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.

15 Day DL

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….