Author: The Sussinator

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.

——————————————–

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.

Wednesday, July 13, 2016.  It has been 15 days since my last post.  At the time, we were gearing up for another chemo grind that started Wednesday June 29th and effectively ends today.  There were 8 treatments in 11 days (Wednesday through Saturday of both weeks); the cherry on top is a spinal tap and shot of Vincristine today.  We also just learned that based on my blood work this morning, today I am going to need tw0 rounds of platelets (before the spinal tap to avoid blood clotting), as well as two more units of blood (i.e., bags of an unknown person’s blood) to address my low hemoglobin numbers (all of which was to be expected and will actually necessitate further platelet and blood transfusions on Friday and Sunday).  [By the way, special thanks to all of those out there that donate blood — never realized or appreciated how important that actually is].  After three blood transfusions over the last 14 days (and five before that), I am becoming adept at identifying when I need to stop at the gas station for a refill; I bruise easily when my platelets are low (especially from Lovenox) and I start getting dizzy after even brief activity when my hemoglobin is low (going up the stairs, taking a shower).

[Disclaimer:  I am not regurgitating all of these details to complain.  Although I do complain (especially to my wife and family), I am not a complainer.  But I want to explain why I went on the DL for 15 days.   And, more importantly — at the appropriate time — I want my kids to be able to truly understand the specifics and details of what went on this spring and summer so they comprehend why I couldn’t coach baseball, missed various games and was generally inactive.  Finally, if anyone out there is going through a similar course of treatment, hopefully it is helpful to understand how my body (and mind) reacts at various points along the way (keeping in mind that, of course, everyone is different).   I have felt the utmost highs — especially at the beginning when I got out of the hospital in record time, was able to connect and reconnect with so many different people throughout my life and, other then mouth sores, had very little physical impact from chemo.  To the lowest of lows (at least so far) — at some point right before this last round and especially during the first week of this nine course meal when I did not leave my bed and have felt (and noticed) the affects of not working out for three months.]

Major League Baseball has both a 15-day disabled list and a 60-day disabled list.  Players can be moved from the 15 to the 60-day disabled list, but you cannot move a player from the 60 to 15-day disabled list.  I am thankful that there will be no transferring to the 60-day DL as I actually feel good today — even before we found out that I needed platelet and blood transfusions today and the rest of this week.

But the last couple of weeks were rough.  Before yesterday, when Jen and I walked 2.5 miles outside, I had not been active since early June.  [This was when I had back-to-back hospital stays for dangerously low hemoglobin and a neutropenic fever that was caused by parainfluenza.  Just when I started feeling better we had the blood clot issue down at the Shore.  I am still shooting Lovenox into my nonexistent twice a day to help clear up the clots.  Yesterday, however, we turned the corner and it felt good to be active.  Following a few days lying flat after the spinal tap today, I am planning to remain active and get back to my basement gym.]

The most recent bout of inactivity was caused by a total lack of energy and extreme nausea.  I remember Jen telling me she was nauseous when she was pregnant with Jake and I usually just brushed it aside.  She would eat something and it would subside for the time being.  Her vice back then was Cheese-Itz.  Let me tell you, I have a newfound respect for Jen and each and every pregnant woman in the world.  The nausea I had the week of June 27th was awful.   I could not eat and barely drank for several days.  It was a constant sensation of needing to throw-up, yet there was nothing to throw-up (other than a few times, including on the sidewalk and in the bushes at the hospital).  And when you are feeling blah and lacking energy from the prior rounds of chemo, not eating and feeling nauseous only amplified the blahness and lack of energy.  Even talking would lead me to drive heave (sorry about that Jen!).   My father was in town driving me back and forth to treatment that week (which we greatly appreciate); I rarely spoke to him in the car and on multiple trips I slept in the backseat [partly because I felt like crap, but also partly because he rides the break with a heavy foot].  He did, however, get a gold star for cleaning up a solid amount of throw-up near our front steps when we got back from treatment on June 29th.  Now my Dad and father-in-law have both cleaned up my throw-up within weeks of each other (and I was totally sober both times).  I wonder if anyone else can make that claim?

My bother-in-law and sister-in-law drove the boys down the Shore for the July 4th weekend and Jen and I really appreciated the entire Nelson clan hanging with the boys (who had the best weekend) so we could have a few days to relax together after my treatment on Saturday July 2nd.  After experimenting with a new anti-nausea medication that Friday, my appetite came back late Saturday and I was able to start eating again.  I had gotten down to 174 pounds so having an appetite back was welcome.  But while my appetite came back over the weekend and has been steady this past week and a half (back up to 180 this am), my energy level was still pretty low.  And while I was in bed or planted on the couch for much of my Mom’s stay last week with bouts of nausea and low energy [very much appreciate her being here and shuttling me back and forth for treatment (we know how much she loves to drive in NYC) and doing everything else in between], by the end of the week it was to the point where I had some energy to focus on things that I had ignored for weeks (paying bills, reading a book, actually being able to focus on a movie or show).

The constant through all of this has been the continued support from friends and family, which keeps a smile on my face.  I am forever grateful and indebted for everything.  Even when I am not feeling well enough to see everyone, I am humbled by the support and concern.  It means the world to us.  This “process” (and cancer generally) is frustrating and at times depressing.  All I want to do is go back to my daily grind and typical weekend routine.  The lack of energy brings out qualities, like laziness and irritability, which are not qualities that have or ever will define me.  I want to take those moments and feelings and lock them away without a key.  Yet at the same time, and sometimes moments after feeling lazy, you are constantly reminded of the little things that matter so much more (like reading a book to Ryan and Brandon last night, which I wasn’t able to do for a bit, or writing a letter to Jake at camp).   So every time I get down or frustrated, I put my imaginary “perspective goggles” on [makes me think of Brandon’s Teenage Mutant Ninja Turtle swim goggles that he would wear all day if we let him] and realize that I am one lucky guy because of the support system of family and friends that I have by my side.  I cannot thank all of you enough.

I saw very little of the Major League Baseball All Star Game last night.  In fact, I turned it off to eat dinner after Kris Bryant homered in the first inning.  When I turned it back on, it was the 5th inning and Major League Baseball was running a segment on Stand Up To Cancer.  The next thing you see is every player and fan at PetCo Park holding up a sign that says “I STAND UP FOR. . .” with a blank to fill in the name of someone affected by or otherwise battling cancer.  It was pretty moving to watch the cameras roll through the stadium with more than 40,000 people holding up these signs.  Our news headlines these days are dominated by repeated terrorist attacks, more troops being shipped to the Middle East in response to those attacks, and alleged racial profiling in connection with the deaths of Philando Castile and Alton Sterling, which was immediately followed by the shooting deaths of five white police officers in Dallas — allegedly motivated in direct response to the recent deaths of Messrs. Castile and Sterling.   Cancer, however, is not racist or otherwise religiously motivated.  Just come to the waiting room on the third floor at NY Presbyterian Hospital or better yet watch the replay of the camera scrolling through PetCo Park last night; people of every color, size, shape and religion know someone that has dealt with or is otherwise dealing with cancer.  Wouldn’t we all be better off focusing our time, energy and recourses on curing rare diseases that affect people across the globe?  Obviously I am not the first person to ask this rhetorical question, but watching the Stand up to Cancer segment last night sure made me wonder more than I had ever before.  I guess I had good reason to pause and take a deep breath….

Tuesday, June 28, 2016.  I started watching Big Brother with Jen last night.  Kind of ridiculous, but dare I say mildly entertaining.  Anyway, the “motto” of the show is “expect the unexpected.”  That is something I am beginning to embrace.

I last posted on Saturday morning.  It was the day after Jake had left for camp, we had gone down to the shore to relax, and I was just starting to feel better after a solid week of parainfluenza (a fancy way of saying the common cold).  When I had gone to the bathroom at 3 or 4 am on Saturday am — which has become a somewhat regular occurrence — my right calf was tight.  It felt as if I had been doing heavy calf raises the day before.  But I haven’t done calf raises since the late 90’s.  My calf remained tight throughout the morning and early afternoon.  Jen and Lenny both suggested drinking more water.  If you have seen My Big Fat Greek Wedding (I have yet to watch the sequel and don’t plan on it), just think of Windex when I say water; Lenny (and Jen because she is his star pupil) believe that water cures everything.  And I mean everything.

Although I did drink some water throughout the day, by about 2 pm, with my calf still tight, I thought it made it sense to call the doctor and explain.  Sure enough, after explaining the situation to the doctor on call, he said there was some concern about blood clotting and he thought it best for me to come into the emergency room and get an ultra sound.  Only problem was we were at the shore, which is approximately 2.5 hours away from my home away from home (NY Presbyterian).  So we had to call an audible.  Shore Memorial Hospital here we come.

Lenny and I loaded into the car for a quick trip to the local ER.  But this was no quick trip.  To make a long (8 hour) story short, the person that needed to give the ultra sound had to be called in from who knows where.  Once she arrived and the ultrasound was done, I needed blood work at the request of my doctor (who thank g-d got involved and on the phone directly with the attending doctor in the ER at 7 pm on Saturday night!).  But because of some of the medication/chemo, the blood tests were inconclusive and showing cholesterol levels that were off the charts (Lenny had some original theories, but they were quickly debunked and it was explained there is a specific chemo medication that causes this).  It turns out that I had several “superficial” blood clots in my calf.  These clots were close to the popliteal vein in my leg, which is concerning because if the superficial clots move into the popliteal vein, the clots can travel up the leg and potentially to your lung.  This necessitated an immediate injection of Lovenox (which I now self administer into my “abs” for the next 30 days).  All was not lost, however, as we came home from the ER (around 10 pm) to a full BBQ dinner care of Justin.  Other than watching Lenny mix up so many different foods on one plate I thought I needed anti-nausea medication, the food was delicious.  All problems were solved.

The last 48 hours have included several long naps, a trip to the doctor with Jen for a post-shore check-up and lots of resting.  We did get to see Finding Dory with the boys on Sunday afternoon, which I promised I was going to take them to. I had said it was going to be a boys only trip, but Jen had to drive and I barely made it myself.

Gearing up for another chemo grind that starts tomorrow and carries us through July 9th (another 8 games (treatments) in 11 days).  My chin is up and I am looking downfield.  Not sure what quarter of the game we are actually in, but I know we are winning.  [I know, way too many sports metaphors in one paragraph….]

 

Saturday, June 25, 2016.  Six days since my last post.  I have parainfluenza to thank for that.  I should have known that something was off when suddenly I was able to sleep for 2-3 hour clips at any point in the day.  All of which started last Saturday afternoon.  Other than an Entourage-esque cameo at Father’s Day brunch last Sunday (which was successful, as I was able to destroy an everything flagel with the works in record time), I spent most of Father’s Day in bed.  I was telling myself I was resting up for Game Seven, but the reality is this virus — which I probably caught from one of the kids — was working its way through my system.

After barely being able to hang with the Nelson/Halpern side of the family, I was equally relegated to bed when Drew, Alexis and the girls came to say hello on Sunday afternoon.  Jake did, however, join me in bed to watch Ghostbusters, which was even more entertaining than I remember when I saw it with my Dad in the 80’s.  And I got some great Father’s Day gifts from Jen and the boys:  a new wallet, Knicks pajama pants, a soft Syracuse t-shirt and a pair of under armor sweat shorts.  These were true gifts from my perspective  — things that you need but that you would never buy for yourself.  [I liked my existing wallet, but there was no doubt it was time for a new one.  Yet I would never have bought myself a wallet, even on a solo venture back to the mall.  Same goes for the pajamas, the t-shirt and shorts.]

But the highlight of Sunday was, of course, watching the Cleveland Cavaliers break the 52-year championship drought.  While Brandon went to bed early, Jen, Jake and Ryan stayed up until the very end.  We watched the first half in my office and the second half upstairs in our room (after a brief call with Popa at halftime to effectively concede the game because we were down 49-42).  Although I faded out for portions of the third quarter and the beginning of the fourth, I was up and sitting on the edge of the bed for at least the last seven minutes of the game.  Watching LeBron hit that second free throw was the equivalent of eating half a box of Pepto Bismol and achieving immediate relief.

Everything to be said has been said.  When you have LeBron you are never out of a series (I said that on June 16th by the way).  That is fact.  I will never forget after Speights missed that last desperation three from the corner (which would not have mattered anyway), jumping up and down with Jen, Jake and Ryan in the front of our bedroom cheering for the Cavs.  And seeing LeBron hug Love and go down to his knees with real tears streaming from his face.  The power of sports is special.  And it’s real.  For everyone who says it is just a game, go back and watch the end of Game Seven and the 15 or so minutes of activity after and tell me it is just a game.  I don’t think the boys will ever forget jumping up and down and dancing with Jen and me after that win.  I also know many many people from Cleveland, both in and outside of the area, will remember that moment as well.  Hats off to Joe Posnanski who captured it best.

Monday got off to a slow start.  The parainfluenza (without me knowing) was really kicking in.  There was a quick trip to the bathroom to throw up and then an unsettling ride into the city with Evan for blood work.  At first I thought it might have been Evan’s driving (sorry pal but you drive with a heavy foot), but when we had to pull over right after paying the toll and before merging onto the FDR so I that I could leave my scrambled eggs on the side of the road.  At that point I knew something else brewing.  It turned out breakfast on Monday would be the last time I would eat until Tuesday night.  I had blood work and a quick visit with the Dr. on Monday morning, where everything seemed fine.  While there was a possibility that I would need a blood or platelet transfusion this past week, it turned out those numbers were good.  The only count that was low was my neutrophil level.  Approximately 50-70% of white blood cells are neutrophils.  These are mature white blood cells that help protect against disease and fight infection.  The normal range for a neutrophil count is 1,500-8,000.  When neutrophils are less than 1,500, this is called neutropenia.  It is not uncommon to be “neutropenic” when you have leukemia or are otherwise going through chemotherapy (and there are certain dietary retractions you must follow to avoid bacteria — think pregnancy diet).  During my original hospital stay, I was neutropenic and required a shot to help boost my numbers.  On Monday, my neutrophil level was 200.

After Evan dropped me off at home around 1130 am, I ended up getting in bed and did not leave again until Evan picked me up yet again on Tuesday (late in the afternoon) to take me to the ER.  In between, I missed Ryan’s birthday party on Tuesday afternoon and ran a fever close to 101 (any fever over 100.4 F necessitates a trip to the emergency room especially when your white blood cells counts are low because an infection can be extremely problematic).  This led to an overnight stay at my home away from home — NY Presbyterian Hospital.  And what do you know, my room of choice (14-228) was waiting for me!  After several hours in the ER getting pumped with antibiotics and fluids — where Drew and Evan kept things light through regular interaction with many special “general population” guests in the ER  — we finally made our way to my room around 8 pm.  I was out of it because of a shot of Benadryl after a mild allergic reaction to one of the antibiotics.  I actually was surprised and thought it was a coincidence when we ran into Justin in the elevator (but he had been there and I had just been out cold).  I briefly recall listening to Brad and Justin talk about houses in Short Hills and I am pretty sure I had a dream (in between getting my blood pressure tested every two hours) about the house they were discussing.  [Obviously I need to give Jen a huge (and permanent) shout out.  In between throwing Ryan a birthday party, with both Jake and Brandon in attendance, she was working her phone to make sure I had a ride to the ER and would be taken care of appropriately upon arrival.  I am her fourth child and incapable of doing any of this myself.  In between, she reminds me to stay hydrated (which  I do not do well), and takes care of everything else for me and the boys.  All I do is get treated.  Jen literally does everything else.  I don’t say thank you enough or show nearly the appreciation that she deserves.  Instead, I unnecessarily take out my frustrations (which there are many as of late) on her.]  Antibiotics and a white blood cell booster shot were administered over night.

After a few tests early Wednesday morning, including a flu culture (where they shove a long q-tip up your nose (sucks)), Jen came to the hospital and we met with the doctors late that morning.  That is when we learned I had parainfluenza (the doctors were in complete hazmat suits, which was a giveaway I had something).  They said there was nothing that could be done, other than having the virus run its course over 5-7 days.  So we packed up, got discharged and went home.  I “napped” in the car, and then again in bed, once we got home.  I don’t remember having much of an appetite on Wednesday either.  I did, however, watch nearly the entire Cavs victory parade on the NBA channel.  Approximately 1.3 million people lined the streets of Cleveland to celebrate.  Exciting.  Remarkable.  Inspiring.  But I still don’t get why a bunch of the guys refused to wear shits.

The highlight of Thursday was getting some alone time with Jake and then hanging with the entire family before we sent him off to summer camp yesterday morning.  Jake and I went to see Central Intelligence in the afternoon (enjoyable movie with an underlying message about the effects of bullying, which continues to be a growing problem).  By the way, I left the car unlocked in a major parking lot with the keys inside during the entire movie.  [I would chalk that up to cancer and “chemobrain,” but as Jen told me, I do stuff like that all the time when I’m healthy.]   We then had dinner at home as a family and all five of us went to Ralph’s for water ice.  I did not feel particularly good, but just looking at my wife and kids made me feel better.  Cancer sucks but I am one lucky guy.

There is a lot to be said about Jake leaving for camp yesterday morning and camp more generally (which I will cover under separate cover), but for now — as I sit here on Saturday morning after sleeping for 14 hours last night — I am feeling better for the first time in a week.  My embrace of the nap may have been a complete head fake, disguised instead as parainfluenza, but I guess time will tell.

Sunday, June 19, 2016.  After falling asleep at halftime on Friday night during the Cavs Game 6 win, I decided I needed to rest up heading into today’s historic Game 7.  [By the way, if you ask anyone affiliated with Golden State, including Ayesha Curry, they will tell you the NBA forced a Game 6 and Game 7 for TV rating purposes.  If that is the case, the Warriors players themselves must have been involved as they missed more shots in that first quarter than I took my freshmen year at Beachwood High School, and as I have said before — and Block and Tannenbaum can attest — Musbach gave me a license to shoot and I was not shy.]  After all, this Game 7 comes on Father’s Day and ABC stepped it up (like with Game 2) and has the game starting at 8 pm EST (not its normal 9 EST, which is brutal on east coasters generally, kids and people that are tired from chemotherapy).

While there are no promises I will make it through the entire game tonight, over the last 50 plus hours, I have embraced something that I always thought was a sign of weakness.  The “nap.”

I have long subscribed to the school of thought that beds are for sleeping when it is dark, and when it is light outside we humans are meant to be moving around.  This was the case for me even in college, when a nap would have done me well on many different occasions.  Naps seem to suggest that you are OK giving up what otherwise would be valuable time to do other more productive things.  I can even remember sitting on the couch this past March and April, with Jen telling me I should get to the gym because we only have a few hours before we are heading out, and falling asleep for a few minutes because I was exhausted.  This was likely the result of the cancer building up in my body, the fact that I couldn’t sleep at night, and that I had coached two baseball games and ran to another game in between.  But anyway you look at it, I wasn’t listening to my body and fighting hard to resist a nap.  I never embraced it.  And why?  What was I so afraid of?  Missing out on a few minutes with the kids?  Not running that extra errand that could undoubtedly get done tomorrow?  Having a few less minutes at the gym?

According to Wikipedia:

A nap is a short period of sleep, typically taken between the hours of 9am and 9pm as an adjunct to the usual nocturnal sleep period. Naps are most often taken as a response to drowsiness during waking hours. Cultural attitudes toward napping during the work day vary. In many Western cultures, children and the elderly are expected to nap during the day and are provided with designated periods and locations to do so. In these same cultures, most working adults are not expected to sleep during the day and napping on the job is widely considered unacceptable. Other cultures (especially those in hot climates) serve their largest meals at midday, with allowance for a nap period (siesta) afterwards before returning to work.

If I have learned anything over the past couple of months, it is is the importance of listening to your body.  If something is wrong, you go to the doctor and speak up.  If you don’t like the answer, you keep going until you get an answer that makes sense.  And if your body is telling you it is time to rest, embrace the nap.  I took three naps in last two days (more naps that I took in 38 years).  It feels good.  I might even take one this morning before I crush a bagel with lox (after all, it is Father’s Day).

But then I watch or read about someone like Craig Sager.  After two days of napping, I am amazed at his ability to broadcast on live television going through what he is going through (I have included a link to the Sports Illustrated article entitled “The Bright Side,” which appeared in the May 2, 2016 SI and I finally had a chance to read this weekend).  Sager has acute myeloid leukemia, which has required two bone marrow transplants (his son has donated twice), 21 bone marrow biopsies and more than 20 chemo cycles.  He has been in remission twice.  [My cancer is quite different from Craig’s — I have T-Cell Lymphoblastic Lymphoma, but it is treated the same as Acute Lymphoblastic Leukemia (ALL).  Each of these diseases (including AML) start from the early version of white blood cells called lymphocytes; “acute” is a fancy way of saying it must be treated immediately for fear of spreading.  I am very lucky that we caught my cancer before it had spread to the bone marrow and beyond.]  As I read about Sager protesting an overnight stay at the hospital, and getting released at 1:30 am so he could do a broadcast the next day, I can’t help but think to myself whether Sager is embracing the nap.  Probably not.  But I’m no Craig Sager.  For me, on Father’s Day, in addition to hanging out with family, getting a few minutes alone with Jen and enjoying a bagel with lox, I want nothing more than to watch the Cavs game tonight with Jake and Ryan (Brandon will be out cold at 630 pm).  Win or lose, I would like to make it through the game with my boys.  So for me, I’m “all in” on a nap or two today.

Thursday, June 16, 2016.   Cleveland may or may not win tonight.  Truth is, we are playing a better team.  When you have LeBron, however, you are never out of a series.  And if Kyrie brings 2/3’s of the game he brought with him to San Fran on Monday, we could hear (for the next 64 hours) the greatest two words in sports:  “Game Seven.”

Whether or not the Cavs win tonight, I am a believer.  I could have worn my Wine and Gold shirt or the original LeBron Cavs jersey.  But instead I am wearing (as of 10 minutes ago) my Believeland shirt (special thanks to Seth L.).

But tonight, I win either way.  Jake Sussberg (9) had to write a mystery story at school recently; his work product made its way home today.  The story speaks for itself.  No doubt he is my boy.  Although I am (obviously) biased, this is well written if I do say so myself.  [Noteworthy that he brought this home today, on the eve of Game 6, and the same day that Jen had me write the first letter to be sent to him at camp (so that it is there when he arrives next Friday).]  While there are all sorts of things in this story that could be deeply analyzed, the bottom line is Stephen Curry goes to jail.  Foreshadowing for the defensive effort from the home team tonight?  We shall see.  Enjoy the story and the game.

Wednesday, June 15, 2106.  “Phase II” of my treatment started 2 weeks ago today.  There were many similarities to today and two Wednesday’s ago.  There were also some important differences in between…

At first I was going to write about each day of treatment, a play by play of sorts.  But then I decided to wait until the first four days were done.  I even thought about titling the first part of Phase II (Wednesday through Saturday (June 1-June 4)) the “4 Game Sweep.”  Other than feeling a little crappy at times for a few limited hours, I felt good pretty good each day.  4 Game Sweep was going to be written on Sunday June 5th.

But we were thrown a solid (and well moving) curve-ball Saturday night June 4th.  At that point, a “sweep” was no longer in the cards.  [I covered all of this in my June 6th post.]  It was similar to how the Cavs (and their fans) felt after we blew out Toronto the first two games of the Eastern Conference Finals, only to lose two games in Toronto and suddenly be in a real series.  Fans were definitely concerned.  Some even felt fear.  But LeBron rallied the troops and the Cavs got it done.

It did, however, seem apropos to write about the last two weeks today.  Today we were in the same room we were in on Wednesday June 1st (K 305-1, Infusion Bed 1).  We even had a consultation with my phenomenal doctor in the same room (Exam Room 10) where I had my bone marrow test on April 27th (the day Chapter 1 was written).  I am a big fan of signs and connecting the dots.  Today also marks my last day of chemo for two weeks, as well as my triumphant return to steroids (i.e., a desire to organize, an increased appetite and little sleep; but all things we are now well aware of and can undoubtedly handle).   And while I call it a “9 Game Series,” this has actually been 15 days of chemo in a row.  [This explains the reason for blood transfusions and low hemoglobin and white blood cell counts, which we were told will likely happen again next week.  Only now we are much smarter about what I should do after certain treatments and when I need transfusions.]  

[By the way, I write all of this NOT for sympathy purposes (trust me, I know how to play that card); this is for me, my family and friends to both understand real time (or close thereto) what is happening and (for me especially) to look back on and remember how we all beat this thing together (the support from everyone has been humbling and empowering).  And maybe this could even help others in similar circumstances understand what may happen or what could come during the course of their treatment.  As I discussed with my doctor today, it is nearly impossible to plan for how people react to chemotherapy.  No matter what you read or who you speak to, we are all different and react to treatment in different ways.  My simpleton take coming out of that discussion:  hearing and reading about what others have gone through, at the very least, helps focus the here and now and adds some color to the side effects you read about in black and white.]

Each morning, for the last 15 days, I have taken two “6 MP” pills.  This is short hand for  Mercaptopurine.  It is a type of chemotherapy used often to treat ALL (acute lymphoblastic leukemia).  One of the side effects, which research suggests occurs in greater than 30% of patients taking this medication, is low blood cell counts (i.e., your white and red blood cells and platelets may all decrease)  .  I am in the greater than 30% (last week I had 5 blood transfusions plus a platlet transfusion earlier today; while my white blood cell counts were low, I was spared a shot today and instead have been taking several antibiotics to fight off infections).  Other side effects include nausea (which I have daily, but have great medication to address); poor appetite (not a problem for me); mouth sores (have not had these in June but did have these during my first hospital stay (as I will explain in unwritten Chapters 2, 2.5 and 3), and these suck); and skin rashes (none to report to date).

On June 1st and earlier today I had spinal taps (known as Lumbar Punctures).  I hate these procedures and get agida if I know they are coming.  Which explains, as I have said before, why Jen does not mention these to me before they are coming.  And even the “chemo calendar” my doctors made is deceiving; it is listed as IT-MTX, so I just assume it is a chemo (which it is, just delivered through the spine).  I even asked today whether there was some coordination between Jen and Natalie (one of the great PA’s) to use “code” and try to trick me.  In any event, I guess I am getting used to these.  And that is good since today was number four of 12.  So I’m 1/3 of the way home!  IT-MTX is code for Methotrexate.  I am fortunate my cancer is not in my spinal fluid (it is one of the places this type of cancer likes to “hide out.”).  But I am getting treatment just as if it was in my spinal fluid, as well as continued tests of my spinal fluid to make sure it has not spread.  The extraction of spinal fluid (for testing purposes) can lead to nasty post-LP headaches.  A way to minimize this side effect is by lying flat, which I have been doing all day and will do tomorrow, and drinking caffeine.  Walking several miles and lifting weights (like I did on June 3) is not recommended.

On June 1st, I also received 3 chemo transfusions, including Cyclophosphamide, Cytarabine, and VCR (better known as Vincristine).  Vincristine is a drug that leads to full or partial hair loss (not a problem for me) and constipation (a real problem for me (on three separate occasions)).  I have had several rounds of Vincristine (including multiple rounds during “Phase I”).   While June 1st and June 15th were long days, the other chemo treatment days (June 2, 3, 4, 8, 9, 10 and 11) were all relatively brief — each transfusion took anywhere from 30 minutes to an hour.  If blood work was needed, the appointment would take a little longer.  Blood transfusions, on the other hand, take about 3 hours.  So last week (June 7 (just a blood transfusion), 8, 9, 10 and 11) were all long days.  This included a three night/four day stay at the beautiful (true) 14th floor in Room 14-228.

Week 1 of “Phase II” was indeed a clean sweep.  Jen was with me on Wednesday (June 1) for the long day and spinal tap (just like she was with me today).  I really love driving into the City with Jen.  There is something so calming about being in the car with Jen (and it is not her driving or ability to navigate with or without Waze).  This is especially true when I have no clue that I am about to get a spinal tap.  The truth is, when she is not telling me to drink more water and nagging me about eating or taking my medication (which in a sick way I actually enjoy), being with Jen is just easy.  I can close my eyes.  Make a phone call.  Pass gas.  Talk to her about important things (the kids) or unimportant things.  Whatever I need to do.  And she still loves me.  She also knows the days that I need her to be there and when she should be there, and of course she makes arrangements to make that (and everything else) happen.   The “book end” days both went fine, including both spinal taps (which Natalie performed with no pain other than a “bee sting” from the numbing medication (but I never did like getting stung by a bee)).  We had a great nurse (Camille), who helped us on each of Wednesday, Thursday and Friday the first week as well as today.  All in all, the book-end days were long (door to door 8 plus hours), but successful.  I did not feel well on the car ride home or the afternoon of June 1, so I was not active.  But in hindsight, especially on the heels of the spinal tap, I should have rested in bed that day (like I did today).

Evan drove me in on Thursday.  Jen gave him very specific instructions the night before and even gave Evan my medication for him to give to me at the appropriate time.  She also asked him to check me in so that I could go right to the small waiting room and avoid the “traffic” and watchful eyes in the main room.  [I haven’t liked that room since April 27th.]  When I was called by Camille, we were led to J-310, Infusion Chair 10.  Not a private room, but definitely private in the sense that a curtain could be closed and there was a wall on 3 sides (although one wall adjacent to the next room was short and you could hear everything going on in the other room).  We chatted for a bit with Camille (something I love to do with everyone) and she told me about her car getting hit the night before while it was parked outside of where she lives.  There was real damage and she was trying to figure out the best way to deal with it (though insurance or otherwise).  I told her my recent car escapades and offered to help in any way I could.  I also told her it could always be worse.  She agreed and said “[a]t least I have my health.”  Amen.  Edward came by when the infusion had just finished and we ended up going to lunch at a place on Madison near the Mark Hotel (of course Edward knew every person to walk through the door, including Wendy who made a guest appearance!).  Nicole was also able to join us.  [In the past I have always had mixed feelings about having “worlds collide” (as it relates to friends from different places), but in the last 8 plus weeks, on many different occasions, it has been so gratifying to see friends of mine from different times and places in my life be able to meet and interact.  As I reflect on these many interactions, I have come to realize that people are meeting because of my cancer but everyone is getting along so well not because of me or my cancer but instead because of the quality of people that I am fortunate to call friends.]  Lunch, which was a great time and very relaxing, was followed by a brief walk in Central Park, including up Cat Hill (which felt better than going up the hill in St. Lucia).  In the times I have been in Central Park, which I ashamed to say is not nearly enough after living in NYC for 12 plus years, I did not appreciate how alive you feel walking through that park in the center of NYC with so many people (young and old) doing so many different things.  I felt good on Thursday until about 2 pm, when we were in the car on the way back.  I got home and took it easy the rest of the day.

Danny L. took me into the City on Friday.  Danny and I go back to our Cuse days .  We met in the airport at JFK in January 1999 on our way to London for a semester abroad.  Syracuse asked people to gather in groups of five for housing purposes, and we got introduced to Danny by some mutual friends who said he would get along with the four of us that had already decided to live together (me, Stu, Jon K. and Ryan K.).  Stu and I had lived together the previous two years (he knew how to put up with me).  Jon K. and I go way back to my Cleveland days (our mothers grew up on the same street).  And Ryan K. is a Boca guy who I met before college started and we were buddies at school.  Danny, however, we had only just heard about.  But everyone who told us about him said we would all get along.  I remember someone saying Sussberg especially.  Whoever said that was spot on.  We were inseparable in Europe.  I say Europe, not just London, because we took some great trips.  We met a few girls and went skiing for the weekend in Switzerland.  I did not know how to ski.  And Danny bought a powder blue onesy ski suit at the equivalent of a Swiss dollar store (at first it was a joke, but I actually think he liked it).  I called him Lloyd (from Dumb and Dumber) for 3 days.  We also did a week plus in Italy, traveling around and staying with friends.  There were a bunch of other trips too (Spain, Prague, Amsterdam).  That was a tough semester for Allan and Janet Sussberg (financially speaking).  I remember Allan asking me if I was going to be flying around the Continental U.S. upon my return, as I seemed to have a knack for getting around Europe.  I assured him this was a once in a lifetime opportunity.  And it was.  The best part of Friday was Danny brought with him a photo album that catalogued our trip and brought back so many great memories.

Danny — you live 15 minutes away in Westchester and we can count on our hand how many times we have seen each other in the last five plus years.  Let’s not let that happen again.  [I have found myself saying this to a lot of important friends in the last two months….]  The other person I met in the JFK airport in January of 1999 was Mark Levine, Danny’s Dad.  Mark was an All-Star in every sense (as is Jane) and there was an immediate bond that is difficult to explain.  We all lost a friend (and Danny lost his best friend) when Mark passed away on September 11, 2009 after a battle with pancreatic cancer.  Danny, I am so sorry your Dad cannot be with you now and go to your beautiful boys’ sporting events and take stock of everything else you have accomplished.  But I know he is up there looking down as proud as can be.

I felt good on Friday.  My brother came to hang Friday afternoon, which is always a good time.  I then got a workout in (4 miles on the treadmill followed by light weights, all while watching the Revenant (great line —“As long as you can still grab a breath, you fight.  You breathe….keep breathing“).  Friday ended with Jen, Helene, Steph and Gary N. all hanging out for a few hours.  I felt good Friday night. [Although I clearly over did it.]

Pete picked me up on Saturday morning.  We had a good ride in, just catching up, but I did not feel great that morning.  As with Evan and Danny, Pete got his specific instructions from the Boss (Jen) and all pills were taken at exactly the right time.  Saturday had a different feel.  Camille was not there and they put me in ST-335 — which was a room that was lined up against a bunch of other rooms and not very private (felt a little bit like a horse stall, but still better than the “Fast Track” room).  The guy across the way (in a private room) had a Giants hat on.  I commented on his hat; he said he hoped the Giants had a better year in 2016 than this past one.  I told him to read Herzlich’s book.  Pete and I then got very busy looking at Wranglers.  I even bid on one on E-Bay (not a brilliant move) and sent my Dad and our family friend to inspect a car that was for sale down in Florida (turned out to be a stinker and I passed).  Looking for cars was a lot of fun and a good distraction.  We were then joined by Uncle Michael and Aunt Sue, who made a special visit to NYC to see me, which I really appreciate.  Sue was also able to go to my cousin Lauren’s shower on Saturday afternoon and then see Jackie and Brett on Sunday following their return from Italy.

Pete, Michael, Sue and I had a great quick lunch near the hospital (I wanted to get home for Jake’s baseball game at 1 pm).  [Unfortunately, one of the things I remember most about that lunch is the father sitting across the way eating lunch with his young daughter who undoubtedly had cancer.  She could not have been more than 5 or 6.  I can close my eyes and see the other young girl walking out with her mother just staring as I know she could not understand why this girl had no hair and was in a stroller.  Heartbreaking to say the least.]  I got to Jake’s game on time, took it easy in the afternoon (as I was not feeling great) and then tried to take Jen to dinner that night after hanging with friends.  That was when the clean sweep ended (see my post on Monday, June 6th ).  [We did not realize this was the result of low hemoglobin (as opposed to the spinal tap).]

Week 2 of “Phase II” was a different story.  Most of this was covered last week in various posts.  I spent Tuesday, Wednesday and Friday night in the hospital getting blood transfusions (and getting to the hospital Tuesday was a real effort as I had to go down the steps on my rear end because of dizziness).  Janet, Allan (who split the week up and spent 7 days here in total) and Lenny all spent full days at the hospital (with several guest appearances from Drew and Alexis).  Helene came to town on Friday and still hasn’t left, helping out in more ways than I can count.  I don’t know where we would be — or how we could do this — without our parents.  Thank you’s will never be enough to demonstrate how appreciative we are.  We are lucky lucky people in so many different ways.  Nicole, Shai and Paul all came to cheer me up and I felt much better than I did on Monday and Tuesday when my hemoglobin dropped into the danger zone (and it is always good to hang with these guys who have been like family for years).  I knew I was in bad shape when I showered on Wednesday morning for the first time since Friday.  And while I am definitely better, I have only been able to shower twice since. This is from a two shower per day guy in normal times.  It is sobering when you don’t have the energy to take a quick shower.

But today, in what became the decisive Game 9, I feel like we came out on top.  With Jen at my side, we had a great conversation with my Doctor, we know what I am going to feel like if my counts go down, and we understand what I should and should not do after a day like today (and more generally going forward).  I took it easy all afternoon and plan to do the same tomorrow.  Am I looking for a clean sweep June 29-July 2 and then again July 6-9 when we have another 4 game series in back to back weeks?  Of course.  But I also know that if my counts drop, that’s OK too.  It is part of the process.  And you roll with the punches and deal with it as necessary.  You live and you learn right?

 

Tuesday, June 14, 2016.   Merriam-Webster’s Learner’s Dictionary defines a promise as “a statement telling someone that you will definitely do something or that something will definitely happen in the future; an indication of future success or improvement; or a reason to expect that something will happen in the future.”  Big takeaway:  you don’t actually have to say “I promise” to make a promise.  And trust me, this is coming from the king of broken promises.  Let me explain.

As soon as I was diagnosed and realized I was going to be home from work for several months, I said I was going to do a lot of things.  Take the kids to school everyday.  Walk around the neighborhood with Jen after dropping the kids off at school.  Use my bike in the basement daily.  Spend hours and hours with the kids hanging out.  The list goes on and on.  Well, I can count on my hand how many times I have taken the kids to school.  Jen and I have yet to walk in the neighborhood.  My bike continues to collect cob webs (and Pelton continues to make lots of money on the Sussberg’s).  I do not get to spend hours and hours hanging with the kids.  [But I do realize — and this is part of my unfinished post from Saturday June 4th — it is not about how much time you spend with your wife, kids, family or friends, but instead whether or not the time is actually meaningful.  And I realized this before I read about Professor Pausch’s take on time.]  It would be easy and completely fair to chalk up all of these broken promises to the aggressive treatment regime that I am undergoing, as it was simply impossible to know how I was going to feel when this all started.

But as I sit here and rely on good excuses for missing out on many things that I thought would have been possible, I am reminded of many previous statements that I have made and for which I have every intention of following through on, but simply do not realize or appreciate what I am actually saying.  I “promise” things all of the time.  I imagine many others do as well.  And it is most always with good intention.  For example, I often tell Jen I plan to eat dinner at home (giving her, as Merriam-Webster would say, “a reason to expect that something will happen in the future”), and then forget to let her know that I had scheduled drinks with someone and that we would probably just grab dinner. [To add insult to injury, I usually forget to call until 8ish pm, at which point she has already cooked something for me.]  Or I  tell the kids on my way out in the morning that I will see them later — not realizing that kids hang on every word — and disappoint them (and Jen) when I’m not home before bed.  [It is heartbreaking to think about the number of times that Jen has called and asked if I told Jake or Ryan (Brandon is still too young and only wants his Mommie anyway) that I was going to be home that night.  I never thought about putting myself in their shoes; it is so easy to say I will see you later, but why say it if it is not a fact?  And intending or hoping to be there just doesn’t cut it.]  I even did this on May 7th, while still at the hospital, when I told Jake I would be home for his birthday (on May 9th) only to wake up on May 8th with a fever that extended my hospital stay by five days.  [Jen came to the rescue here, as always, and blamed it on the doctor, who even got on the phone with Jake and claimed full responsibility!  More on that later, as it is a great story….]  I also have a tendency to try to do everything and be everywhere; I tell people I will attend events all of the time, without really thinking through what I have going on, and feel incredibly guilty when I have to break plans (promises) or otherwise cancel.

I think I have a much better appreciation for Jen’s repeated comment to me about managing expectations, which I fail to do quite often.  I have also realized that when you mismanage expectations you break promises — even when you don’t realize you are making promises.  I have missed more games over the last two months than I have attended (and when healthy I am at all games on the weekends and even some during the week), but WE have managed expectations and not made any promises to the boys about whether or not I can be there. [I use “WE” loosely as this is very much the Jen show and everyone who knows us knows that.]  But as I think about it, if I had a dollar for every time that I have made a statement about someplace I will be or something that I will do in the future, and then not followed through, I would be looking at new Wranglers, not used or pre-owned ones.  As a result of my recent wake-up call and a lot of alone time, I am realizing that the making (and breaking) of these promises is all within my control; yet I cede control by speaking before really thinking and not realizing the consequence of failing to follow through.  If you fail to follow through when you take a shot on the basketball court or swing a bat, tennis racket or golf club, your shots and swings are unpredictable.  I strive for predictability.  And I for one need to be careful about getting myself labeled unpredictable — whether by wife, kids, friends, colleagues or clients — for failing to deliver on promises that I sometimes do not even realize I am making.  Intending to follow through and actually following through are two totally different things.

—————————————

This was something that I intended to post last night but I didn’t get a chance to write it because I was not feeling well and fell asleep (even before the Cavs game).  Jake woke me to watch the first quarter of the game and I fought hard to stay awake.  I was worried all night (and this morning) that he was upset that I was falling asleep after every other possession.  But I did get to watch two innings of his baseball game, which they won, and see him pitch a very solid inning (3 strikeouts and 3 runs) and hit an RBI single that he stretched to a double (another appropriate use of “an” vs. “a” even though there is no vowel at the beginning of RBI).  Wish I was able to stay until the end when they won in the last inning, but I was too cold and asked my mother-in-law to bring me home early.  I was, however, very cognizant of managing Jake’s expectations and letting him know up front that I would likely not make it the full game.  I didn’t even make a promise to him that I would be there at all…..                   

Sunday, June 12, 2016.  Woke up early today (well before 6).  Was good to wake up in my own bed.  Jen was up too.  I checked my phone, sent a few e-mails/texts and looked at my typical order of websites (ESPN, CNN, Debtwire, The Deal and a few others entered the mix because I had time).  Jen and I briefly discussed the Stanford rape case and recent sentencing.  We didn’t discuss the worst mass shooting in U.S. history; the story was just breaking (the death toll was not reported until after 10 am EST this morning).   And I thought the headline on CNN.com was related to the shooting death of Christina Grimmie.  Christina was a 22-year old singer (who appeared on “The Voice”) with a bright future.  She was shot on Friday night by a 27-old year man that it seems she did not know after performing in Orlando.  [It has been widely reported that Christina’s killer had two handguns, two loaded magazines and a large hunting knife.]

I stayed in bed and rested for a while.  Jen even went to the end of the driveway and grabbed my NY Post (which I read first) and the NY Times.  I have not yet finished reading the Vows yet.  But I did read (and think a lot about) the article “Your Faith, My Faith:  Finding Common Ground.    ”  As I read this article before 8 am this morning, including the comment from Mr. Diamond’s mother, I was thinking to myself that life is hard enough as it is; to be unable, because of religion, to be happy and otherwise share your life with someone you love seems shortsighted.  [As someone who is in a great marriage to a person of the same faith, this is very easy for me to say.  I simply do not have the personal experience that others have had (and can speak to) and I am not writing any of this to suggest that people with different views are wrong.  My view is that people should just be happy.  And different things make different people happy.  But everyone should be lucky enough to find love and be happy.  Race, religion, ethnicity and sexual orientation should not stand in the way.  (Reminded me about a wedding announcement I read last weekend between Cecily Koppuzha and Lionel Sotomayor.)]

After helping load Jake’s new iPod for camp (which made me think about a lot of the songs I listened to at camp as a kid), in a text chain with my roommates from college one of the guy’s suggested he was going to have a busy week — he works at CNN — because of what happened in Orlando (the text said “#wtf is wrong with ppl.”).  I just assumed he was referring to Christina Grimmie’s shooting.  Then I turned on the television.  And I haven’t turned it off.  The deadliest mass shooting in U.S. history occurred earlier this morning at a nightclub in Orlando called The Pulse.  The killer was a 29-year old male U.S. citizen who called 911 during the attack and pledged his allegiance to ISIS. [While the killer’s name (like Christina’s Grimmie’s killer) has been blasted on television and the internet, I have no interest in identifying this sick individual by name.  By the way, ISIS just claimed responsibility for this attack.]

I listened to President Obama today.  I just did some research and read that this is the 15th time that President Obama has addressed the nation following a mass shooting during his nearly eight years in the White House.  I too express my heartfelt condolences to the families and loved ones of the victims (many of whom are not even identified at this point), as well gratitude to the law enforcement officers who saved dozens of lives in responding to this disgusting act of terror.  In addition to an act of terror, this was an act of hate.  An act of hate against people who have decided to be happy in their own skin.  Everyone should be happy.  Race, ethnicity, religion and sexual orientation should not stand in the way.  And as I watch news coverage, including of the LA Pride parade that is going forward (a man — allegedly on his way to the parade — with explosives and guns was arrested earlier today in Santa Monica), I am proud to be a citizen of the great United States of America.  This was an attack on our nation and the freedom that we (and people before us) fight so hard to protect (and develop).

There is no room for terrorism.  The U.S. Department of State is fighting the fight against terrorism.  Would be great if we could eliminate terrorism.  But that sure seems aspirational and is going to take a long long time.  So what do we do in between?  The common theme in all 15 of the mass shootings that President Obama has addressed are weapons.  It is being reported that the sicko in Orlando bought assault rifles this past week (no report yet as to where).  I was at Dick’s Sporting Goods a few weeks ago getting gym equipment.  At one point I found myself passing through the “weapons” section.  Do we really need do sell 100 plus different guns (with ammunition) at a sporting goods store?  Assault weapons can be used at movie theaters, elementary schools and nightclubs.  Should we really be selling assault weapons to enable people that are either sick or have so much hate that they are prepared to die for their beliefs?  These are questions only.  I am well aware of the second amendment and every citizen’s right to bear Arms.  I just wonder how we balance this.  As citizens of the U.S., in a country where race, ethnicity, religion and sexual orientation should not matter, we all need to be accountable here.  Thinking about Michael Jackson’s song again……

I finished Jim Boeheim’s book yesterday (entitled Bleeding Orange, which was written with Jack McCallum).  Other than the excellent Syracuse basketball history, there were a few real takeaways (including Boeheim’s view on setting rules and forgiveness).  But today, all I was thinking about were Boeheim’s comments to the media after he won his 900th game on December 17, 2013.  It was three days after the shooting at Sandy Hook Elementary School in Newton, Connecticut.  This is what he said:

“If we cannot get the people who represent us to do something about firearms, we are a sad, sad society.  If one person in this world-the NRA president, anybody-can tell me why we need assault weapons with 30 shots . . . This is our fault if we don’t go out there and do something about this.  If we can’t get this thing done, I don’t know what kind of country we have.”

 

Saturday (am), June 11, 2016.  I turn 39 in January.  In my nearly 38.5 years, I do not remember putting anything together.  Nothing.  Most of the time I don’t even take things out of the box.  I think, subconsciously, that is why I moved to NYC; in NYC, every building has a “super” who can be called on a moment’s notice to put things together [and if the super was not available, I would just wait for Helene to come to town].  If you have not lived in NYC, the super is a person that lives in the building and is effectively there to make things better.  Clogged toilet?  Call the super.  Heat not working?  Call the super.  Someone gives your kid a train track or mini basketball set that needs to be assembled?  Call the super.  You start a fire in your bathtub lighting old bills on fire (true story)?  Call the super.  The Sussberg’s called the super for everything.  And when we moved to Scarsdale, we worked our way through a few different handypeople (I am being politically correct here, but they have always been men), ultimately landing on one who does everything for us.  From the “pop-a-shot” and train set in the basement to house painting, Igor is your man.  That was until Friday.

In the midst of enjoying my new found relationship with Amazon earlier in the week, I ordered the Franklin Sports MLB 2-in-1 Pitch Target Trainer Set for the boys.  Jake really likes to pitch.  But like his old man, he has a good arm and no control.  [This is him last Saturday.  Truth be told, after one of my trusted co-coaches, Gary N., told me to move away from behind the fence, Jake struck out the side.  I thought, like his old man, he would like the camera.  Jake is pitching again at 1 pm today.  It gives me a stomach ache knowing I won’t be able to be there to both watch and coach, but having my Dad there (still one of the most consistent players to grace the Beachwood men’ softball league) — in the team jersey — is the next best thing.]

I don’t know what came over me, but when I got home from the hospital on Thursday and Jake asked — while we were all having dinner — if I could put the pitching target together, I said of course.  So there we were, Allan and Josh Sussberg, putting together the Franklin pitching target in my kitchen.  It comes with idiot proof instructions.  It does not, however, say how long it should take.  [We aren’t completely done (nearly 48 later), but we are really close — just need to hang the MLB target on top of it.]  In any event, I got to say it felt good putting this thing together.  Maybe it was because I was doing it with my Dad (who is about as handy as me), or maybe because it was the fact that I had never put something together for the kids and I think Jake was pumped that I was doing it.  It just felt good.  Yes, there were moments of frustration.  And the jury is still out as to whether we put this thing together correctly (we may have to call Igor after all).  But we did it and, for me at least, it was an accomplishment.  Calling the super or Igor was always an excuse for not having the time because I was too busy or not good at putting things together (both of which are true).   The reality, however, is I took a short cut and paid someone for something I could have done myself.  And for someone that prides himself on working hard and not taking short cuts, this is a pretty hypocritical.  Something to remember when I am back running 100 miles per hour……

———————

Another missed post yesterday.  Becoming a common theme this week.  I’m not an “every other day” kind of guy.  But this was one of those weeks.  Not complaining, just saying.  We have been dealing with low hemoglobin (red blood cells) [also just heard my white blood cell count is low too].  A direct result of chemotherapy.  And since I have given up on playing hero and trying to tough things out, I found myself back in the hospital yesterday night (same room that I had on Tuesday and Wednesday nights) getting yet another blood transfusion.

The transfusion started last night during the second quarter and ended at 1 am.  While my blood is getting tested as we speak, I am confident the transfusion was more successful than the Cavs offense in the fourth quarter.  I am hoping to get chemo this morning and be able to head home this afternoon.  Allan Sussberg, a champ of all champs, drove back and forth yesterday (in my re-tired and re-rimmed car that he picked up!) from Scarsdale to NYC not once but twice (I’m still a huge fan of Andrew Dice Clay).  Allan really was a champ.  He drove me in at 8 am.  After waiting several hours for chemo (because my blood was getting tested), he sat with me in the “Fast Track” room.  It was only an hour infusion so they had me in the room where 4 others were getting chemo too; obviously coined the “Fast Track” room because they get you in and out.  Allan called it: the fast track room felt like McDonald’s with everyone ordering different chemo treatments.  As soon as he said that, I couldn’t get that ridiculous McDonald’s menu song off my mind.  Do you remember it (click on the this You Tube link for a refresher)? I actually sang part of it to my Dad out loud.

Anyway, I probably should have stayed at the hospital to get more blood, but we left and had to come back after I answered the door bell (after getting out of bed early afternoon) and realized I felt the same way I did on Tuesday. [Lenny and Jen knew from the beginning.]    When Allan walked out of the hospital at 11 pm to drive his fourth leg of the day, I felt terrible that he was driving yet again.  But there is always a silver lining; he missed the fourth quarter, which was incredibly disappointing.  And I got to hang with my Dad and brother for a few hours last night, which is always a welcome distraction.  Long week made easier by the fact that Allan and Janet were in town.  Jen, of course, did what Jen always does (which is everything).  But having my parents in town was key.  Thank you guys.  I love and appreciate you both.