Joshua's space

Josh Isaac reflects on living with cancer

Joshua Bondi Isaac 1972-2010

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Joshua Bondi Isaac, age 38, was proud of the life he lived.
He died on Monday, August 2, 2010 after a decade plus battle against
epithelioid sarcoma.

Above all he was most proud of being a husband to beautiful
wife Kim Haas Isaac, whom he met in 1991 at Camp Solomon Schechter where they
were both camp counselors.  They married
on August 20, 1995. A source of constant joy, the two had three
wonderful children Jacob, Sam, and Sophie. He cherished time with his family
and, despite the protracted battle with cancer, he made the most of the last
few years devoting that time to his wife and kids. They took many trips
together and made lasting memories celebrating all moments of life by living
each day as a blessing. Although he was dying, these were the happiest days of
his life.

He was born and raised in Seattle. A product of the public
school system, he graduated from Roosevelt High School in 1990.  He went on to pursue his education at Whittier
College, where he was active with the Orthogonian Society and Whittier Scholars
Program, where he made lifelong bonds of brotherhood with members of his pledge
class, the Untouchable 11.  He graduated
with a self designed major called Images and Thought.

This built on his love for writing and film, which he took
with him when he began his career at the Shoah Foundation. He worked there as a
librarian helping to document Holocaust survivor testimonies. In 1997, he moved
to Baltimore with his wife Kim and landed a job in the corporate communications
department of Baltimore Gas and Electric as a writer. While working in
Baltimore, he continued his education achieving a Master’s Degree in Creative
Writing and Publication Design. In 2001, he moved his family back to Seattle
where they bought the house he grew up in from the estate of his parents. He
continued his career in corporate communications joining Microsoft in 2002 as a
writer and media producer, where he worked until 2010.

First diagnosed with cancer in 1998, Josh endured multiple
chemotherapies, radiations, and surgeries over the years including the
amputation of his left hand. Josh used his creativity to help deal with the
situation, making a documentary in 2007 called My Left Hand, which screened
locally and won many honors and awards.

Among his hobbies, he loved creative writing and poetry,
sharing his works through poetry readings and on his blog. He remained active
in the Jewish community and continually supported Israel, keeping involved with
Congregation Beth Shalom in Seattle, the synagogue his parents helped found.

Josh is preceded in death by his parents Walter and Miriam
Isaac. He is survived by his wife Kim, sons Jacob and Sam, and daughter Sophie,
his brother Marc and their dear family, Suzie, Eli and Rina, his sister Shauna
and her husband Alan. He is also survived by his in-laws and close family Henry
and Kate Haas, Gerda Haas, David and Sharon Haas, and Sue and Sarah Haas. He
also will be missed by the Rozanek family in Bellevue, uncles Hymie and Freddie
Rosenblatt and family in Winnipeg, and the Pinsky family in Vancouver. He also
leaves several good friends behind too. He’ll be loved and missed by many.

The funeral will take place on Wednesday, August 4 at 11:00
a.m. at Congregation Beth Shalom 6800 35th Avenue NE.  From Beth Shalom, there will be a procession
to Herzl Memorial Park, 16500 Dayton Avenue North for the burial.  The shiva minyan will take place on
Wednesday, Thursday, Sunday and Monday nights at 7:30 p.m. at the Isaac home,
9871 43rd Place NE.

 The Isaac family
extends their thanks to Beth Shalom Community, Microsoft Corp., and the UW for
their unyielding support during this trying time.

In lieu of flowers, contributions may be made to the Isaac
Children’s Educational Fund at any Wells Fargo Bank account #9688563676 or to
Congregation Beth Shalom or The Northwest Sarcoma Foundation.    

 

Written by yoshinawa

August 2, 2010 at 8:09 pm

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Life at the B and B

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Of all things, life hasn’t had the chance to get routine while I have been convalescing at Bailey-Boushay hospice. Instead, it seems to be on a steady flow of change. One day I battle air hunger issues; tonight was occupied with complications coming from my bloated feet; the other night we adjusted my pain meeds until I passed out.

More or less, though, i spend my nights fighting through sleep. Only in the stillness and comfort of day light do I sleep soundly, reassuredly, that I’ll wake refreshed and alive. I do wake early, hours before I should but some minutes until breakfast is delivered. And after a hearty meal, I find my best sleeping of the day, sound, solid, sweaty, and complete. I then go slowly – it’s no longer a choice but a mandate, into my afternoon, a time I’d like to occupy with kids, making memories, and spoiling the little ones, but is satisfying if I can write, read, watch TV, maybe even shower.     

That leaves good visitation hours for the early evening PST. But since the influx of visitors, which is truly a blessing, I find myself hosting people at all hours of the day. It’s a pleasure but one that takes me from the pact I’ve made to write my memoir, and complete various essays to loved ones. It tears me from two loves: 1) writing – like keeping up the blog, adding letters to loved ones, journaling, and writing my memoir, and 2) visiting with people, especially family, throughout the day to collectively raise our spirits and find some solace in this bleak time. 

So I’ve decided to ask a favor that people keep visitation hours to the portion of the day from four to eight pm. Please call my cell at 206-853-1769 to help arrange to find a time/day that works best. I apologize to move to this arcane system but I need to prioritize now more than ever to fit in my wants and loves like seeing family, which is not negotiable.

It’s only a trial run like so much of what we do here, experiment with one drug to counterbalance the effects of another. I appreciate the understanding. Of course I am willing to make exceptions. But I hope that this holds for at least two to four weeks, maybe even more, maybe for two, four, six, eight months – as I live that long! 

Signing off tonight Comfortably Numb.         

Written by yoshinawa

July 28, 2010 at 1:31 am

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Eleven Years Later

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Today marks 11 years on the Hebrew calendar, 12th of Av, since my mom passed away, which is also coincidently close this year to her standard calendar anniversary of July 25th. Tonight I recognize her death while considering mine inside these hospice walls. I must admit this night on the edge of two worlds is eerily chilling, rocking me to the core of my being.

But few nights are as memorable as her final night 11 years ago. I stayed awake with family members waiting for a fragment of time to pass. It had been eight months since a stroke took us on a medical rollercoaster of disbelief, and just ten days since the doctors performed surgery to discover incurable cancer riddling her body. Since that operation her mind drifted in and out of consciousness; her spirit in and out of this universe. But we remained vigilant by her side, protectors of the fragile soul caught between worlds.

Nurses and doctors practiced in the art of dying spoke to us about the end. They read vital signs like soothsayers see astrological signs predicting imminent death. Tonight, they assured us, would be her last.

On this night, I feel an uneasy calm in these hospice hallways like there’s a hidden order to the universe I’m aware of but not privy to understand. I know souls are in motion with angels descending and ascending ladders like in Jacob’s dream. Even though I’ve seen the forlorn look in the eyes of other patients; heard their terrible moans from ungodly regions of space, I’m just not equipped to see the sight of angels; at least not tonight thankfully.

And however hard I tried the night my mom died, it escaped me there too. I held her hand, whispered in her ear, ‘G-d loves you and  we’ll be okay, but you need not suffer anymore, let go now.’ She opened her eyes in shock. She didn’t have to speak, her eyes said it all, ‘What do you know about anything, let alone death?’ I felt ashamed, for I knew nothing, and for that matter, little more than I do now. She’d fade in and out somemore and we’d take our shifts being with her.

I left when nurses came in to change her bedding and reposition her body. They told me she asked for me. ‘Where’s my boy?’ For the last few days all she spoke of was random shout outs to her ‘ma’ or ‘pa.’ There are small miracles in these days yet to be seen, the rabbi foretold us. This was one of them.

Another came in the waking hours of morning. Our stamina wiped away, we all fell asleep from my dad and sister on lounge chairs in the waiting room to my uncle and I on the hospital room floor. My brother, wife and sister-in-law all went home to sleep and catch a later shift. But there would be no more shifts. The nurse, who had hospice experience, caught my wary eyes as I opened them at ten after eight am. She carried my eyes up to my mom’s body. Twenty minutes ago while I was still sitting beside her, she held out shallow breathes like the distant rhythm of the tide heard from the high cliffs overlooking the sandy ocean pier. Now she lay still, motionless, without breath or soul.

I woke my uncle with the hallow words, ‘mom’s gone. She’s dead.’ And that began the grieving process that still hurts me to this day; it still haunts me even now in the airtight chambers of my lungs and the forgotten chambers of this hospice sanctuary. She needed to be alone to let go, I guess I understand now. I don’t know what I’ll need to do to let go but I guess over time, the days, weeks, months to come, I’ll learn.

I know there’s stuff I’ll never learn. I spoke tonight as we davened with a minyan to mark Miriam Isaac’s yartziet, how as a parent you try to negotiate the big pleas. "I suffer through cancer, okay, I’ll happily do that. But You G-d, Hashem, Can You please promise to let my wife and kids off for free? Please bless them with long, happy lives, filled with meaning, mitzvah, and Your approval." But I’m sure my mom made her bargains. Wouldn’t any parent? So how is it 11 years later I’m here now? I walk these haunted hallways, fearful that my breathing will continue to deteriorate. Already, I’m locked up here like a prisoner by the broken elements of an unhealthy body.

Through this process I’ve grown to understand that we’re not meant to understand the thoughts of G-d. Certainly my grievances are well founded but step in line, maybe behind the righteous family that perished in the concentration camps without any survivors. G-d loves us and we cannot venture to understand thoughts that far beyond our own meager thoughts. So I do take away lessons from that night 11 years ago. I do believe that my mom was calling to her parents, ‘ma’ and ‘pa.’ I do believe that she saw a better place, but held on with us for as long as she possibly could because she had faith; she believed in G-d’s love. And wanted us all to be together, or to slip out when the chance arrived, going on her next sacred journey while we all still had life to live here.

Written by yoshinawa

July 23, 2010 at 1:46 am

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I Believe in Miracles

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Judaism teaches that every new day is a miracle. Indeed, our morning prayers acknowledge this precious gift each person receives upon arousal. From the day I arrived at UW Medical hospital on July 7 and told that there’s nothing left for the doctors to do to save my life until today, I’ve felt the true power of each G-d given miracle. These days are nothing short of manna from heaven.

Since arriving at the hospital last Wednesday, I quickly succumbed to my failing lungs, requiring upwards of 10/12 liters of oxygen and more. Within a day of arriving, the act of standing to urinate or walking to the bedside commode to defecate caused my breathing to go into super drive. Doctors offered little explanation on what’s causing the issue and less advice on how to deal.

The best guess remained an infection like pneumonia. Although, some speculated on the return of the toxicity, one doctor hypothesized bleeding caused by the anticoagulant, and others spoke of the horrific possibility of disease progression. Whatever the case may be, after a few days of heavy rounds of antibiotics with no reduction in oxygen needs, it appeared apparent that the drugs were ineffective. The only thing readily apparent was the fact that I continued to deteriorate.

I recall a scare late one night. I found myself helpless at the bedside commode, shit and piss all over the place and me breathing like I sprinted a 100 stadium stairs. I tried to be inconspicuous for my college friend staying the night to help – how foolish is the fool when he last gasps for air. But my friend rose and responded to my command to get the nurse. Imagine what she saw – one man barely breathing and incontinent from the heavy rotation of antibiotics, and another man baffled by the whole scene and lost in confusion of a friend dying with nothing he can do. She was one of the good RNs; however, and gave more oxygen and waited and talked to me until my breathing was in control. Then she handled the pooh and pee with dignity and respect, cleaning me up and settling me back into bed.  

The next day, speaking with the doctors on rotation about the current situation, they gave me a little more than a week to live, emphasizing a prognosis made days earlier with now an end date in mind. I didn’t doubt the prognosis considering how I felt. But it was also that day where we turned a corner. Through the urging of my wife and best medical care provider – she saw my anxiety and fright, she pushed the doctors to give more meds to control air hunger and alleviate my nerves. We also chose to move to Bailey-Boushay hospice in Seattle. And that Monday July 12, I moved a few miles south to the warm, hospitable, and nurturing grounds of this once former AIDS hospice, now serving all kinds of needs. The diahrea, likely caused by the slew of antibiotics, passed within a few short days here. What’s more my breathing improved to where I’ve been able to lower the dosage from ten to six liters. I’ve had fewer and fewer episodes of air hunger and my endurance and stamina are building up thanks to PT and OT.

When word got put out about my condition, family and friends from all aspects of my life came through to support me. This felt no less miraculous than the dawn of a new day. From London to Winnipeg and Baltimore to San Diego, by planes and with cars loaded with spouses and children, these lovers of mine came to support and help in any way possible with no condition or expectation. It gave strength not only to me but to Kim and the kids in our greatest time of need. There’s a book out right now called Council of Dads written by a sarcoma survivor. I have not read it but I get the gist. I’m fortunate because these brave men, without question, volunteered to be my council, which I’ll hopefully elaborate on in a future blog post.

For now, I feel much better than I did 12 or so days ago when I checked into the hospital. I glow in the aftermath of a delightful miracle. I bask in the sunshine of love in the beauty of each interaction. Under the circumstances, each relationship has grown deeper, every conversation ascended to new heights in what was perceived as final moments but what will be classified as living life to the fullest each moment we are given. Although I’ve past the most dire predictions, I am still not out of the woods by a long shot. And, I admit, hospice is the right place for me. I can die at any time considering the predicament with my lungs. But that’s no excuse to stop living. In fact, it’s a prescription to grab each moment of life and carpe diem.

Written by yoshinawa

July 20, 2010 at 1:43 am

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Hospice

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My journey battling epithelioid sarcoma that has taken more than 12 years of my life, now comes down to the last few days of life barring a miracle. The disease progressed too far, too fast and now my body hungers for air at the slightest bit of exhaustion. A simple act to urinate, defecate, or even stand, leaves me sucking in oxygen. Instead of trying to cure these symptoms, the health care professionals are trying to manage to make me as comfortable as possible with drugs.

I’m 37 years old, just a few weeks short of my thirty-eight birthday, my twentieth high school reunion, and my 15th wedding anniversary. I leave behind my soulmate Kim, someone I met at the age of 18 as a kid and managed to hold onto through the ups and downs of life, which included traveling throughout the world, and living in the Pacific Northwest, LA, Baltimore and back to Seattle. In that time we grew careers and homes, friendships and angels, pug dogs and three thriving children. These children have become lights of our lives and treasures for our families. I’ve found myself blessed with not only a beautiful nuclear family but an incredible extended family of siblings on all sides with my brothers Marc, Dave, and Alan, and sisters Shauna, Suzie, Sue, and Sharon, devoted in-laws, and two nieces and a nephew. I also have family that extends around the world from the US, Canada, England and Israel. What’s more is I’m losing the love and companionship of deep, sincere friendships formed from early childhood, through high school, college and beyond. I’ve been blessed beyond imagination by a community that includes my synagogue Congregation Beth Shalom, children’s school Seattle Jewish Community School, and place of work at Microsoft. Through these connections and as I see the resounding support from those who have already heard this news, I am grateful to have been touched by so many loved ones, so many caring souls.

The mourning that is to begin for my loved ones in the days and weeks ahead started for me two and a half years ago when I learned about this latest reoccurrence of disease. I could speak of it as a blessing having the wisdom to know how valuable life is when you know the outcome is likely certain death. But it was trying, to say the least, to get the emotional and psychological bearings around this major head trip, and to deal with the continued bitter aches and pains from surgeries, chemotherapies and radiation, to the minor pokes and prods. Not to mention the strain it puts on relationships with those you love most. But it gave me time, more time to be here. And I’d still take more if I could, I‘d take as much as I can get even as I suffer immensely.

Perhaps in another space I’ll wax more philosophical about the meaning of this suffering and what I’ve learned. Perhaps I won’t blog again. I don’t know what the days ahead entail as my lungs continue to weaken and I get more and more sedated on drugs. I hold my faith close to my heart that I’ll be reunited with loved ones in a world to come. Meanwhile, I do know this is the best life I’ve ever had. I’ve been blessed and I truly believe it. And I’d live this life all over again.

Written by yoshinawa

July 10, 2010 at 10:29 pm

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Hospitalized. Once again!

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Yes, my long winding journey takes another turn, just as the blistering Seattle Sun flashed its smilingly delightful face. I always did wonder if what happens in the sky above mirrors some aspect of our collective human condition. The sky and the earth quibble like siblings until the realm of angels sings. And when that song is sung magic happens, like the first snowfall of the season, or the end of a dry draught, or the start of a long awaited summer after a particularly grueling winter. In Seattle, through three months of unseasonably cold weather, we finally get our first dosage of the healing powers of the sun. The sun is a gift; her gift.

This opening is dedicated to my friend Joyce Shane, who after teaching and leading this community for more than 10 years, became an integral part of its soul. I met her a few years back, through mutual friends and we shared mutual admiration for each other. She became a good friend in a short time – always asking first how I was doing despite her growing illness. Now, she has joined with the angles where, if you had ever heard her chant Kol Niedre, then you would know that is where her truly exceptional soul belongs.

Meanwhile, I felt shortness of breath and an increased heart rate early Monday morning. I did a nebulizer treatment and watched some mind numbing TV to distract me from the fact that walking four steps exhausted me. But in my stubbornness, I didn’t want to wake anyone and found life tolerable if not comfortable after being stationary for some time. I caught a little high watching a new day rise and thinking over all the hope and possibilities one day holds. In this state of mind I almost felt ready for bed. But in the bedroom my breathing was noticeably shallow and belated. And once again Kim came to the rescue, arranging rides and childcare and helping to dress me.

I was admitted to the ER, where they started moving quickly, getting an X-ray and later a CT. There appears to be more fluid/toxicity/disease progression/pneumonia (name it what you want, who knows the answer yet) in the right lung that wasn’t there on the CT from 6/23. We began treating this like an infection but in two days there’s been minimal response. This has led to some lengthier discussions about hospice care now and what my needs are going forward. So I’m going to sleep on it. And will report more from the frontlines of the cancer war later. 


 

Written by yoshinawa

July 9, 2010 at 2:32 am

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The goodness of My Left Hand

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My dear friend Kevin Thornton, who has been a mentor to me in life, wrote an amazing blog post recapping the screening of My Left Hand. The Baltimore screening itself wouldn’t have happened without the effort he put into presenting the show. What’s more, his amazingly talented family worked tirelessly to add some new music to the film, including Sooze who edited and Sean who wrote the soundtrack.
 
On his blog, you’ll find a link to his music, including a beautiful song called Hope and Darkness, which was added to the score of the film. There’s also some engaging music written for the film and after that’s on the music site. You’ll also find a post recapping the event — it really puts you in the moment and captures Kevin’s brilliant voice as a writer. As well there is a post reminding people to attend the showing filled with his love and care for our friendship. 
 
Kevin is a prolific writer and I hope you enjoy his style as much as i do. But what’s more, it means so much to me and helps me to face a new day. Thank you Kevin for the kind words and support. They are a gift.

Written by yoshinawa

July 6, 2010 at 12:36 am

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