love people who are bravely fighting cancer, and applaud those who are courageously standing by them.

The Dali Llama says it is important to be happy in our lives. We have to LEARN to be happy, and it doesn’t come from a comfortable perfect life. Learning to be happy for me has been a combination of gratitude, appreciation, laying down the mantle of always trying to appear healthy and strong and being vulnerable. I learned that we all need to see our bodies tenderly, especially when assaulted by illness and the harsh cure. That is what helps us truly see the nitty gritty reality, strength, pain and beauty of people who fight for life and to stand with them.

That’s a part of what we are all doing here today. We acknowledge each other and say me too, I know, I understand. I’m with you. Look at how much courage there is all around us. Look at how abundant Grace is.

The new normal for me means to be slow with filling up my life. I have learned to do what I can on hard days and work or play on good days and let that be okay. When it’s all you can do, it’s all you can do. Now, when I plan for the future, I still always say “God Willing and Fingers Crossed”.

To all of those who came before me, the ones who weren’t as lucky, or who passed before research had a chance to find out what they needed, my deepest compassion. Life is ever surprising, and I was astounded by the year of 2013 in every way. I will always miss my dear friend who didn’t make into 2014 with me. The cold imprint of cancer is nothing I would have wished on myself, and I also know that my own little life is forever changed. I would have liked to stay innocent to this, and age as the healthy person who was never sick a day in her life, I didn’t get to choose that.  What comes clean over and over is this: How we react to life’s circumstances is the real gold; recognizing that everyone carries their own hard burdens and that courage is widespread in the human experience. Love is bigger and more powerful than doubt.

This was my survivor story. You each have your own. I am a walking miracle, it’s true. And so are you.

 

 

 

 

 

 

 

 

 

 

 

August 21, 2014 marks the one-year anniversary of my stem cell transplant. My re-birthday. And the end of a huge, transitional summer for me—and our family. Those long lazy “dog days” are over. I am always amazed and shocked at how the change of seasons suddenly appears in our march of days. It’s not the temperature itself as much as the change of light. June, July and August here in the Salish Sea were an anthem to summer beauty. I am so glad I was here to celebrate it.

Elena’s Journey: A Story That Needs to Be Told

A daughter needed to have adventure and freedom after our rigorous chemo and transplant world in Seattle. So she went to Peru, and for a time, found great fulfillment and physic healing in the adventuring, learning to teach English, becoming an English teacher, becoming a yoga teacher, and exploring the Sacred Valley, going to Machu Picchu and the like. Her regular phone calls in the late winter/early spring were such a delight in our pill laden, doctor focused, mostly isolated existence.

Then trouble arrived. Elena was sick, fighting to pretend it wasn’t so, but failing. The illness took her to places no one wanted her to go. By March, we were faced with Elena’s early return from Peru. It was premature and urgent. Turns out she’d survived a tough battle with typhoid fever. But she still had a debilitating and mysterious parasite. Despite working with the best doctors in Cuzco, they could not find the cause of the come-and-go searing pain, pulsing stings and (migrating!) lumpy hard masses underneath her lower right ribcage. We were pleading and they also told her to go home, as they had exhausted their resources.

She went straight to the Head of the Infectious Diseases Division, Microbiology & Global Health at UW Medicine in Seattle. Enter the period of “looking for the problem” which included coming home, then getting flown back off to the hospital. While the parasite ate her body, literally, we watched her eosinophils (a type of white blood cell) and her liver enzymes rise as her blood samples were sent to the Center for Disease Control and tested for 50 different parasites. All negative. But the confounded doctors had a suspicion that she had Gnathosomasiasis, the larvae of a parasitic worm Gnathostoma spp. Wikipedia offers the following discussion: “It has a complex life cycle involving at least two intermediate hosts, with humans being accidental hosts in which the larvae cannot reach sexual maturity. The main risks for acquisition are consumption of raw or undercooked freshwater fish and geographical exposure.”

Elena had ceviche once in Peru. Because it was in Cusco and unregulated, they probably used fresh water fish, which is far more likely to carry such parasites. I sometimes imagine the sweet “typhoid mama” who unknowingly and smilingly handed her the meal, along with the parasite and the typhoid fever.

Anyway, we finally Fed Ex’ed her blood to Bangkok because that was the only thing left to do and they are the best in the world on such subjects.. We sent it to the Department of Helminthology (the study of parasitic worms), Faculty of Tropical Medicine, at Mahidol University, Bangkok. When we got the report back that she tested positive for Gnathosomasiasis, we plowed forward into the treatment: three weeks of albendazole, a powerful worm medicine. And gradually, the worm larvae died and Elena came back to her life.

The Summer of 2014

All four of us were shaken by this experience, deeply aware of the depth of our PTSD following these two big near death events. Steve and I admitted to each other that our “qi” or “chi” –our life’s vital force— was frighteningly low.

I took the summer to re-build it. So did Steve. Dear Elena had to work to re-build her bank account back to zero. Mariya came regularly to visit and be supportive. We just all did what we had to do. When I look back at this year, I see a time when I lost my body… immune system, muscles, energy, appetite. All the things you most take for granted. Building it back has been slow but real. Every muscle I have now was one I brought back from the dead. Perhaps that’s over-stated but that’s how it felt. Luckily my muscle memory still had an idea how it was supposed to look. I imagine my new immune system, being sat down and lectured to by the rest of my body. “Now listen. We here have always been resistant to ‘bugs”. We don’t get colds and things like that.” And… wow, that’s how it seems to be once again.

Energy and appetite come and go. “Well, that might be your new normal,” says the oncologist. Perhaps. As I write this, a new symptom has crept in—a sudden arthritic pain in all joints. My lymphocytes remain high and we don’t know why. These are symptoms of leukemia. The doctor ordered another BCR-ABL test and it came back negative. A comforting negative. So we cautiously move forward until the bone marrow biopsy scheduled for October. “Maybe the Dasatinib is causing the high lymphocytes…” the doctors say. As long as the CMV stays at bay (which does only with the help of Valgancyclovir, a drug so powerful it’s considered to be carcinogenic), we accept it. On the anniversary of the transplant, I had a colonoscopy/endoscopy to see if CMV or Graft vs. Host disease were in my gut. Nope. All good. Except for the symptoms that come and go. But I can live with those.

 

I have learned you just do what you can do on hard days and play/work on good days and let that be okay. Cancer and all serious illness invokes the mystery of who and what we are. I pulled out a healing rune just because. It was Gratitude. Of course. How could it be otherwise? Elena was healed. I am one-year cancer free. A woman hearing my story said, “it’s still so recent. Give yourself time.” Good perspective. It can be easy to lose that.