Saturday, December 17, 2011

Emerging Into The LIght - Dec 17. 2011

We have come into this exquisite world to experience ever and ever more deeply our divine courage, freedom and light! ---Hafez, Persian poet (1325-1389)

This is the season when we celebrate our emergence from darkness into light. Chanukah, Christmas, Kwanzaa and other celebrations around the Winter Solstice all use candles to metaphorically guide us toward a more hopeful time, perhaps helping us move from an internal spiritual hibernation to a more outward interaction with the world. On Thursday I got to spend some time in Anemo’s Pre-K class at Temple Emanu-El watching him roll candles for his elaborate chanukiah (which he proudly told me was the last one in the class to be completed). I look forward to lighting the first candle with him soon, especially since he has been one of my brightest guiding lights through this challenging time.


Other points of light came from my colleagues at Nueva, many of whom willingly stepped in to cover my various duties, and the Nueva administration, which made the transition to this obligatory sabbatical as smooth and stress-free as possible. In addition to the light from special families and individuals around the Bay Area, we felt radiant warmth coming from friends and family in Seattle, Austin, New York City, Miami, Vail, Woonsocket, Belfast, Bristol, CuraƧao, Madrid, Amsterdam, and many other places around the world. I also felt the illuminated guidance of my mother, who walked this path fearlessly before me. But the most significant beacon during this time has been my wife Suzanne. She has met me in and guided me through the darkest of times, and with her skillful humor and grace, I have come through this ordeal even stronger than before. With a nod to Lou Gehrig (and, by extension, the always gentle and avuncular Jon Osterland, who died of ALS on November 30th), I consider myself the luckiest man on the face of the earth.

But I have seen dark days. Perhaps the darkest day for me this year was not when I found out my tumor had returned (after all, I had complete confidence in Dr. Mitchel Berger, my outstanding neurosurgeon), but the day I learned the tumor had gone up in grade, requiring post-operative treatment. Although I barely took in a word my neuro-oncologist said on the phone that day, I knew I would be going through some intense radiation and chemotherapy. I encountered some tough days and some easier days, but the experience not only made me stronger, it made me more compassionate too. I saw people in the waiting room of radiation oncology much younger, much more incapacitated, and much less hopeful. It was good practice to project loving kindness toward each of these individuals as they were gradually coming to grips with their own particular situations. I still think of many of them and express the hope that we can all uncover the root of happiness during our shared but unique journeys.

I am now a veteran of chemotherapy and radiation oncology. I took temozolomide, a chemotherapeutic drug, every night for 42 nights, finishing just this past Tuesday. And with 31 radiation sessions already completed, I have only two more to go. The last one, coincidentally, falls on December 20th, the darkest day of the year. After that, the only radiation I expect to receive will be the ultraviolet radiation from the sun as the days get longer and longer. While I will not miss the radiation sessions, I will miss the daily walks to UCSF through Golden Gate Park. Every weekday I walked the mile and a half there and back, getting to know certain trees, flowers, and even mosses quite intimately. Each day, especially when I could be fully present in the moment, I saw something new that I couldn’t believe I had missed before. One of my favorite landmarks of the walk was the plaque on a bench just up from the carousel in the Children’s Playground. It was a line from Joni Mitchell: “We are stardust, we are golden, and we’ve got to get ourselves back to the garden.” I’ve learned that there is no use fighting against the situation you find yourself in. There is no good or bad, everything just is what it is. One of the benefits of having had this tumor is that I was able to get myself back to the garden.

And speaking of the garden, I have been so grateful for the outpouring of love and generosity from the Nueva community, the Temple Emanu-El preschool community, and the San Francisco Friends School community that has been “holding me in the light.” The garden has come along wonderfully (thank you, Lois; our thoughts are with you!), and while I have not been able to thank everyone for their individual contributions, my gratitude toward each of you is boundless. Below is a recent picture of me sitting in front of the vegetable garden. (An incredibly thoughtful get well card from the class of 2008 is to the left—thank you for organizing that Chris!) You can tell we haven’t weeded the garden in a while, but Zubin Mobedshahi—Nueva alum, farmer extraordinaire, and godfather to Anemo—assured me that leafy vegetables are less susceptible to weeds. Just look at that Swiss chard for instance, which we found out Anemo really loves to eat!



Which brings me to the absolutely delicious food we received from so many families. Our family was incredibly fortunate to taste such a wide range of meals, lovingly prepared and delivered over these last few months. (A special thanks to Helping Hands—Lang Anh, Sandra, and Liza—for  spearheading this effort.) And on the days we didn’t have deliveries, a generous donor provided money for healthy meals in our neighborhood. In addition, an unplanned but joyous part of my daily routine evolved over the past month: Helen Werdegar’s delivery of homemade nourishing juices, broths, and soups awaited me every Monday and Thursday, and I think they are one of the primary reasons I feel so good so late into treatment. My radiation oncologist, a smart and kind man by the name of Igor Barani, keeps telling me I will eventually feel fatigued and need to stay in bed for a while, but it hasn’t happened yet. Even after 31 sessions, I am still planning to play handball this weekend with Andrew Salverda. (I discovered handball courts in Golden Gate Park during one of my daily walks.) One interpretation of the miracle of Chanukah (thank you Rabbi Noa Kushner) is the simple refusal to surrender to the obvious (that there is not enough oil). With the immense support I have behind me, I refuse to surrender to the obvious conclusion that I should be incapacitated by fatigue.

Another important sustaining force has come from the waves of good vibes and kind thoughts that have reached my shore. From heartfelt cards and messages to math puzzles for keeping my brain alert, from thoughtful museum memberships to personal visits, I have received such incredible generosity and felt thoroughly grounded in community. Most satisfyingly, so many students I have had in class over the years taught me the true nature of giving through their selfless actions. For instance, Mimi, Helen’s daughter in the 7th grade, has inspired me with her positive spirit and ability to reach out. Not only did she encourage me to watch the movie Soul Surfer to gain a greater perspective; not only did she organize a bake sale during the screening of the film HAPPY to raise money for brain cancer research; she also committed to making 1,000 origami cranes, entirely by herself, as an outward expression of her wish for my full recovery. Below is a picture of me holding the first 999 cranes, all strung together. Mimi is holding the 1,000th crane, a beautiful gold bird that portends good things to come. With Mimi around (and all of you who have supported me in the same spirit), I have no need for fear. The prevailing optimism and positivity remind me of another quote from Hafez:

Fear is the cheapest room in the house. I would like to see you living in better conditions.

 

 


On Tuesday night, after my last radiation session is over, Suzanne, Anemo, and I will be joining some friends to celebrate another Winter Solstice celebration... the Persian night of Yalda. We will place our legs under woolen blankets, read poetry out loud (a lot of Hafez!), and eat plenty of pomegranates and pistachios. I have a lot to be grateful for as these dark days end and the light returns in abundance, perhaps most of all the realization that so much light can exist within dark times and the darkness is never far away from the light. The only way forward is to embrace wholeheartedly everything that comes. As Bethany Hamilton, the surfer who lost her left arm to a shark attack, says in Soul Surfer: "I've had the chance to embrace more people with one arm than I ever could with two." Another interpretation of the miracle of Chanukah is that the Maccabees dared to use the flame to examine the destruction of the temple, and by doing that, showed that illuminating the painful is as important as seeing the beautiful. I want my time on this earth to be not only about teaching, but to also involve a focused awareness of human suffering. I have been blessed to receive insight into this first noble truth (that life involves suffering), and through my ongoing meditation practice (alone and in community at the San Francisco Zen Center), I hope to discover my path in aiding its alleviation.

 

I feel so much closer to all of you—to all of humanity, in fact—since the onset of my condition. I cannot thank you all enough. But perhaps I don’t have to. As Hafez says:

Even after all this time,
the sun never says to the earth,
"You owe me."
Look what happens with a love like that.
It lights the whole sky.

Wishing you all light and lightness during this holiday season.
Stephen

Wednesday, November 2, 2011

(A New) Part of Our Life - Nov 2, 2011

Hi all,

A belated update on our lives. 

Today was Stephen's first radiation session and tonight marks the first time he will take his chemo pill. His radiation schedule will be 5 days a week for 6 weeks and he will be taking chemo pills every day for the full 6 weeks. At the end of this period, he will have a month off and then start on a higher chemo dose and take pills for 5 days and none for 23 days. He will repeat this cycle for up to a year. The doctors believe he will tolerate the treatments well and we will be vigilant in our observations of Stephen throughout this process. A commitment for certain.

But, as the oncologists have stated, this is a part of our lives, not our entire life. We are holding onto that perspective and trying to go about the other parts of our lives. I have been back at work for the past few weeks, Anemo's been at school, Stephen has taken him to swim and soccer classes, Halloween, and birthday parties, trying to get into life as it was (albeit a bit changed). 

A most poignant symbol of how Stephen's treatment is part but not all, was having Anemo's parent/teacher conference soon after being at UCSF. What a wonderful reminder of the full life we have. How fortunate we are that Stephen can get the treatment he needs. How fortunate we are to have a son who lives joyfully in the moment, engaged fully in what is presented, and makes us laugh.

Much love, Suzanne

Friday, October 14, 2011

"Date Night" - Oct 14, 2011

Date Night

When we first had our child, the unsolicited advice frequently dispensed included, "make sure you carve time out for yourselves - date night!" Needless to say, we rarely followed through with this suggestion, not for lack of interest but, well, many of you know how it is, best intentions and all.

Thank you Mitch Berger. 

Because of you we have been able to have two date nights over the course of the past few weeks. Our first one was the night after surgery. Stephen out of ICU and in his private room, suggested I stay on the ever-so-comfortable fold-out chair beside his high-tech hospital bed. We shared his plum chicken and prune dessert, watched an episode of Modern Family on the mini-TV, and spent the night among the beeping of machines and hourly check-ins by nurses. Not what we imagined date night to be, but somehow fun nonetheless.

Today we had another date. This time to hear Vickie Kennedy, Dr. Berger, and several members of his team discuss the innovations UCSF is working on, not just in tumor care/prevention/cure but also on enhancing the quality of life of brain tumor patients and their caregivers. Mrs. Kennedy, aka Teddy Kennedy's widow, spoke inspiringly about living life fully, "enjoy your family, enjoy your life." She shared many anecdotes of their final year together, one filled with much happiness.

Two points in her presentation stayed with me. She referred to Senator Kennedy's brain tumor as "our brain tumor." As his primary caregiver, it not only impacted his life greatly, it did hers as well. As you can imagine, their relationship continued to deepen because of this experience. She did also say, that in dealing with the doctors, he maintained his public persona of nice guy, while she became the fierce lioness while questioning and planning treatment. Not sure about being the fierce lioness, but I do think Stephen has lots of that nice guy in him.....

The other concept that stayed with me was her description of "living in three time zones." As soon as it was clear what his diagnosis was, Vickie saw her husband live in the practical, present, and goal oriented zones. He took care of personal business, finances, spiritual, etc. by meeting with the necessary people and squaring away what he needed to. They made a commitment to live in the present, enjoying life and not grieving until it was time to do so. And, lastly she described the goals he set for himself, making it back onto the Senate floor to sign the Medicare bill, speaking at the Democratic convention, seeing "his President" be inaugurated. He strived to make these goals happen.

Equally inspiring at this brain tumor talk date, was hearing Dr. Berger and his team describe the research and advances they are making. The focus today was on quality of life issues and specifically a model they are proposing that will take patient and caregiver from the moment of diagnosis through treatment and beyond and offer consistent care and resources of every kind. This proposal is still in the fundraising stages and we look forward to learning more about this plan as they come closer to implementing it. In the meantime, we have inquired about donating to this effort for patients and caregivers.

We have been overwhelmed with the generosity of those in our school communities. As you know, The Friends School families funded us for healing treatments and The Nueva School families did so for our newly minted "Garden of Wishes" and additional expenses. From these funds, we are donating $360 to UCSF to help bring their vision of care taking to fruition. In the Jewish tradition, when offering a monetary gift, it is customary to do so in multiples of 18 (the numerical value of the Hebrew word for life - Chai - adds up to 18). We thank you, our caregivers, for making it easy to offer 20 times life to future caregivers in honor of our brain tumor.

Suzanne

Stephen and Dr. Mitch Berger today on our "date!"


Thursday, October 13, 2011

"The New Normal" - Oct 13, 2011

I think I finally understand the definition of "the new normal." We now go about our days very differently than we did just a few weeks ago and are more hyper aware than we have ever been. With that, we are also more grateful and present.

At the height of the new normal, came the conversation with the radiation oncologist yesterday. Suddenly what seemed unimaginable and scary, started presenting as doable and necessary, a new routine for a little while that we will graciously accept. The treatment plan is not yet set in stone but we are gearing up for the likelihood of six weeks worth of radiation and a chemo plan we will learn about next Friday. We continue to feel optimistic and confident that the care Stephen is receiving is as good as it gets.

Below is a picture of the three of us (two looking more tired than the third....) yesterday dropping Anemo off at school, before staple removal and the radiation meeting. 


Will send along more news as we receive it.

Much love, Suzanne

Friday, October 7, 2011

Next Steps - Oct 7, 2011


Dear friends and family,

We received a call last night from Stephen's oncologist with more news. Everyone is pleased with the success of the surgery and, as far as they can tell, the tumor was removed in its entirety. The pathology results came in and the tumor did go up in Grade (the last tumor was Grade 2 and this one he wished he could call it a 2.5, because of the predominance of the Grade 2 cells, just a little bit of Grade 3 - but there is no such thing). As we mentioned before, due to the fact that it was a recurrent tumor, treatment was likely. Yesterday's phone call confirmed this to be the case. We will meet with the radiation and oncology teams in the next few weeks to learn about all the options and choose a treatment path.

Thank you for your continued care and well wishes.

Suzanne

Sunday, October 2, 2011

Recovery has begun! Oct 1, 2011


Recovery has begun!

Stephen has been home for 48 hours now and is in full recovery mode - mainly possible because of our family, friends, and school communities. We are being nourished physically, spiritually, emotionally, and intellectually. Scheduled food deliveries from Nueva families will begin next week, while unscheduled ones have been appearing at our doorstep. A Friends School family stopped by to offer us a Rosh Hashanah meal, a meaningful gesture as we have so much to be thankful for in this New Year and no time to really acknowledge it. Anemo led us in the blessings for bread and wine (thank you teachers at Temple Emanu-El!).

When asked what we needed besides food deliveries, we mentioned that we had planned on cleaning our yard and planting a garden this fall, creating a peaceful sanctuary for Stephen's recovery. Since the surgery happened sooner than we expected, this too is being taken care of for us. Nueva families will be donating plants, while a former Nueva parent and a colleague and friend have spent countless hours planning the "make-over." We received generous support from a family to have the yard cleaned and supplies bought. The first lemon tree arrived this afternoon! 

The Friends School community gave us the gift of multiple massages and acupuncture treatments. Stephen had one this afternoon and was able to relax in a way he has not in a long time, especially with the lavender, sesame, and almond oils. I look forward to scheduling one for myself next week.

Friends and family are calling from far away, others are bringing books, stories, and offering movie suggestions. Temple Emanu-El families are providing playdates and rides for Anemo.

With all of you taking over where the doctors left off, Stephen is continuing to get stronger and healthier. 

Tomorrow we celebrate Stephen's 43rd birthday. 

With much love and gratitude, Suzanne


Thursday, September 29, 2011

Home! - September 29, 2011

This message came in at 6:30PM from Suzanne:

Stephen is home! Resting and "happy to be home."

Stephen coming home, September 29, 2011



Hi all,

We've had spotty Internet service at the hospital so a quick bullet pointed update about yesterday and today!
  • Stephen was moved from ICU to his own room on Wednesday afternoon. Though we were sorry to say good bye to the wonderful nurses in the neuro ICU, we knew this was a great sign.
  • The pain and swelling are much better this time around. It is likely due to the fact that they used a drain in his brain this time, that was removed yesterday as well.
  • Since we were in a private room, the nurse allowed us to smuggle in a 4 year old package who was thrilled to see his daddy.
  • Stephen is having an MRI this morning, Thursday, and will then be discharged! Incredible news! We expect him to be home by evening.
  • The main issues we are now dealing with are what they are calling a "droopy lip" and the news from pathology about the next steps in treatment. The minor paralysis on the left side of his lip is because they needed to get much closer to the part of the brain that controls motor function, the tumor was embedded more deeply there this time. Though the pathway that controls his lip was disrupted, the neurosurgeon assured us his brain was already working on creating a new pathway. Soon that smile of his will be symmetrical again!
  • We will know by the end of next week what kind of treatment Stephen will have. He did not have to have chemo or radiation last time but because this is a recurrence, the recommendation will likely be further treatment. We will keep you updated.
Thank you for all the powerful positive energy you have sent our way. Stephen has been so nourished by the kind words, offers of support, and prayers of every kind.

With much love, Suzanne

Tuesday, September 27, 2011

Second update, September 27, 2011

As we rode the elevator to the pre-op room this morning, Stephen found the whole experience analogous to travel. Restless sleep the night before. Attending to last minute details. The "hurry up and wait" factor once you get there. Going through all the check points. Longing to relax once on board.

When Stephen finally boarded his hospital bed, receiving first class care, he was relaxing. IV in place and pillows propped, he was ready to go.

Our trusted navigator, Dr. Berger, concluded the five and a half hour journey safely and with good news. The mission was successful and after a report from pathology next week about additional treatment, he hopes never to take us on this trip again.

Suzanne

Successful surgery - September 27, 2011

At about 1PM today, we heard from Suzanne and Liza that Stephen was out of surgery.  The surgery was successful, and it is likely that Stephen will be able to go home after a couple of days.  We will know more next week what follow-up there will be.  

Stephen felt strong and confident going into the surgery, and he and Suzanne are very grateful for the love and support they have received.  Suzanne may give me another update tonight, so please check back.

Thank you very much for your encouragements and support for Stephen, Suzanne, and Anemo!

Lang Anh

Monday, September 26, 2011

"Find joy and peace in this very moment" - September 26, 2011


"Find joy and peace in this very moment." 
          -Thich Nhat Hanh

As you can see from the photo above, Stephen and Anemo have matching hair styles. It all started last week when Stephen had Anemo shave his head in preparation for surgery. The next morning, Anemo decided that he too would like that look and Stephen took the electric razor to our son's head. Luckily no one suggested I join in solidarity.....

The lifesaver candy-like bits on Stephen's head were placed on him at his MRI appointment today. They will act as markers as the neurosurgeon navigates through his brain during the operation.

This morning was all about being tested. The MRI went well and he even agreed to stay in longer so he could help with a research project (a total of an hour and 15 min!). The MSI was next and he spent an hour and a half locked in a vault of a room answering questions so they could record his brain activity. As only Stephen would, he spent much of the time trying to come up with creative and complex answers to simple images and mundane directions.

We (two grandfathers, an uncle, a mom, and dad) proudly watched Anemo at soccer practice in the afternoon and then had a quiet and casual dinner as a family.

We are ready, as ready as we can be. The good thing about having gone through this before is that we have a sense of what to expect. The negative part of having gone through it before is being able to visualize it all. Years ago, Stephen told me I was his favorite person. Yesterday, in one of those moments when I feared what was to come, he comforted me, assuring me that all will be fine. The fact that Stephen can keep his sense of humor, maintain his equilibrium during such uncertain times, find joy and peace in the moment, for all these reasons and many more, he is my favorite person.

Suzanne