Joshua's space

Kim and I spent a wonderful three days, two nights at a resort on Hood Canal without kids. We desperately needed the time together based on all we’ve been living through. It’s funny but since the kids left, it took us a day or two to get reacquainted with each other. We’ve come so far together that it’s a shame how quickly we can forget one another.

Fortunately, it doesn’t take long to find each other again. And there’s so much beauty in rediscovery. I remembered the laugh of a friend, the arms of a protector, the skin of a lover. We shuffled around the manicured gardens of this resort, walked the long dock where patrons parked their exotic boats, ate the rich and over priced food, all the while not caring about the cost of it all, because we were together. Instead, we celebrated the sensual weather, the blue bed like waters, the long legged trees and bare naked mountains, for we had each other.

So what did we do? We rented bad movies and snuggled up on their small couch shuffling cards and discussing life – gone, here, and not-yet-told. When we left, we were once again Boobalah and Yoshinah, a couple with a lot more living and loving to do.

Oddly, we first came together right about this week eighteen years ago, the Hebrew number for Chai or life. Yes, 18 is a lifetime, for me it’s half my life spent with one person. I couldn’t have found a better person either. And this time of year will always be a magical time of change and perseverance in my life.

For the other anniversary to remember is that this week marks five years since the amputation of my left hand. Cancer dates seem to stick in the mind as memorable as anything. Like deaths, births, anniversaries, you remember these dates because they mark so much significant change. You prepare for the date. And like the march of time, it so certainly comes. Yet, you’re never really prepared for the next day, and every day after it. For nothing is the same, everything is forever different.

Our good friend Laura surprised us tonight with a corkboard to hang in the family room. This isn’t any corkboard, though. Tacked on it is the love of a community of good people.

 

Laura, who we’ve both known since we were young, came up with the idea and solicited help from friends and friends of those friends, all people who knew us. The idea was simple – give the Isaacs gifts they can use to help them during this time. Simple but brilliant as tacked on the board are memories we will create and enjoy now while my health is relatively good but stress still gets high.

 

The gifts range from Starbucks cards to passes to Seattle attractions like the zoo to personal favors at our disposal like coupons to take the kids on a boat for the day. There’s far too many fabulous treats to list here (but we will be sending our thanks to each of you). It’s like each day this summer we can do something different and fun, just check the corkboard and grab a card.

 

If I didn’t know this already, it reassures me that we have a great summer ahead of us. Post that on the corkboard – I’m alive, doing well, and we got some good living ahead of us!

 

I can’t thank everyone enough. I’m grateful for our community and our friendships.  

 

Since we’ve been on this cancer journey I can’t remember the last time the sun shined so bright for us. Getting a good scan really equates to being able to take a long and deep breath where you do not need to inhale again for six weeks when the next test looms.

Instead, we can enjoy the fruits of our labor. We get to watch the flowers bloom, the grass (that sticky herbal kind) grow, and make memories even as they’re already quickly occurring.

We’ve hit this season of lush change where everyone becomes more a part of who they are and who they are going to be. From here our summer officially goes into overdrive.

It started Friday afternoon when we dropped Jacob off at the bus to take him to overnight camp. He commenced a ten day journey where he defines without his parents who he wants to be, how he’s going to behave, and what attitude he’ll take with him. All we can do is hope that we’ve given him the foundation and skills to succeed on this adventure. Whatever the case, he’ll come back to us more of a man, more of an individual, someone who’s found himself on his own. It’s a big step in child development but one we’re confident he’ll shine through. Heck, he went for four days last year and loved it. The hardest part will be prying all the good stories out of him after he returns – “no TV until you tell us five things you liked.”

Then this morning months or even years now of running was put to the test. And Kim actually flew instead. She completed the Seattle Rock and Roll half marathon in less than two hours. It’s something like her fifth marathon, including one full. She took to running after my second occurrence and hasn’t stopped. It’s part of her now. And she thrives off the culture, the challenge. Her team, named for peace in the house used the slogan ‘Run like a Mutha’ (if the mutha don’t get runs in there’s no peace in the house), paced themselves at a personal record speeds, and they did it! Congrats Shalom Byet.

Later this afternoon our nanny Bev took Sam and Sophie to see her family in Arizona. The three of them are like an adorable team. Somehow, Bev manages them like she manages our house, with perfect harmony despite the frequent outbursts. For them it’s something special and they are all so close. For me, with my parents gone, it’s nice to see someone I know and love doing the grandparent things with them and knowing they’re in good care. We drove them to the airport and walked them to the gate. I was clearly the saddest of the bunch. I’m going to miss my little playmates.

But this gives Kim and I much needed time together. I have to thank the heavens for this – to be in relative good health under beautiful northwest skies with my soul mate for an extended period of time where we can just focus on each other. Wow! We haven’t had time together like this in four years. It’ll be good for us to create our own memories, reconnect, and go deep with each other considering the terms life has given us. As always we have much to talk about – some will be heavy, some will be random, some will be dreamy, but all will be with my lover and so all will be right.

And, of course, here are photos to document the moment. Starting with snapshots of the boy leaving home for camp:

 

Mom got a little teary eyed on the way to the drop off.

 

It's the same camp we met at as camp counselors.

 

The boys looking so hard.

 

There he is. Damn he's good looking. Some say he looks like me :)

 

Brother Sam didn't miss him for long. He and I stopped at Chuck E Cheese on the way home and worked on our father/son gambling skills.

 

We spent dinner with the cousins, posing for the camera.

 

The treo arrives at the airport.

 

Now it's time together with my sweetheart.

I certainly did not think I’d be blogging about Michael Jackson tonight. I planned to give an update about yesterday’s doctor appointment, which went so well, and highlight my plans going forward, which is to start my fourth cycle of Sutent at the lower dosage on Monday and test again with a CT/PET in six weeks. I wanted to end the post soaring, as my night did yesterday, with the hip, inspirational and spiritual sounds of Matisyahu ringing in my head. Seeing him in concert moved me to commit more to my need to make another film like MY Left Hand, and, blessed with stability, the belief I can see it through. But those topics can wait a moment. Instead, I want to say a few words about the King of Pop and his wonderful yet ultimately weird existence.

Considering the events of the day, for a blog like mine, even Farrah Fawcett’s death might be more appropriate to discuss because she died of cancer. And in terms of world events, the uplifting images from Iran, seeing the young and so many people stand in opposition to these enemies of my people, and then the sad, disillusioned crackdown of these demonstrators by ruthless leaders means more for me, my kids, and the countries I love – USA and Israel – then the death of a person who became a caricature of himself. Yet, I’m completely captivated by the news of Michael Jackson's death and nostalgic for his music and the enduring images that surround him. 

Any American who grew up in the eighties and came of age in the nineties can’t deny the influence Michael Jackson had on them either directly or indirectly. I wasn’t a fan of his music but I also can’t say I disliked it. Rather I just had other musical interests. When Thriller hit it big – this was my first real intro to Michael despite his Jackson 5 success – I was listening to punk rock through peer pressure and my own yearning to rebel and be different. Names like The Clash, Black Flag, and the Sex Pistols loaded up my tape deck and early version IPod, a.k.a. the Walkman.

But I still took note of Jackson. I marked my calendar to watch MTV’s world premiere of the Thriller video – still is one of the best music videos ever made. I caught him on grammy night winning award after award and watched him parade around with Brooke Shields and that little dude, the one not from Different Strokes. Hell, I even sang along to ‘We Are the World’ and cheered the Live Aid concerts and subsequent relief work. I too laughed at Weird Al Yanovik’s parodies, such as Eat It. For a few years in the 80s Michael Jackson was everywhere. Even his hair catching fire became breaking news you had to take note of.

During those 80s, my musical tastes grew and I came to love rock and roll. I discovered the stoner music of the sixties and seventies, and shouted my approval for the defining sound of my generation – Seattle’s own grunge. By then it was the early nineties and Jackson started to live up to his freak reputation. His many plastic surgeries begged the question, what for? Then there was the first allegation of child molestation. Did anyone believe the guy with a big playground of a house called Neverland Ranch and a lust for celebrating with young boys was innocent? He paid $26 million to settle before going to trial and the debate raged among my friends and I if we’d let him touch our privates for that much money.

Just a joke folks.

Yet, Michael Jackson wasn’t. He was more like a car wreck where you couldn’t stop rubbernecking. The guy made one weird move after another from marrying Elvis’ daughter to their subsequent divorce, then remarrying and having children whom he literally shielded from the public view in strange garbs, to the dangling of a third child from a hotel window. Btw, what did he name his son, Prince Michael?

By now my life grew into marriage and responsibilities. I began having kids of my own. He danced on top of a car during another molestation court trial, which seemed endless the number of sexual abuse charges brought against him. About that time he did that famous TV interview where he admitted to sharing the bed with little boys. “It’s the best gift you can give someone,” he said or something like that in a high pitched unforgettable voice. And people wondered what planet he came from.

But he obviously came from ours. If anything he could only be created here in America, and could only exist in the time period he came of age in. There won’t ever be another Michael Jackson. His musical influence is legendary. His feats untouchable. He broke racial barriers that one must admit in some way paved the road for Barack Obama to be president. Yet he also broke other barriers like buying the elephant man’s remains that makes me shiver how I could even draw a line between him and our president. No, he went alone on some of his extremes. I guess at some point when you get to be that popular, that gifted and sought after, you reach the top and find there’s no one else there. Wealth couldn’t buy him the self-confidence he needed when he was frightened but it bought him the Beatle’s music.

In his loneliness one might understand his eccentricities. Pundits say he surrounded himself with the wrong people. His advisers never had his best interest in mind. Those who defended him in court described a twelve year old boy trapped in this medically altered body. Whatever the case, if you credit him for the music you must also credit him for the downfall that ruined him. They’re both parts of the same American story – one so outlandish it proves truth is stranger than fiction.

I don’t think there’s any lesson here. Just more rubber necking. We’ll undoubtedly have weeks of news from his legacy to his autopsy report. Just as in life, his death will be a spectacle. I mean how do you bury a king of pop, and who shows up for the funeral? I’ll steal a glance at my wife’s People magazine for that one.

Is there something for my kids here? There is his music for them to discover. I think they'll enjoy watching Thriller. But it’s not like they will ever be like Michael but I guess if you guys do become mega-super-world-renowned stars try not to be so eccentric. Keep a little of yourselves. Watch what type of people you surround yourself with. Have a set of values/principles to stand on, both when life is good and puts you in front of millions of adoring Chinese fans and when it's not and you find yourself in the counsel of Johnny Cochrane.

Anyway, at some point this summer we’ll be at some party buzzed and full of life. ‘Billie Jean’ will come on and we’ll all hoot and holla, try moon walking or flashing the glove, and dance the Thriller steps. His oddities, his death will just add to the allure of the song, and whatever your connection to him – die hard fan or casual observer or disgusted opinionated right winger – the music will move you. It undoubtedly does, for that’s what he did so well.

Even the pneumonia looks like it cleared up. Will write more later, off to the Matisyahu concert with friends.

Creeps in this petty pace from day to day,

To the last syllable of recorded time;

And all our yesterdays have lighted fools

The way to dusty death. Out, out, brief candle!

Life's but a walking shadow, a poor player,

That struts and frets his hour upon the stage,

And then is heard no more. It is a tale

Told by an idiot, full of sound and fury,

Signifying nothing.”

 

n  William Shakespeare

Tonight I’m anxious with thoughts unclear. I toss and turn on a bed of broken yesterdays. Did I tell you how sweet my evening was? My daughter, a flirtatious gifted child from the world of laughter, tickled my senses with her wit while one son, the one burdened with fate, amazed us with his strength of body and mind while my other son, a clown brought before the king, came prepared with jokes and amused us all into the holy hours of twilight when their bedtime called and I was left with my queen huddled together before the morning of decision.

I wish I could be more poetic, more complete in my tasks and accomplished in my life, where I could say ok, tomorrow will be what it will be and it will mean something but whatever that something is I’m prepared for it. In truth, I’m shaking uncontrollably. I have so much more to give, so much more I need to complete before the toll bell rings. I’d even forgo my duties just to sit passive and let the years roll by, so I may be a spectator to it all.

I do not agree with MacBeth. Life does not signify nothing. It has to stand for more. But only in the dreads of human emotion does our fury really turn to poetry. In the bowels of depression do we really seek to define the beauty that eludes us. Brains toiled in the fog of unknown have produced some of the most clarifying works of art to describe our existences here and give meaning to the tale.

What happens tomorrow happens, that is certain. Our response is what is unknown. How do we go on? Why do we go on? Cause we must. We must go on for the kingdom is not complete. Others must learn how to build it. We will teach them the way.

Fact is I’m stoned and a little bit tipsy from red wine right now and so I get overly reflective and lost in this bright light of unknown tomorrows, starting with June 24 and my next CT scan. In the past, I’ve described each scan as a mini Jewish High Holidays where I pray to be written and sealed in the book of life if not for a good year than at least until the next scan. But each of these scan days always seems to hold some surprise, and whatever the case the 25^th will feel much different than the 24^th did. Those things I know for certain.

Tonight we sang Havdalah, the prayer service that ends Shabbat and begins the work week. We said goodbye to the sacred Sabbath bride and prayed for a good week to come. My scans laid heavy on my mind as I passed the wine, the spices, and the flame of traditions onto the children.

So now comes Father’s Day. For at least a day, I’m told I can have it my way. So I want tomorrow to be meaningful. I want to go see my father. I haven’t visited both my parents in awhile. They’d like to hear about the new deck. In the afternoon, we get together with family, in peace, gleaming in our fortune of time. That night, I see it all a little different. I want it to be Kim, Sam, Sophie, and Jacob. I want it to be a little bit about each of them and me.

We, just the immediate us, gather around a camp fire, my promises and pledges burning through the night. Each of you takes turns sitting on my lap while I bestow my blessings, for this is my kingdom.

Kim is my queen, so beautiful and glamorous, her throne holds the real power but I give her her royalty. For she always carries herself so dignified and graceful that she is a gem. But may she have the royalty to endure and still lead, grow into the leader she is meant to be, and so I give you that confidence to be the leader the world needs.

And Sam, may we forever play a game together. You make up the game in your creative brilliance, with irrational rules and silly outcomes. But somewhere, this game goes on forever and you carry it wherever you go, knowing I’m always there for you, always rooting for you, challenging you, laughing with you, and comforting you. There will come a day you won’t need me there. You’ll gain the confidence to travel on with destiny; while I shimmer with pride and watch you become a light of your own. May your light bring us joy, hope and justice.

Then there’s our dance Sophie Tova. We spin round and round. You giggle relentlessly. I know I’ve been touched by an angel. And like angels dance, may your dance bring out the best in others, turning away ill thoughts and bringing forth peaceful ways. Your smile and charm and persistent will get you what you want, may it also be what you need to grow a family and make the world a better place.

That leaves your blessing Jacob. We got in a fight tonight. Doesn’t even matter what it was about, for it really wasn’t much, you broke down with friends here and I thought you should have a timeout. Believe me, it hurt to scold you and I saw your anger. But with fighting, the best part is always making up. And I loved that moment as much and even more than I despised our fight. May you take all I’ve given you and have the wisdom to choose what is right and proper and use that to bring yourself happiness and a life filled with purpose, a mission to save lives, lead people with all your powers of healing.

Before he started the pile looked like this (note: the photo doesn’t do it justice because the back two rows are hidden):

 

 

 

Then this guy came along.

 

 

Now it looks like this.

 

We’ll be burning wood for the next five winters thanks to the he-man efforts of my friend and part time Paul Bunyan impersonator, Matt 'the' Wolf. When asked by the deck workers how much he charged, Matt said, “That's not why I'm doing this – hell, he’s got one hand.”

Fortunately, he liked the work and gave it 100 percent effort. No slacking or butt sliding but some butt crack showing.  Yeah, ok, he endured harmless teasing and Sam's relentless and random questions. And must have sweated off five pounds, while treating blisters and soreness that prevented him from holding the phone up to his ear after the first day of swinging.

Matt and I go way back to high school together and reconnected this past year when he moved back up here from SF. He's a close friend, who always brightens the mood during his frequent visits. I gave him a little something/something so his efforts weren’t for naught. Still, it didn't equal the sweat equitty he poured into the wood chopping. He did it, like so many others who've stepped up to help, because it felt good/right to do.

He'll be compensated in other ways. I told him during those cold fall days where it gets dark at four o'clock, come over with his baby daughter (he's expecting in less than two months) and we'll put some logs on the fire and watch the Seahawks play for the postseason.

The contractors pounded in their last board around noon today and with that our new deck is complete. It is a thing of beauty for it represents more than a home improvement project but a vision of transforming the past into the new present, and making it better. Besides being well-designed and built, and a huge improvement over what was, it’s an opportunity to dream.

I held memories in that old, rickety deck they tore to parts last Monday. As a child, I jumped the six plus feet from the deck onto the grass below; today safety regulators would never approve of a deck that any seven-year-old could slip through, hang on the edge, yell ‘attack,’ and leap over concrete slabs onto the grass ready to defend my home and family from the evil that broods outside my imagination.

No leaping now. There’s a stairway there that leads to a paved pathway, rebuilt and re-imagined, and to a grassy section where a ramp leads us onto the trampoline. There are also handrails six inches apart and a baby gate for Sophie. The deck itself is trex, a modern day composite that requires little maintenance for the next 20 years. It adds twice the room our previous deck held, enough for a band and an open dance floor. Plus we have two other older decks made much more accessible by wide, amphitheatre type stairs coming down with room to pass one another or even sit on. Our whole yard is opened up with the timely removal of the trees, inviting us to go explore and interact with parts of the large acreage that seemed hidden before.

And yes, here comes the deck/backyard parties – the chance to make more memories. I see a new dining experience, birthday party celebrations on hot days, and comfortable conversations at night under the stars. The kids will have play dates, and build secret forts. We get more beautiful gardening spaces.

Of course, underlying these visions is hope, health, happiness, a confidence in ourselves and the future. Not a simple thing for any part of life to bring you but that’s the risk anyone takes when trying to improve the world. Perhaps it's even more justified under the uncertain circumstances of my health. Yet, I pursued this anyway and orchestrated the whole deal. It gives me a good sense of accomplishment, like you get when a project goes well at work. For that alone, it’s worth the investment we put into the deck. But I get more out of it. I see a piece of land that was my father’s now in my hands. A lot he cared for, a house he worked on, and land he toiled. Bright eyed and young, he came here with a house full of children roughly the same age differences as mine. And he made it into a home as I have done. A place where we feel secure and loved. That is what I’m dreaming I can accomplish for my kids.

Perhaps I’m getting spiritual/philosophical here when really I’m being material. It’s just a deck. As I built this deck right now, I’m following blogs of other patients battling this disease and hearing that their journeys have taken unfortunate turns. Should I be remorseful that I’m able to accomplish this when they can’t? I have feelings of guilt, of fear, of wanting, greedily wanting to do everything I can while I can so that I enjoy life the most.

I know what these other patients would say, ‘make the most of your life while you’re healthy enough to. Enjoy every day and look to make special memories.” And that deck is part of it. No I’m not one who greedily wants some life I don’t have. Instead, I greedily want this life I do have. By building this deck, cancer seemed secondary on my list of concerns. I could wake up with other thoughts on my mind, and tomorrow I have more memories to go make on it.

This deck built under the extreme turbulence of my life, is, in the end, just a deck. But it's also so much more. You’ll see from the pictures but they are deceiving. Better come party and see for yourself.

.

 

 

I’m reminded of that saying tonight as I looked out at Thornton Creek. I always make a point of walking the dogs to a bridge over the small waterway, peeking just long enough to get a whiff of the damp air and see the dim street lights reflected off a glassy surface before the creek turns and chops its way over rocks. It reminds me of my youth. For just a moment I’m suspended over the passage of time, connected to the great river that runs through everything.

People often ask what it’s like to live in the house I grew up in, be in the same neighborhood I trudged through as a child and witness my kids making it their own. It’s like the saying goes though: this is not that same river of my youth. Times have forever changed. I don’t think my kids could nowadays put on old sneakers and walk six or seven miles up that stream past private homes and community parks to where it eventually tunnels and gets buried underneath city concrete like my buddy and I did one endless summer day. But maybe so. Maybe even I could walk it with them and recapture a little of quaint Seattle that seems lost to big city aspirations and hardened, recluse decisions.

Yeah and these days I might even have the strength to do it. That’s how good I’ve been feeling lately. My absence from blogging is just a reflection of good times, days gone by in relative health and security where my life feels like it will last as long as these June days last – into a deep, northern running light that won’t really disappear before the eastern sky opens up with another day of wonder.

Today the kids stepped-up at their school. Jacob spent an hour in third grade, making the walk up the hallway to his new classroom for next year. And Sam visited the kindergarten, invited by the school along with his new classmates to explore their next big adventure in academia and conformity. I joined Sam, who remained positively giddy and excited about the whole experience. We made a sunflower display, where we can plant the seeds and by the time it flowers he will return to this classroom for the start of the school year. He’ll be six by then and I’m comforted in the fact that he’s already set in who he will be. So much is planted in him by now that will blossom and bloom in time. I forget which religion it is – well, it was actually told to me by a chaplain friend upon hearing my diagnosis – but whoever it is, they say give me the first five years of a child’s life and they can make them into who they will be. She said it to comfort me at the time and I appreciated the gesture. I even believe it, desperately so. Meanwhile, Sophie battles a little bug or something. Sweet girl, so sad to see her suffer in any way even if it’s a twenty-four hour bug, and even though she hugs a little longer and loves a little deeper. But I often think these kids go through a growth spurt as soon as they bust out of the doldrums of minor illnesses. And that’s just her, growing into herself, and that’s these days going by so fast as time marches on.

As for me I finished my last Sutent pill, cycle number 3 done. For this one I skipped the hand blisters and many of the other troubling side effects of the first two cycles. I believe that’s thanks to the lower dosage. I do hope that it’s also containing the tumors. We go on June 24 for a CT scan. I’m skeptical as to what that will show because I don't really think we'll know much more at this point. As long as nothing is vastly different one way or the other, which I believe will be the case, then we’ll have to keep going. But a tolerable dosage with minimal side effects and tumors that are contained is victory in this game. And I’ll take that for sure.