Jonathan Shoham

My friend and cousin Jonathan Shoham succumbed to his battle with ocular melanoma on June 21^st. His passing symbolizes a great loss to humanity and for the Jewish people – a nation he proudly called his own. A fabulous father to four, devoted husband, kind son and sibling, and loving family and community man, his death leaves a void felt all the way from the golden city of Jerusalem, where he was undergoing tests at Hadassah-University Hospital when he died.

His connections to our family run deep. Kim took her first trip to Israel for Jonathan’s Bar Mitzvah when she was just a kid in the 1970s. I first met him when I visited England with Jacob two years ago. Already, though, we shared a special friendship through our battles with cancer, speaking at length by phone and emailing regularly. Jonathan owned a brilliant mind and put that sharp instrument to work on living the best, healthiest life he could following his diagnosis. When in London I was dealing with this current reoccurrence while he was in remission from his first battle where the deadly and rare form of melanoma appeared in his eye.

I found wonderful inspiration through our friendship. We engaged in one of those deep, life affirming conversations that night I met he, his wife and kids before they moved to Israel. Jacob played with his cousins and we ate a fine meal with pureed vegetables researched for the energy and the ability to resist malignant cells. And through his wise advice and teaching, I practiced more healthy habits these past two years.

For Jonathan, though, his fight with cancer was not over. Months after I visited he started a blog called Jonathan’s Chopped Liver to describe a biopsy of spots that appeared on this vital organ. To our greatest fears, this nasty cancer returned. But if anybody could beat it, Jonathan showed the will and intellect to overcome it. He put that brilliant mind to work researching all possible answers to cure this disease.

He kept an incredibly positive and uplifting message on his blog, confident he could beat this. I knew through his blog that the tone started to change in the last couple weeks as he dealt with a bloated liver. I have to admit that his death, the suddenness of it all, came as a real surprise to us. It’s shocking how a voice of hope, Jewish wisdom, and love could be silenced so quickly. His last blog post wrote of a wedding, showing his humor in regards to narcotic highs to his deep emotions and spiritual underpinnings represented by a righteous blessing he received and his tearful response.

Jonathan wasn’t the only one blessed; we all are for having known this man of faith. I’ll never forget meeting his beautiful family in London. And I take pleasure knowing that our children will always have each other in this world.

My Left Hand East Coast Premiere Featured in Two Articles

There are two amazing articles out this week to highlight My Left Hand for the East Coast premiere this Friday. Once again, major thanks goes out to Kevin Thornton for publicizing the event and getting the press interested.

Read Documentary Maker Chronicles Battle With Cancer in the Baltimore Jewish Times and Film about man’s battle with cancer to premiere at Carroll Arts Center from the Carrol County Times to learn more. Also, it’s interesting to catch two different takes on the same story, both moving and uplifting in their own rights.

 

 

My Left Hand East Coast Premiere/Poetry Reading

“Nothing stirs when there is nothing to move it.”

–       Kevin Thornton

In the world of yesterday, I’d be in DC/Baltimore area this week for a trip with family and a screening of My Left Hand. In the world of cancer I haven’t even had a chance to promote and celebrate the occasion and the activities of this week, which my dear friend Kevin Thornton worked so hard to bring to fruition.

As I finish another phase of this journey, My Left Hand will premiere on the East Coast in Baltimore, where Kim and I lived for four years. While I won’t make it, I invite any interested to go and support us. And please help get the word out. Here’s the details:

My Left Hand

A film by Joshua Isaac

Carroll Arts Center

91 West Main St., Westminster, MD

Fri., June 25, 2010 – 8 pm

Sunburst Productions in conjunction with The Carroll Arts Center is proud to present the East Coast premiere of Joshua Isaac’s documentary film "My Left Hand" on Fri., June 25, 2010 at 8 pm in Westminster, MD.

The 81-min. documentary was written and produced by former Baltimore resident Joshua Isaac. The film follows Joshua and his family as they struggle with the spiritual, physical and emotional effects of Epithelioid Sarcoma, a rare form of cancer.  The soundtrack for the film features music by Carroll County residents Kevin and Sean Thornton.  My Left Hand has been featured in the 2009 Seattle Jewish Film, the Tacoma Film Festival, and the Seattle True Independent Film Festival (STIFF).

The premiere is free. A goodwill offering will be collected to benefit the Northwest Sarcoma Foundation. The Carroll Arts Center is located at 91 West Main Street, Westminster, MD, 21157. For more information contact Kevin Thornton – Thornton923@comcast.net.

In addition to the screening, Kevin set up a poetry reading the night before. Don’t miss a chance to hear his eternally moving writing. He’s honoring me by reading some of my work from my writings over this past year. Here’s the details:

Thursday Evening Poetry in Carroll County

Thurs., June 24 – 6 – 8 pm

Carroll Arts Center

91 West Main Street, Westminster, MD, 21157

One Tree Productions presents:

http://www.onetreeproductions.org/html/poetry_cac.html

Un update from the Holy Arms of the Kline Galland Home

Shabbat holds a certain peace over this place. It’s quiet; it’s serene; there’s solitude; and there’s certainly a Force that holds us all in check like time is frozen in a long, never-ending prayer.

I wrestle with feeling the protective hold here with the realistic urge that I want out – I’m too young for this, my kids grow older at home without me as life goes on, and I spend a lot of time alone, chained to machines that keep me alive like a prisoner in a cell. I think that without much fanfare I could argue to be home now or going on my way early next week. But through the better advice of family and professionals and the realistic nature of my needs, I’m going to stay through next Friday, June 25^th, bringing it to almost four weeks since that day I left for the ER.

Each day here, I make steady progress toward my goal of returning to the baseline health I was at before this chemo. I’m still on oxygen 24/7 but down to a very tolerable two liters at rest and three liters while active. Meanwhile, I continue to improve on two fronts – one, with my lungs getting better from the steroids and the extended rest, and two, with physical and occupational therapy building my stamina and knowledge to recognize and recover from situations that drop my O2 levels and raise my heart rate. When I face stairs now, I know to take my time, pace myself, and control my breathing so that I can manage them with grace.

I’d like to go home with those O2 numbers down, where I’m not on oxygen all the time. Even though I have the equipment at home to have oxygen at this level, it’d be ideal to not need it all the time. I’m also still taking a high dose of steroids that needs to be administered by IV. By Friday that dose drops – as I’m weaned down, so I might be able to take pills instead of liquid when I return home.

We had a lengthy discussion with my family present as well as representatives from hospice and professionals here at the Kline Galland Home. It felt much like the meeting we held when leaving the hospital, stating our goals, defining my situation, and learning about the next steps in the process. With nursing and PT/OT present, I was convinced to hold on for the longer stay. We also decided to go home under health care, continuing to take advantage of the benefits like getting therapy and recovery help in the house. We will transition into hospice from home health care at some point but the goal for now is my short term recovery to health.

So continuing to increase my lung strength and getting the proper medical and physical care make pretty compelling reasons to hang on here for another week. Plus, the steroids give me a healthy appetite as I enjoy feasting on my kosher meat meals, which are a rare treat at home. And, despite the loneliness, I hope to write, write, and write while I have the solitude, knowing I may never have expendable time like this again. It’s all time — and for me that means time to make my mark, write my words, and give hope and care to those I love even when I’m no longer here.

I continue to be grateful for all the help that’s gotten me to this point and which has helped prop up my family through these weeks of crisis. Thanks goes out to my wife, kids, siblings and extended family for giving me a love to hold on to, and to all the people who are reaching out to help in some way – large or small — through visits, meals, words of encouragement, and any other means that teaches us of a world of kindness and a destiny of peace.

The Endurance of Time

So strange how time moves. I have very little recollection of the week I was hospitalized other than to know there was pain, confusion and despair. I saw video from that week today and hardly recognized that guy mumbling gibberish behind the loud hum of a cranked up oxygen tank. I know of no days, no life in a linear hour to hour concept, from the Monday night when I checked in to ER until the Sunday when I checked out of ICU; only moments of passing life from the aching despair of a sick bed.

I survived because of this strong love I couldn’t see but could feel – in a wife of faith, in children of devotion, in a brother of conviction, in a sister of care, in a family of want, and in a community of hope. It enveloped me, raised me while my spirit twisted between worlds. I came down from that bewildering height still negotiating what I saw, what it all meant, while lost for words. I’m still searching for a reason why I’m 37, so young and prisoner to a failing body while my beautiful family grows on without me.

Now time seems stagnant. The hours tick away slow here but go they do and I recover, tempered by the slow progression of health – two steps forward, one step back. So I fight for progress, taking deeper breathes, closing my eyes and blowing out the trauma until there’s only peace.

I know it’s a miracle I rise again. And rise I will from a bed I wasn’t supposed to; into a life I’ve defied the odds. But still I know my mission is not done; my lessons are not yet heard. I have gifts to give before I’m gone, time still to live.

The Kline Galland Home

On Friday, I temporarily moved into the Kline Galland home. It’s a Jewish assisted living facility in South Seattle with a rehab ward where people like me can come to better. There are all walks of life in here but with its strong Jewish affiliation, I feel a comfort, settling to my soul, that I don’t think I’d feel elsewhere. I also appreciate the Kosher meals, Judaic artwork, and spiritual outreach from staff.  

But truthfully I’m the youngest here by 20 years and most patients are frail, aged, and weakened by the weight of hard years. These are the ones that are better off too. The others, stored on the second floor down institutional hallways, lay frozen in beds or sit slanted in wheelchairs and moan and complain, waiting for a staff member or death to come, whichever gets there first.

Unfortunately, though, I wait with them and wonder when my time comes. You don’t come this close to a shave without looking back at what could have been. I’ve improved by life spans in a week but I can’t help to find doubt and discouragement down these lonely hallways at the end of time — the incandescent lights offer the same glow, and I can’t steal that image of an old lady chained to a wheelchair calling for me to help but me looking bewildered, and then finally relieved, or off the hook, once a staff member lightheartedly sidesteps her pleas. She must sit there often, daily even, asking for help beyond what can be done for her, a help we all want but one that never materializes.

What can I offer you lady? My breathing that’s improved each day since beginning steroids has stalled the last two nights and I’ve woken in a dizzying whirl where air is short and I sit up straight, suck air and race through thoughts to catch that elusive breath. My heart beats to a worrisome place I’ve searched before in panic attacks last week. But in a minute it’s over, and I’m back to recovery, back to sleep, and back to dreams of getting better and out of here.

Pugs and Drugs

Change comes in leaps and bounds. A year or two or ten come and go and it doesn’t add up to what the past couple weeks signifies in the world for our family. But then again for all of 37 years old I’ve seen this planet turn upside down once or twice already and know that change can be discombobulating, sometimes with the need to reorient yourself and reevaluate all you’ve known.

Fortunately I’m progressing every day, getting physically stronger and recovering at each turn from this latest crisis. Tests showed no sign of infection so the consensus is that the chemo I’ve been on has led to the toxicity in my lungs. The medical team here at the University of Washington has been excellent in my care taking the treatment in stride while dealing with a situation most of them have never seen before. To combat the toxicity in my lungs they’ve administered a healthy dose of steroids. I’ve gone this week from days of blur where I couldn’t remember a thing to hospital boredom that can be just as delusional but much healthier. In this process, my need for oxygen has steadily decreased, while my strength has increased to the level that I participate in physical and occupational therapy.

And today we held a family meeting with a large care team present as well as Kim, my brother Marc and sister Shauna, and in-laws, Kate and Henry. Picture five or six professionals, from an oncologist and a pulmonologist to a social worker and a palliative care doctor, along with my family circling my hospital bed as we discussed revised health goals and my current objectives. It’s a much larger conversation than I have the bandwidth to cover tonight. And there will be other posts to explore the implications of all that was said and some of which wasn’t. The gist, however, is a realization that I’m moving from a state of trying to cure my disease to living out my remaining days the best of which health and Hashem foresee.  It means choosing not to resuscitate in the face of another crisis if such a situation occurs. We also are exploring hospice and other end-of-life care, and I’m weighing those choices with being a husband, father, family member, friend, etc. I see all that I’m losing but I’m aware that there’s a chance for tremendous growth and love in all of us through this process.

Meanwhile, the short term plan must materialize, and that involves going to a care facility in the next couple days that can manage my current needs in terms of oxygen, medicine, and physical therapy. There’s no telling how long this process can run but it’ll be good to move on from the hospital. Mmy end goal is to get back to the baseline I was before we began this chemo. This means that I can independently care for myself without need for constant oxygen. I do know that I’ll be on drugs, yes the steroids, for a couple more weeks and my oxygen is down to the level that can be managed easily at most facilities. With perseverance and strength and these drugs I hope to be home in the next couple weeks.

In another tragic development that many of you might possibly have heard of and of which shook our world so dearly, we lost both our pug dogs this past week to their own illnesses. Sunday while Kim was at home with the kids and her parents, Sally, our pug of 12 years went into cardiac arrest. She died on the way to the veterinary ER. Sally’s always had worse health but Izzy, as I wrote recently, suffered with pulmonary issues of late. She didn’t last long without her companion of 12 years. At 13, the older, wiser Izzy missed her younger, sweet soul sister. In one day, she endured more than a dozen seizure like spells. Lethargic, confined to the couch, and three days after Sally died, we put Izzy down.

Before we had kids, we had these pugs. They initially formed the basis of our family. We took them from Seattle to Baltimore and back. Kim and I spent weekends snuggled on a couch with our pugs firmly fitted into our laps. They’ve lived a good, long life, never forgoing an opportunity to cuddle up in bed or on a loveseat anytime to say thank you or remind us the love that these warm blooded animals shared.

Believe me, the timing of this is not lost on me. It can’t be worse on so many dimensions. The kids and Kim, just as they are questioning everything, have to endure this untimely sting. And I didn’t even get the chance to say goodbye. I’d like to believe that they gave their little hearts to make mine stronger. And just in thinking that, they have in some small way. I’m getting better. I’m fighting on with these creatures in my heart. And as a friend said, she sees how they might have cleared the way for us to focus as a family on our current situation just as I think they’re clearing spiritual space as well to make room for our growing family needs. It’s a beautiful thought that they were unselfish, loyal, sacrificial to their master family to go together to that great doggy playground in the sky. And they wait for us to bring them a cookie and hold them lovingly in view of the world we’d snuggle up to and watch.

Sunday Night

Today Josh was moved out of ICU to a general care floor. His heart rate is much lower and he is requiring about 40% oxygen from the mask.  His job is to rest and let the steriods help the toxcicity in his lungs. He is sitting up in the chair to eat.  Tuesday the doctors will meet with us to reveiw where we are at in this marathon.

Thank you for your prayers and support.

Shabbat Shalom

 

What to write after the fall? I knockin on heaven’s door that’s for sure.  With each passing hour, without conclusion, my heart raced faster and my oxygen deteriorated. 

It came too suddenly.  I was going to restart my memoir. But I quickly had to gauge the severity ofthis.  All those boxes withlove notes to Kim, Jacob, Sam, Sophie, friends, etc. were not complete.  Oh my G-d this was it.  I said goodbyes to people I walked this world with.  I had to say goodbye to my children. 

 

It’s one time I’m proud to be called a liar.  Though I’m not through the test yet.  I still can’t breath for any amount of time away from the apparatus without oxygen cranked up in my face.  But I do feel better.  It all started two weeks ago with a pneumonia. It grew slowly at first.  I was winded going down a flight, had to rest after getting the mail but I plugged on, attending kids baseball games, reading hour at night with the boys, tea time at 2pm with Sophie.  I was living as if it was our regular life but I knew if was not right.  Thursday I called about a worsening of my condition.  Friday they took xrays and prescribed a new antibiotic and we skipped doing chemo.  At home I took to using my oxygen.  But I knew my limitations.  I couldn’t carry Sam up two flights of stairs when he fell asleep for family movie night. The the day of Sophie’s party I wasnted to see the people I love and enjoy.  I wanted to see my daughter happy – the life of the party, her the princess, the boys prince charmings and me and Kim, King and Queen.  And so it was for two to three hours, a reprive from the hustle and bustle of rapid heart fluxuations and severe shortness of breath. 

 

I was getting ready for the hospital. Sam was on the bed asking questions. Jacob in the shower, Henry hovering nearby and Kim saying "Let’s go!"  My heart went zoom, zoom, zoom.  I said one second and raced outside in the fresh air. I held the rail hunched over like I ran the hell out of a 100 yard dash but came in last.  I has to pee so right there off the deck seemed as good as any. That was the first of when the many panic attacks started in.  I thought of even calling 911 to get us to the ER that is how badly and quickly this had progressed. 

 

Kim and I picked up Marc along the way. I grabbed my portable oxygen tank but didn’t realize until we go Marc that it was in "off" position.  I drove there with two of the most important people in my life – my wife and mate since 1991 and my brother.  Every breath was a struggle, a kick in the gut a moment before a panic attack where the oxygen falls and my heart races.  We were admitted that night.  They put me on a new antibiotic, took an xray of my lungs and decided that the pneumonia was getting worse. The plan was to do a CT scan, followed by a broncoscopy.  By Tuesday evening Kim realized how bad it was.  She stayed the night and had hallway conversations with the doctors. Cried in the arms of me and her father. She was more beautiful then ever and more in control too.  She was organized a house of 6 people, coordinated friends alerted family, saved my life.

 

I say that but we are not through the forest yet. Marc sleeps soundly in the makeshift bed beside me. That was less darkness than light when the doctors showed my lungs to me on screen.  We talked of advanced directives, meaning if they have to intubate me it might leave me in a coma.  I can’t recall at this point what I said last but it didn’t matter. The procedue was a success. they grabbed samples of tissue by going through my nose. My brother stayed on to wach and coached me through it. Kim came and went through an afternoon that will remain a blur.  Our dear friends were there from my childhood friends to the families we formed a havurah with ten years ago. 

 

Today my job is to rest let the medications try to reverse what is  going on in my lungs.  I will celebrate Shabbat with the kids shortly in my room which is now filled with pictures of my folks, the kids, our wedding picture and the 1000 cranes!  Thank you for your emails, your comments on the blog and your continuous prayers.

 

Update

Josh was moved to the Intensive Care Unit this morning.  The doctors proceeded with the broncoscopy which went very well without the need for

use of a respirator. He is being treated for both possiblilites of either a viral infection or toxcity from the chemo which once the results are in from the bronc we will narrow down which approach is needed. It has been a very emotional day filled with very hard decisions for us to make. Jacob, Sam and Sophie were brought to the hospital at 7:30 this morning in order to see Josh and talk to him prior to any further treatment in case he would be unable to communicate with them (if sedated, etc).  As of this afternoon he is resting and his heart rate is way down from the last three days and he is getting the proper care he needs at this time from the ICU team. Please keep Josh in your thoughts and prayers and give our kids as much love as possible as they face days that no child should have to at such a young age. We would like to request no visitors at this time.  Thank you for everything you do for us everyday.