Camp Samoset

Wednesday, November 30, 2016.   When my good buddy Shai Waisman suggested that I keep a blog at the “commencement” of this entire experience, I was hesitant.   Shai thought it would be a way to keep people posted (per the original entry that Shai drafted).  He had it designed, came up with the titles (including “Sussinator,” which I think I just fully appreciated it actually says), and left the rest to me.  I was in the hospital for a few weeks and thought a lot about it.   And then it kind of just happened.  [Thanks again Shai; I know you know how much I appreciated this.]

I wrote the first night I got home (May 13).  And then almost 30 days in a row.   It was a good escape, cathartic and helped fill my day when sleep (because of medication) was very hard to come by and lots of thoughts were running wild.  Like many things in life it slowed down.   That was a function of a lot of things.   Including some tough times….some time to reflect…finally giving in to television…intermittent medication (like now)…not sure there was anything to say….not wanting to say anything.   The list can and does go on.   But at the beginning, when there was a strange euphoria notwithstanding being diagnosed with something associated with pain and fear, with so many people from so many different worlds coming together to show support and love (as I have been so lucky to have throughout these nearly 8 months and my entire life for that matter), there were places and things I thought about taking the time to write about because those places or things were/are so important to me.   One of those places was Camp Samoset in Casco, Maine.

Today seems to be an appropriate day to make that happen and properly reflect.   Unfortunately it is bitter-sweet.  Earlier today, I drove to Boston with my brother to attend a memorial service for Arthur Savage, who owned and directed Camp Samoset with his wife Barbara for 21 years.   Arthur passed away the night of Thanksgiving (after spending his favorite holiday with his family) following a one month battle with a very aggressive form of kidney cancer.  He had just turned 80 years old.

Arthur and Barbara had lasting and indelible impacts on so many campers and counselors over their years at camp.   My brother and I were fortunate recipients.   Fortunate, in the first instance, to be able to spend two months each summer as kids running around playing sports and participating in activities in an environment that allowed you to be you.   Without the pressures attendant to the other 10 months each year.  It was never lost on me that this was a privilege.   We were even more fortunate to stay on as counselors and learn things that we no doubt remember and use today.   Lessons about life you just could not find at a summer job or internship.  Sounds cliché.  But it is true.  Those were years that helped define us.   [Earlier today, Drew attributed his organizational skills to being in charge of dozens of campers during day trips to water or amusement parks; to this day Drew is still amazed that Arthur and Barbara left him in charge of not only all of the cash, but making sure all the kids were accounted for on the bus both to and from the trip.   So am I.   He was probably no older than 17 and needed a chaperone in his own right.   I had some more “meaningful” experiences in my humble opinion, but as I told Drew today, to each their own!].   All these lessons and experiences were made possible by Arthur and Barbara.  They were directly responsible for the teachings or the putting in place of the right people to serve as role models and do the teaching.  I can to this day recount dozens of moments and conversations, several of which I close my eyes and can be transported to the scene.

This was always the case and it was on complete display today when Barbara and Jackie read some of the email messages that were sent over the last month when Arthur became sick and was no longer able to speak on the phone.  The messages were amazing and such a tribute to the way Arthur (and Barbara) conducted themselves and touched so many.   I last spoke to Arthur in May (from 1-3 am, when I first got sick).  We had not spoken in a while but we caught up quickly without missing a beat, as is often the case with camp relationships.   I only wish I had properly thanked him for everything at that moment rather than through an email just a few weeks ago….

Arthur and Barbara are also the parents of Jackie and Rob, who I literally grew up with at Camp Samoset.   We all met in 1989 (my first summer was 1988; the Savages bought Samoset in 1989).    Rob and I were in the same bunk in 1989 when we were 11 years.   We were not best friends at first.  In fact, we weren’t friends at all.   Rob switched bunks until we were 14.   Bottom line:  I was a jerk and gave him crap because his parents owned the camp.  Things started to change as we grew up.   And during the five years we were at camp as counselors together, getting opportunities from Arthur and Barbara to help run major functions of the camp as we got older, we were inseparable.  This included my sole reality television experience in 2000 (the summer we graduated from college and before I went to law school) when Rob and I–because of our long time camp experience and relationship from camp with Rhett (the “original” )–were selected to be counselors not at Samoset, but at a camp in New Mexico that was featured on the television show “Bug Juice” on the Disney Channel.   [Another story and unbelievable experience in and of itself.   No surprise, Rob (the current actor living in LA) was selected to live in the bunk with the kids and was the focus of the show; I lived in a tent alone and served as the Director of the Boys’ camp (looking for some good cameos while I studied for the LSAT)].  A great experience, but it was not Samoset.   We did, however, bring many Samoset traditions to Bug Juice and put them on full display for 14-year-old kids in certain parts of the US (who watched the show, together with our families and my new girlfriend at the time, who turned out to be my wife.  And we didn’t get married because of my TV career; Jen would come over Sunday’s to see most episodes, most of which I appeared in for 30-45 seconds.  No DVR in 2001 and she usually wasn’t paying close attention).

It is not a coincidence that I have maintained a close relationship with Rob and other people from Samoset for nearly 30 years.   I always will.   It was an important and defining time in some of my most formative years (10-21), and the lessons and experiences are consciously and subconsciously with me daily.   I met some of the best people I know at camp.   Including the Savages.   It is days like today where you really appreciate opportunities that not many people are afforded.

Thank you Arthur (and of course Barbara, who I will continue to thank as I should have been for a long time) for everything from the timeless lessons to my friendship with Rob.  Thanks for always letting me be me.  You guys were and always will be family.   It is pretty amazing that so many other people, from so many different places and backgrounds, share the same sentiment.  Too often we do not get to say thank you until the end.   I realize it doesn’t have to be that way…..

Barbara, Jackie and Rob.   Thinking of you and so grateful to have you guys.   Thanks for everything, including sharing Arthur with all of us.  Rob said it well today.   We are all better off for knowing Arthur, who was truly one of a kind.


I was truly honored when Jackie read part of the note I sent to Arthur (through Rob) on November 17th.  It was obviously personal and something meant for the family.   But as Jackie read various messages from so many people who had reached out, I was so comfortable and proud that people could hear out loud how important this family had been to me.   I don’t need an email reminder of that.   But for those that knew Arthur and the Savage family, I am thrilled to share because I know you might be thinking and feeling the same.

11/17/16

Rob.   Please get this to your Dad.

Arthur — I heard the awful news from Rob today.  And I understand that email is the best way to get in touch.  Too bad as I would have really enjoyed another two-hour conversation in the middle of the night; it was great to catch up with you live over the summer.  We cut through the bull sh*t in about five minutes and got to the important stuff; how big of a di*k I was as a 10-year-old kid; the many times you should have fired me; and the unbelievable friendship that I have with your son (this is soon to be 30 years old).

You and your family have had a massive and incredibly positive impact on my life and the person I am today.  I am sure it sounds corny and comes at a time when emotions are running 100 miles per hour in thousands of directions, but I wanted to say thank you.   Not sure I ever really thanked you properly or on an unqualified basis . . . Truth be told, a proper thank you is impossible to put in words when you think about what camp means to me…

I know lots of people who were privileged to have a great experience.  And as a kid, I had a great experience.  But it was really the 5 years as a counselor where I learned the most — about myself and life more generally — and developed a special relationship with Rob and the entire Savage family.  Thanks for making that possible.  You and Barb gave us responsibility and I learned so many things that were on “time release” (i.e., I didn’t even realize how certain experiences and moments at camp would come in handy years down the road and help shape the person I ultimately would become).  Those 8 weeks were my favorites 8 weeks of the year.  That was a function of the atmosphere you guys created and your willingness to let us succeed and fail.  And I say “us” because I felt like part of your family and rarely did anything without Rob.  (I still remember when you called me and said you were flying me in for Rob’s 20th surprise birthday party [not 21 by the way because Arthur was truly one of a kind].   Not that I would have missed it, but that phone call and invite meant the world to me.  And I am sure I was “too cool” to say thank you on a truly unqualified basis at the time….).

I don’t use an electric razor often, but I was forced to use one over the last 8 months to avoid infections.  For better or worse, I think of you every time it turns on.  You are walking into the dining hall — a few minutes late for breakfast — with the electric razor fully engaged on your chin.  Then, fast forward, and I immediately think about you catching me in the fridge eating macaroni salad at 1 am.

Thinking of you.  And thanking you for everything.


 

Poetic that Arthur’s electric razor sat outside the memorial service on a table with pictures of his family, grandchildren and camp.

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Thanksgiving Cancer Free

Friday, November 25, 2016.  Thanksgiving has always been one of my favorite days of the year.  For as long as I can remember, I loved that it was a holiday that everyone celebrated. It meant a break from school, football with friends and time with family when you were growing up.  In college, it was a time to return home, get together with old friends and spend quality time with your family.  And while Thanksgiving itself is always evolving (whether it be the location, those joining or the family expanding), the concept stays the same.  Some people return to their childhood homes.   Other people start their own traditions where they settle.   The constant is being with family.   And for me, there is no other holiday like it because it brings so many people I care about together.

Thanksgiving 2016 was all this and more.

After a pet scan on November 3 — where they inject your body with a dye and make you drink gallons of “special juice” (which makes you radioactive for 12 hours), followed by 3o minutes in an X-ray machine (wrapped in a straight jacket so you don’t move) to see if the dye/drink contrast lights up to show cancer in your body — we received the results on the afternoon of November 4.  The email read:

 Hi Josh, I just tried your cell.  PET scan is back and its good:

Continued  decrease in the size of nonhypermetabolic anterior mediastinal mass. currently measuring 3.3 x 1.5 cm, previously 8.6 x 4.8 cm.

What is important is that the left over cells are not picking up any contrast which means they are dead cells.

Have a great weekend.

My first call was to the PA (returning the missed call) to make sure I understood each and every word (and we went through each and every word).   For good measure, I forwarded the e-mail to the resident family doctors (my father-in-law and uncle) to dissect each word.

The clear takeaway:  no more cancer.  The huge mass had shrunk and is now just scar tissue that will continue to shrink and ultimately go away with time.  The protocol I am on is working, will be finished in a few weeks and the three year maintenance plan will follow to help ensure the cancer does not come back.

Hard to explain the emotions that day and every day since frankly.   We were told on the first day by my doctor that “I was going to be OK,” but to say there have not been moments of dark thoughts would be a lie.  In the end, I was hoping (and confident) that this would be a gut check on invincibility and a wake up call to keep things in perspective everyday –not just when something necessitates a perspective check.   And it sure seems we are headed in that direction, which was welcome news to hear out loud…..

So obviously Thanksgiving was a bit more meaningful than usual at the Sussberg house yesterday.   And it was an amazing day.   Notwithstanding my Wednesday pre-turkey day “cocktail” at Weill Cornell (three chemo treatments plus special testing for stomach issues that have been keeping me up at nights), I felt the best I have in weeks yesterday morning and afternoon.  It helped having close friends stop by for bagels in the morning and my entire immediate family in attendance the rest of the day.   In addition to the Nelson’s/Halpern’s (Lenny, Helene, Kim, Justin, Jordan, Brad, Julie (with a little girl on the way in March) and Joey), we had lots of Sussberg’s: Allan, Janet, Drew, Alexis, Mia, Violet and Janet Reichman (Alexis’).  And of course Jen, Jake, Ryan and Brandon.   It was the first Thanksgiving I have had my with brother and Alexis in a long time.   My brother and Alexis, who have a lot on their plate with the twins (who are both doing phenomenally), have been unbelievable supporters over these last eight months.  Just having them, the girls and Janet here was icing on the cake.

Bagels, lox, whitefish and cream cheese in the morning was followed by a few mile walk with my Dad and father-in-law.  We got back just in time for nacho’s (recipe care of Ally Tauber), shrimp, vegetable platter, mini hot dogs, home cooked ribs (by me and Justin with moral support from Brad), and Joe’s Stone Crabs sent over night from Joe’s in Miami.   The ribs were my creation after weeks of watching the cooking channel.   They were actually pretty good.  And there are plenty left if anyone is interested (just not sure how well they will hold up in the mail).  I also stated a new tradition with Jake, Ryan and Brandon.   We made a supermarket run on the way to pick up the bagels to buy the ingredients for the first annual Sussberg Fruit Punch.   I figured it would both be nice for the kids to make something and actually have a drink of their own (that they could share with some of their friends that came over in the morning).  They each picked out a few pieces of fruit (oranges, lemons and limes) and we added Hawaiian Fruit Punch, Ginger Ale, Pineapple Juice and Orange Sherbet into a huge container.  Not that good, but they liked it and were proud (and that is all that counts).

As to dinner, Jen outdid herself as always, putting together a spread over the course of two days.  It was a great great meal.  I ate slowly because I didn’t want it to end (plus I had a stomach ache).  As has become a tradition for us (and many others I am sure), we all went around the table and said what we were thankful for.   Since the kids do not know the extent of my condition — only that I had an infection that has been getting cleared up (which explained why I couldn’t go to work/travel), everyone’s “speech” was sanitized.   But when we went around the room and it got close to me, I had to get up for a minute and walk away to make sure I was going to be able to say something without completely losing it as I was already tearing up.   Sitting around my entire family and thinking about the last eight months was a little overwhelming.   I am a big believer in “it could always be worse,” and I say that a lot these days when thinking about all of the terrible tragedies and illness that we hear about on a near daily basis.   But how about being overwhelmed by wondering if it get any better than this moment, on my favorite holiday surrounded by so many people that are so important to me, knowing that in a few weeks we were going to be able to start getting back to normal?

So I raised a glass and asked everyone to make a toast.   I said I was thankful for my boys and all of the family being together.  But I said I was most thankful for Jen because without her I would still be wandering around half naked (would have liked to have said in a hospital gown, but everyone knew) somewhere in White Plains (i.e., near the hospital).  I than said cheers and l’chaim to many, many, many more Thanksgivings.  I haven’t been drinking too much, but that sip of wine was delicious [it probably helps that I opened a fantastic bottle from Basta instead of the cheap stuff I normally drink.]

After everyone said their goodbyes, Jen and all four grandparents did some clean-up, Brandon went to sleep, and Jake and Ryan joined me in our bed for an early sleepover to watch the Steelers beat up the Colts.   We all feel asleep together just past 9.   Tough to beat moments like that.

Jen — it certainly hasn’t been an easy ride these past eight months but I really would be lost without you.   I still don’t know what medication to take or when to take it.   You are my advocate, my best friend and a huge pain in my ass.  And I love you more everyday.  I am so appreciative of the time we got together this year; it may have been for the wrong reasons, but being with you everyday was a blessing.  Being thankful for you and everything you do is an understatement among understatements.

After Wednesday’s treatment, we have no treatment until December 7.   And then the last intense push begins.   We go in for treatments just about everyday for 2 weeks until the intense chemo is done for good on December 21 (assuming no hiccups).   It is undoubtedly going to take some time to recover after a long eight months, but the house arrest is going to be over and the recovery — and return to normalcy — is going to begin immediately.   I am thankful, but more excited than anything.

I have close friends out there who I know had tough Thanksgivings for a variety of reasons.  I am so sorry for all of those grieving, dealing with personal issues or sick loved ones that impacted the holiday.  It is impossible to always be positive.  In tough moments, for me at least, sometimes it helps to stop thinking and just play.

I hope everyone can enjoy some of the Thanksgiving weekend.

Big Night

Tuesday October 25, 2016.  At 7:00 p.m. tonight, the Cleveland Cavaliers will raise the championship banner they won in June (Phil Jackson and the rest of the NY Knicks will be on hand to watch).   One hour later, the Cleveland Indians will host the Chicago Cubs in Game 1 of the 2016 World Series.  Too good to be to true right?

Ironically, the only Cleveland team I have seen live in the last six months — for reasons outside of my control — was the Cleveland Browns on opening day in Philly.  At 0-7 and playing their sixth different quarterback, the only question for the rest of this season is whether the Browns will figure out a way to play themselves out of the first pick in the 2017 draft.  I got to believe that will happen.  And of course, the quarterback that gets picked #1 in April will go on to play in All-Star games and win Super Bowls.  But we have the Cavs and the Indians, and as they said in Believeland, Cleveland fans are forever hopeful and loyal (i.e., the Browns will start next season undefeated).

There are a lot of story lines in this year’s World Series.   The last time the Indians won the World Series Harry Truman was the President (1948).  The Cubs have not won since Teddy Roosevelt was President (1908).  One of these teams has to win.  Indians and Cubs fans  have so many years of agony that either winner will enjoy this more than most.  At the same time, Indians and Cubs fans have so many memories through these years of losing (that are frankly more important than wins) that years of winning would have made unlikely.

I still remember going with my Dad to see Major League in a Cleveland movie theater in 1989 (I was 11).   If you haven’t seen that movie, you should.  Granted it was a movie theater packed with Cleveland fans starved of winning for decades, but it was the first and only movie I have been to where there was a standing ovation for a movie screen.  And the Indians only won their division — not the World Series!

I also remember taking the Cleveland rapid transit downtown with my buddies to see the Indians.   The Indians were so bad when I was growing up that you could get tickets for around ten bucks, which entitled you to an entire row in the bleachers.

As to the present day, of the many stories I have read over the last couple of days, one of the best stories is about the Indians GM Mike Chernoff (link included here) .  The other is about Jon Lester (tonight’s starting pitcher for the Cubs) and Anthony Rizzo (the Cubs starting first baseman) .  These stories need no explanation.  I am sure all you Clevelanders out there will forgive me when I root for Lester and Rizzo.  As well as the Indians, of course.

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While the regularity of my posts has gone down over the last couple of months, this has absolutely no correlation to my prognosis or how things are going.  I am still counting down the days to being done with the intense chemo treatments and returning to normal life.  We are very much on track.  And notwithstanding how crappy some days have been, I love my time with Jen and the kids.  I don’t usually have a chance to watch basketball practice at 4 pm on a Monday or Tuesday or go walking with Jen at 10 am on a Wednesday followed by lunch.  My appreciation for these “moments” is even greater as the light at the end of tunnel comes more into focus.   These moments, together with the unwavering support from family, friends and colleagues, lights a fire inside of you to come back from all of this and do everything a little better.  Jen helps to remind me of this (and everything else that is important) when I get down for stupid reasons (like being out of breath after walking up a hill or feeling like a slob).

On Thursday morning, we head back into the hospital for the last Methotrexate infusion.  In July and August this necessitated three nights at the hospital, but Jen’s medical counseling got us out after only two nights earlier this month.  [After the injection, you cannot leave the hospital until the levels of Methotrexate in your bodily are significantly reduced.  Drinking lots of water helps flush the Methotrexate out of your system.   If Jen comes into the room and I don’t have a 1.5 Liter bottle of water in hand, there are problems.]  There will be another chemo injection on Friday.  After a few days of recovery, we will start the second (and last) “Re-Induction,” which will carry us through mid December.  Although certain treatments can slip a two or day because of blood counts, we have less than 60 days to go.

State of Play

Saturday, October 1, 2016.  My last post (on August 11) was near the end of the first “Intensification” phase of my treatment and just before the start of the first “Re-Induction” phase.  I had just learned that the intense treatments were going to last through 2016; I was incredibly bummed as I had it etched in my brain that I was going to be back in the fall.  But we’re well past that now….

I distinctly remember Jen telling me in mid-August that once we got to September, time was going to fly.  She was spot on.

The first Re-Induction phase ends Monday (on Rosh Hashanah as luck would have it), with one more chemo infusion.  [I am not particularly fond of any chemo, but the chemo on Monday is one of my least favorite since it, among other things, makes my fingers and toes tingle for days].  I am thinking this is not the year to be skipping temple, so I am planning to go tomorrow night and early Monday with Jen and the kids (and we scheduled the chemo treatment accordingly).  I might even go Tuesday as well.

Notwithstanding 3 spinal taps, a steady regime of steroids and chemo pills, and 20 separate chemo infusions over the last 43 days, the first Re-Induction phase has not been so bad.  We avoided overnight hospital stays (really hoping not to jinx that now), only required two blood transfusions (both this past week) and neutralized many prior side effects from the chemo with various medications, including two shots of Lovenox each day — which continues to be my two least favorite moments of the day.

And while my energy level has been low and the constant poking from IV’s drives me crazy (especially the last two weeks when we had eight infusions in the span of 10 days), we have still been able to been able to enjoy many moments over the past seven plus weeks.  From weekends at the shore in late August; walks in the morning after the kids go to school; attending my cousin’s wedding in Boston with many family members; watching the boys play soccer on the weekends; visits with friends; having both our parents in town to help out; live fantasy football drafts for both Jake and Ryan (and constant adjusting to our line-ups ever since); to catching-up on television shows that I never made time to watch (and frankly I look forward to not having time to watch again).

No doubt one of the highlights of this phase was taking the big boys (Brandon is still too young) to the Browns/Eagles game week 1 in Philadelphia.  When I missed Jake’s birthday in May because I was in the hospital, I bought tickets to the game thinking I would be done with treatment.  While I was obviously wrong, there was no way I was missing that game.  And although I did not feel great, we made it happen.  It was a special day.  My dad flew into Philly for the day, and my father-in-law and brother-in-law (who also drove in from NY) came to the game too.  We were fortunate to get field passes on the Browns sideline.  And, as luck would have it, RGIII threw a football to Jake (Jake threw a tight spiral right back to him), Ryan got to throw a ball to Terrelle Pryor, and a Browns coach flipped us a game ball (which Jake held for a good 9 hours (as seen below) and is now in a case).  After that pre-game experience, it did not really matter that the Browns looked like the Browns.  Aside from getting our car towed at my father-in-law’s surgery center, it was a perfect day.

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In addition to driving me to the city for treatment or check-ups on a near daily basis and putting up with my mood swings and general shenanigans, Jen also does everything else around here (car pools, homework, waking up at all hours with one of the kids, breakfast, lunch and on and on and on).  Not to say she does not usually do all of that.  She does, but now also has to take care of me full-time.  I am thinking she might need (and no doubt deserves) a vacation.  The good news is Jen’s vacation is right around the corner.  By my count we have 79 days to go.  And we know exactly what is coming.  Starting as soon as possible after Monday, we follow the same course of treatment that started on July 26 and ends on Monday.  While some people take breaks in between the phases, we have yet to miss a day and don’t intend to.

Wishing everyone a happy and healthy new year.  It is going to be a great year.

Embracing the Grind

Thursday, August 11, 2016.  It has been a little since my last post.  14 days to be exact.  I know this because everything these days are by number.  Each phase of treatment; your blood counts; methotrexate levels; how many bottles of water you have consumed; your blood pressure, temperature etc.  Lots of numbers.  Some of which are larger/longer than originally expected….

Our sole focus is being done with this forever.  Whether that takes — whether it be five, six or eight months — that has obviously always been the goal.  We are incredibly fortunate to be in a position for this to be both a possible and realistic goal.  And there is no doubt in my mind that we get there.  So in between, while you sit on the sidelines of life as it relates to 70 plus percent of your normal existence, you have to embrace the grind of treatments (i.e., the new normal), put your head down and get through it.

But nothing in life is that simple.  Plus I am human, so much of time is consumed with thinking about why this can’t be shorter, how I can get back to work, when will I feel and look like myself again and being able to make concrete plans and actually stick to them.  That said, I really don’t have “bad days.”  Treatment days and hospital stays are not particularly fun.  But they really are not that bad, especially because of the unbelievable support system around us, who all help us forget (even if only for a minute) the crap we are going through.

And in between, there are lots of goods days (with silver linings everywhere).  In fact, after leaving the hospital on July 29 and not having any treatment before returning to the hospital this past Tuesday (August 9 (i.e., “day 15”)), I had a really good week (including a great weekend at the shore for the first time in a while).  Getting the opportunity to walk around the neighborhood with Jen everyday at 10 am and seeing the kids both before and after camp on an almost daily basis was not something I thought I would get to do this summer (or any other summer for that matter).  Visiting with friends throughout the week and weekend is always a highlight.  We even got out to dinner twice this past weekend for the first time in months, which felt great.  And without the minute by minute pressures of work (which I love and miss), I have been much more present when I am around and I am certain that has been noticed.  [Something to remember/store away.]

Although there are no “bad” days, there are most definitely frustrating ones.   Having to call Jake at camp yesterday to let him know that I could not make it up to Maine for father/son weekend starting this Friday has given me a stomach ache for weeks.  Jen did not sleep for many nights leading up to yesterday’s call.  And after rehearsing what we were going to say with each other, the camp owner, our parents (and anyone else who would listen), when it came time for me to say my part, I lost it and Jen had to jump in.  It was the first time I cried since late April/early May when all of this went down.  No parent wants to disappoint their kids.  Ever.  And I of course made a huge deal about father/son weekend all year because I remember when my Dad came up to camp my first summer and slept in my bunk for two nights.  We beat Dick and Greg Adler in doubles and I watched my Dad water ski.  That was 28 summers ago.  In the end, Jake was unfazed and actually thrilled to hear that his mother (who gets A+’s across the board always) had ordered a huge water slide for the backyard and was going to have a post-camp get together.  [And I am going to sign up for father/son weekend in 2017, and likely torture all three of my boys when I insist on going up every summer even if people usually only go once.]  Plus, Jake and I are going to have breakfast everyday next week, take long walks and I signed us up for a golf lesson.

It was also frustrating to miss my 20th Spanish River High School reunion this past weekend in Florida.  Having been in touch with a bunch of people from high school over the last couple of months because of the circumstances, it would have been nice to get together and properly catch up.  From the pictures, it looks like everyone had a blast.  It makes you realize that losing touch with people is an unfortunate part of life, but it makes getting back in touch that much sweeter (no matter the reason).   Hopefully we have a 25th year reunion (I will likely still be bald).  And I did get a good consolation prize in getting to hang out with Royce Bergman on Monday afternoon; we had lost touch during the college years and had not seen each other in close to 20 years, but we have been able to pick right back up (and catch up — cliff notes version — on everything in between).

Last Thursday — when we realized that the protocol that I am on will carry us through 2016 — was particularly frustrating.  When I got to the hospital on April 27 (107 days ago), I remember hearing a couple of things: you are going to be fine, you will be in the hospital about four weeks, and the treatment will last about six months.  Since I knew I was going to be fine, and after only needing to be in the hospital about two weeks for the “induction phase,” I figured we would be done with treatments in four-five months as there had to be a way for me to beat the six month prediction.  That meant getting back to work (and working out (I know, I’m nuts)) in September/October.  But it does not work that way.  There is no beating a set protocol.  It was frustrating to figure out that we were not even halfway through the treatments in the designed protocol.  Like all things in life, you vent a little to your family and close friends, put things in perspective (something I do a lot of these days), and realize a few extra months is just that.  As desperate as I am to dive back into work and everything else as quickly as I can, I am on a tested protocol that is designed to rid your body of the initially presented cancer (which it has) and provide a tried and true course of treatment thereafter to help ensure that those same cancer cells do not present themselves again.  And when the chemo is complete in late 2016, there will be three years of maintenance to help make this a reality.  We are obviously all in.

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Today is our third day in the hospital this week (we told Ryan I had another bankruptcy conference in Delaware!).  The hope is to go home no later than tomorrow morning; Jake’s bus from camp arrives at 1 pm in Westchester.  Other than being tired (sleep is hard to come by in the hospital), I feel OK.

I had another Methotrexate injection on Tuesday, followed by an injection of PEG-Asparaginase on Wednesday.  The “PEG” led to blood clots and high cholesterol in June, but we are prepared this time with twice daily Lovenox and cholesterol meds (which I have been on consistently over the last month).  I am also back on a low dose of steroids for the week and Leucovorin to reduce the effects of the Methotrexate.  Methotrexate is a medication that interferes with the growth of certain cells that reproduce quickly in body, including cancer cells.  [As I learned from Lenny this weekend, Sidney Farber pioneered clinical development of Methotrexate in the treatment of cancer.]   A significant IV injection of Methotrexate — like the injections I had on July 26 and August 9 — is highly toxic and, accordingly, the levels of Methotrexate must be reduced before discharge.  Hence a three-four day hospital stay is necessary, with 24-hour IV’s of sodium bicarbonate and Leucovorin to ensure that all organs (especially your kidneys) are protected as the Methotrexate enters and exits your system.   This is all part of the “Intensification” phase of the protocol, which will be done on Tuesday (8/16), and followed by the “Re-Induction 1” phase (which lasts about 45 days).  And then we will do both phases again.  I am going to need to make another trip to the mall to get some fall/winter appropriate hang out clothes.

 

Visiting Day

Thursday, July 28, 2016.  As I sit here at my home away from home (the 14th floor at NY Presbyterian Hospital), I continue to think about this past weekend.  Although Jen had her doubts about whether I would actually get there, I don’t there was a question in my mind
— at any point — that I would spend this past Saturday (7/23) at Takajo for Jake’s first visiting day.  Sometimes things just work out the way they should (notwithstanding lots and lots of headaches and heartburn leading up to that moment).  Saturday was one of those days.  It was all about Jake (including the awful rash he developed on his rear end (and leg, thigh and chin) that he would wait weeks to show the only person he was comfortable showing it to: his mom of course!  It was also a “normal” day.  And normal can sometimes be a beautiful thing, especially when you haven’t felt normal or like yourself in a long time.

Other than Jen making sure I was feeling OK a few times in a very subtle way, the day was not about how I was feeling or what the last couple of months have involved.  There were even moments where I think everyone was able to “forget” for a few minutes and enjoy the moment.  The poetic part about all of this was realizing that my son was experiencing the same thing that was such important part of my life starting at 10 and extending through most of college; being able to put everything else on hold for 7-8 weeks, developing lifelong friendships, living in the moment and just being yourself without the pressures of everything else that you deal with on a daily basis during the rest of the year [and of course, I understand the pressures in my life as a kid were nothing compared to the pressures that most people deal with, and just being able to go to camp is a blessing in and of itself, but we all have pressures…].  Watching Jake run around the soccer field, interact with kids and counselors inside and outside his bunk and show me around the camp, including the various basketball courts where he likes to spend most of his time, was the happiest I have been in a while.  There was something about being there and being with Jake (and the rest of the family) that really allowed me to be my old self and walk around camp the entire day.  It actually felt good watching people whizz by in golf carts; I made a pact with myself that I was not getting in a golf cart at any point during the day (Jen was going to tell Jake that we won a raffle that would give us access to a golf cart all day).  Most importantly, it felt good watching Jake, who seemed to be in his element and really making the most of everything camp has to offer.

I think this picture says it all.  There is no doubt it is a picture that will have lots of value for me and Jen for MANY different reasons.  I look at this picture and I am so thankful and grateful.  Definitely worth a frame.

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Huge thanks to Jake’s grandparents (and Jen for orchestrating everything as usual).  Both sets of grandparents have been there every step of the way, including in Maine this weekend.  These are people who always (and continually) go above and beyond.  The Sussberg’s flew in from Florida.  The Nelson’s drove 14 plus hours from Philly to spend a total of 18 hours in Maine.  And everyone helped to make an important day a complete success.  From sleepovers at the hotel, helping with Brandon (who was ready to leave about 30 minutes after visiting day started (Helene and Brandon spent some quality time at the water front and Janet and Allan picked Brandon up from camp mid-day)), being with Jake — who I know appreciated having both sets of grandparents over the course of two days — to chauffeuring us from Portland to camp and camp back to NY.   Allan even kept his heavy right foot off the brake most of the ride back.  Thank you all for being there.  I have a lot of pride (admittedly sometimes too much), but I do not have too much pride to say after the fact that there is no way we could have done this weekend or visiting day itself without all you guys being there.  [No doubt we left it all on the fields at Takajo:  I slept an hour or two in the car on the way home Saturday night and from 10:30 pm to 10:00 am (without moving) Saturday night into Sunday am.  Thanks (as always) Jen for taking care of me, the boys and everything else.].

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We started the next phase of treatment on Tuesday (I think we are in Phase 3).  This next phase necessitates a hospital stay for a Methotrexate injection, followed by Leucovorin Calcium injections to help ensure proper function of your kidneys (and other key organs).  I am told it typically takes 3-4 days until you are back to normal operating levels following the Methotrexate injection (we told Ryan I was at a bankruptcy conference in Delaware this week).  This all gets repeated in 14 days.   The Methotrexate injection started late Tuesday night and went into early Wednesday am (about three hours).  I am really hoping to go home tomorrow.  Feeling fine (not great, but fine).  Not experiencing any real side effects at this point (still no hair loss; I am actually growing hair at a faster clip than usual — and of course it is everywhere I don’t want it).  But I can admit I am moody, irritable, tired (it is hard to sleep in a hospital) and undoubtedly ready to release the pause button and let life start playing again.  All in due time….

Platform

Monday, July 18, 2016.  Got a chance to watch the ESPY’s on Saturday morning with Jen (the kids went away for an action-packed weekend at the shore with their grandparents, which was hugely appreciated (the trip also came with transportation to and from!) considering we did not know what our “transfusion” schedule was going to be on Friday and Sunday).

I had not truly appreciated that the ESPY’s was so much more than a review of the greatest moments in the past year of sports.  It is that, but it also so much more.  Yes I had seen the commercials in the past, heard bits and pieces of the Jim Valvano speech and listened to the acceptance speeches from both Michael Sam and Kaitlyn Jenner when they were honored (respectively) with the Arthur Ashe Courage Award.  But I never fully comprehended that the sports is truly secondary when it comes to the ESPY awards.  Instead, the ESPY’s uses sports as a platform to make a difference, whether it be social injustice, gun control, cancer and so much more.  I am sure someone has studied the “evolution” of the ESPY’s, demonstrating that it was sports-focused when at the inception.  But I do know that Jim Valvano’s famous speech (after he received the Arthur Ashe Courage Award) was in the ESPY’s inaugural year (1993).  In any event, kudos to ESPN and ABC for a great and meaningful awards show.  Only one question:  what exactly does the invite say as to the dress code?  [If anyone has watched, you will no doubt understand.]

This year’s awards hit particularly close to home because both Eric Berry (Hodgkins’ Lymphoma) and Craig Sager (Acute Myeloid Leukemia) were honored.  There was also a powerful call to action from Carmelo Anthony, Chris Paul, Dwayne Wade and LeBron James.  And Zenobia Dobson’s speech, on behalf of her son Zaevion Dobson who gave his life (at 15) while literally covering two teenage girls from gang-related gun shots directed at them for no reason at all, was both incredible and hard to digest at the same time.  No offense to any other award recipients, Peyton, Abby or Kobe (honored as “legends”) or the tribute to Muhammed Ali, but these were the four clips that I would watch if I did not have the time to watch the entire show.  The clips and speeches speak for themselves.  Remember, this is coming from a Cavs fan (but watching LeBron pick up several trophies was truly secondary to what the ESPY’s are all about).

Athletes, ESPN and all of the major sports leagues have a phenomenal platform to reach a wide audience for the many causes that they in fact stand up for time and time again.  They all should be commended (and applauded).  As should Zenobia Dobson and the millions of other non-famous people in this world who donate their resources — whether it be time or money — to causes that are important to them.  While athletes have an opportunity to get their message out to a huge audience, we all have the ability (and a platform) to effect change.

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I am sitting in Infusion Room 25 today.  Have not been in this spot before.  Although it is not different (in any material respect) than any of the other infusion rooms.  After not needing blood or platelets on Friday and having the Sunday transfusion appointment cancelled, I was thinking that today was simply going to be a check-up with the doctor.  Turns out my counts were pretty low and I needed two units (i.e., bags) of blood and one unit of platelets.  Notwithstanding the low hemoglobin, it was a good and active weekend.  Got to relax with Jen, catch up with friends, even made it out to a birthday party Friday night, walked outside and on the treadmill, and hung out with the boys at a friend’s pool followed by dinner on the deck and a special trip for yogurt.  Reading to Ryan and Brandon last night was the highlight of the day.  My counts should recover just time for visiting day on Saturday, which I am really looking forward to.  Just being able to watch Jake and have him show us around his camp is going to be awesome.  Then it is back home for the next round of treatment in the hospital.  Although the Doctor suggested giving us a few days “to enjoy” once my counts have recovered, both Jen and I did not hesitate in saying we both wanted to get started on this next round as soon as we can.  After all, the sooner you start, the sooner you finish.