Uno Mas

Sunday, December 18, 2016.  It’s the final countdown (got to love the band Europe).   Stat line and thank you’s to follow.  After four days of chemo — including an early drive to the city yesterday in the snow and rain — I was excited to sleep in this morning.   Probably explains why I was up around 2: 00 a.m. (although I was out cold a little after 9 p.m.; my Mom had to help me get from the couch into bed).

Sleep has not come easy at any point.   Whether it a function of the steroids or just the excitement of actually beating this thing and being so close to the end, I have recently embraced the lack of sleep.   Jen, however, is exhausted (it’s just after 9 p.m. and she is in bed) and I am sure she is sick of continuos episodes of SportsCenter and Diners, Drive-Ins and Dives in the middle of the night.  But she is selfless and makes sure that I actually turn the TV on when I can’t sleep no matter the time.

We have one more day of chemo (Wednesday) before the eight-month protocol is in the books.  And to think I was just getting the hang of this! [This past Wednesday, at the check-up before the four-day blast, I suggested to one of our PA’s (physician assistants) that even though my blood counts were good on Wednesday, it might be a good idea to do a blood check Friday.   Sure enough, after a blood check early Friday am (and feeling lightheaded on Thursday night), I needed two bags of blood.  This saved the weekend and, among other things, ensured I could get to both of Jake’s basketball games (although I missed my nephew’s first birthday today because my white blood count is low and it is not a good idea to be near lots of little kids or otherwise over do it (though I did get to spend several hours with Aunt Lynette and Robert, which was awesome)).   But just when I was about to give myself a real pat on the back, I forgot to take my pills last night because Jen wasn’t home for the first time (she went to dinner for one of our close friend’s birthdays after I assured her that she should go; I was able to stop by early to see everyone, but Jen staying made the reality of one more treatment (and return to normalcy in a few weeks) real.   For the record, it would have been OK with me if Jen wanted to have a Saturday night out with our friends at any point, but that just isn’t Jen.]   We have never been people to wish away time.  That said, as happy as we were to see the holidays coming, we will be just as happy to turn the page on 2016.  Thom Patterson (a senior producer for in-depth digital projects at CNN) seems to agree.   Sleepless nights leads to lots of internet surfing and I recently came across Patterson’s year in review type article, which begins as follows (link to full article at the end):  “Dear 2016, Pack your bags; we’re done.  It was one disappoint after another with you.  Just how bad were you?  Let us count the ways.”  Speaks for itself.

Blood check and check-up tomorrow followed by a day of rest Tuesday.   Not sure there is anyone else in the world (other than Jen) as excited about a chemo treatment this Wednesday.

Problems

Thursday, December 15, 2016.  Probably worth adding this to my “observations” from last night, but the timing of some of the things I saw and/or discussed with people today warrant a quick standalone post.

Throughout these last eight months I have often said (to anyone who will listen) that while this whole thing has sucked, it could always be worse.   Along these lines, I love the famous quote from Regina Brett: “If we all threw our problems in a pile and saw everyone else’s, we’d grab ours back.”

What are your problems?  We all have problems.   And that is not to say that each of our problems are not real or otherwise important to address.  For me, the takeaway is making sure you keep your problems in perspective because I truly believe things can always be worse.   This certainly does not solve your problem(s), but when I put my problems in context — relative to problems that others are dealing with — my problems seem easier to solve.   [This is all new for me and I am not giving advice or attempting to trivilaize anyone’s problems.  Simply sharing my view and new perspective.]

We checked the box on another chemo treatment today (just three more for the year), got the “green light” to stop the twice daily Lovenox shots, and started on a medication to reduce the significant swelling in my feet, ankles and legs (from the steroids and daily chemo pills).  I was in a good mood heading into chemo even though I couldn’t tie my shoes and had to wobble down the hall.  [As an aside, Jen just pointed out (and I am well aware every time I put them on), that I am wearing sweat pants today that I bought on August 28, 2004; the day we got married.  Jen told me she was wearing sweat pants on the plane when we left for our honeymoon that next day.  My mother always told us we needed to “dress up” when we got on a plane, so this was new to me.   I made my Dad walk over with me to the mall near the hotel, and the rest is history.  The sweats themselves have seen a better day but they are still the most comfortable pair I own.]

As I waited to be called for chemo, my Mom and I sat in the “East” waiting area (she drove me back and forth today (no comment on the driving Mom)).  This is where I always sit.   The “main room” is intense and crowded.   In fact, I reminded my Mom today that this was the same waiting room we sat in (and where I passed out after my first and only bone marrow test) on April 27, 2016.   She remembered.

There were two middle-aged men sitting in the room.  I said hello to both and made a comment that one of the guys had a nice set-up (he had an effective work station in the corner).   [I am a friendly person.   I like people and I enjoy talking to everyone.   Sure there are times I am quiet, but I am a big subscriber to the “it is easier to say hello theory,” and it inevitably leads to conversations and hellos down the road.  These last eight months have been no different (whether it be the hospital staff or people in the waiting rooms/hallways).]    

The guy with the set-up commented that he was trying to “log in” and work, but that it was not a secure network and it was restricting his ability to get anything done.   We discussed how silly that was for a few minutes and I said hello to a few of the nurses and doctor assistants that walked by.    The other guy commented that I seemed like I was in a good mood.  I said I was both in a good mood and very lucky, which led to a discussion about “my story” and status.  Both guys commented and smiled.   I then made the mistake of asking the guy (who asked about my good mood) how we was doing.   When you ask that question in a cancer lounge, you have to be prepared for the answer.  His response was “not good.”   The guy with the work station suddenly got busy.  To make a long story short, while he did not have cancer, he was being treated for a rare genetic disorder and nothing seemed to be working to solve the issue for the past eight months.   He has been sick and unable to work, which is a problem because he owns his own business.  To add insult to injury, he learned yesterday that his insurance company was changing his plan and it was unclear if he would have coverage in 2017.

As I was saying I was sorry and shaking my head, a man with no legs in a wheel chair came into the room with his wife.   I noticed he was wearing a Notre Dame football t-shirt (he sat right in front of me), and I immediately asked him if Brian Kelley was coming back.   It led to a five-way discussion (me, the two men that were there from the beginning, the man in the wheel chair and his wife (my Mom sat quietly in the corner) — about college football and college athletics more generally.   I was wearing a North Carolina hat (which I wear often simply because it fits) and we ended up talking about ACC basketball and the fact that the Barclay’s Center would host the tournament this year.  The wife of the man in the wheel chair got excited because she said her son, who graduated from NYU, got them tickets to that stadium last year and they loved it.   The guy who was talking about his business failing and losing his insurance jumped in to mention that his daughter played college soccer in Vermont and he never missed a game.  Even the guy buried in his work station jumped in when I mentioned they needed to watch an ESPN 3o for 30 about the original coaches in the Big East Conference as a follow-on comment to the man in the wheel chair telling everyone that he once got to met Lou Carnescca (the legendary St. John’s basketball coach).  A moment later they called my name and I said goodbye to everyone.   While I was happy to leave the conversation at this point instead of when I had nothing to say other than “sorry,” it was not lost on me that the man in the wheel chair with no legs was the reason the conversation ended on a better note.

My chemo session was in the “Fast Track” room today.   It is an open room where six people can get treatments at the same time.  Such a personal thing in an open space can be awkward, and I try not to stare.   Sometimes people will engage in conversation (I spoke to a young woman yesterday (late 20’s/early 30’s) who had a kidney transplant a few months ago and was still recovering, getting treatments etc.  She was unable to work because she has been sick and her blood counts are low.

Today was a particularly tough day.   There was an older man getting shots right across from me and he was talkative.  But he left before I started.   Next to me was a little girl — maybe 12 or 13 — with a woman who I believe was her mother.   The mother basically said nothing the entire time.   She didn’t look up from a notebook she was scribbling in.    The little girl was not doing well.   As it turned out, she had a liver transplant recently and this was one of her first follow-up treatments.   She was getting some type of infusion for more than 5 hours.   And the doctors and nursing staff had to rush in because she was having trouble breathing.   The little girl engaged in the dialogue with the doctors and she was very sharp.   She knew exactly what medications she was taking, when she had taken them and all the details in between.   But this little girl was hurting and I heard her tell the nurse (not her mother) that she was very scared.   The mother whispered a couple of things to the girl, but I never really heard her speak or raise her head.   My chemo ended, my mother left to get the car, I thanked the nurses and staff who I have come to know so well, and I wobbled out of the room shaking my head yet again.  I have been thinking about that young girl all day long……


 

It was announced this afternoon that Craig Sager passed away at 65.  I wrote about Craig Sager on July 18, 2016.   He died after a battle with acute myeloid leukemia starting in 2014.   A terminal diagnosis didn’t stop Craig from undergoing three different bone marrow transplants and lots of chemo treatments, which enabled him to continue to do what he loved for as long as he could.

Being told it is only a matter of time before you die is a problem that I suspect many of us would not be so quick to “grab back.”   But Craig Sager took a different approach (as he explained when he was honored with an ESPY award this summer).

“Whatever I might’ve imagined a terminal diagnosis would do to my spirit, it’s summoned quite the opposite — the greatest appreciation for life itself.

“So I will never give up. And I will never give in. I will continue to keep fighting, sucking the marrow out of life, as life sucks the marrow out of me. I will live my life full of love and full of fun. It’s the only way I know how.”
Continue reading “Problems”

Observations

Wednesday, December 14, 2016.   Being able to write this post is cathartic in and of itself. It is a post I have thought a lot about.  And I definitely was focused on getting to the end and being able to include some of these observations.   Some of these points I wrote down in a notebook at the beginning.   Like the blog posts in July, August, September (0), October and November (a total of seven (7)), there were lots of notes at the beginning.   Those notes, however, soon trailed off and ultimately ceased entirely.   Although I did carry around my red OfficeMax notebook marked “Suss” in my back-pack for most hospital stays/trips, the urge, desire, energy and, at times frankly the state of mind, kept me from pulling out the notebook.   Or adding a post to this blog.

I guess what I am trying to say, and it is likely an “obvious” observation for anyone following along, is that there were days, weeks and sometimes months in a row that I didn’t feel like writing anything.   At first I felt like I was letting myself and others down.   [I am not looking for sympathy here, just being candid.]  After all, when the blog was created and I debated whether I was actually going to write anything, the purpose was to keep people posted on what was going on.   But there was no scope of work or set number of posts to be made.   And although I came sprinting out of the gates in May and June (posting something nearly every day), when the initial euphoria of this experience (and medications that keep you up at all hours) starts wearing off  — as so many people said it would and I will explain below — and I really started feeling the cumulative effects of the treatments in June/July, the postings (and notes) slowed down.

The guilt of not posting then turned into questions of whether the lack of a post was because I wanted to avoid being negative or simply didn’t have something interesting to say.   I also realized, and was reminded by those who unfortunately had to deal with me on a daily basis (I am a pain in the ass without cancer…), that this blog was for me.  So if I did not feel like writing, there was no reason to write.

It is not a coincidence that I have felt the urge to post again in last the couple of weeks [my little notebook was filled with various ideas on blog posts at the beginning (some of which I am going to try to knock out here before “the end.”)].  After all, we are literally less than a week away and the emotions of actually being done are overwhelming.   I feel like I felt at the beginning (this is effectively observation #1), when we were reminded how lucky we were to have such an unbelievable support network of friends, family, community and colleagues who made sure to lend a hand and their support, literally keeping the focus away from some of the scariest and most surreal days we personally have experienced.   That support has been there non-stop and we are so blessed and forever greatful, but as you get into the grind of what has been a long eight months, things in life naturally slow down.   We are so lucky that we get another chance to speed everything up (and we are so blessed that the support never let it up, it is just impossible for things to continue at the torrid pace it starts when something like this happens or if you have unfortunately been through something that brings people you care so much about together….)

Had a blood test, check-up and chemo this morning.   The blood counts were great even after a four-day week of chemo last week.  Chemo today was a breeze (just four more to go!!!).   [After 8 months and having trouble getting the IV in over the last 6-8 weeks because it has happened so many damn times and I am running on empty, I finally took Jen’s advice and spoke up about having Judy come insert the IV (so as to avoid potentially getting pricked multiple times).  It is no offense to any other nurse, all of whom are talented and really good people who dedicate their lives to patients who come to a place where no one really wants to be.   But I hate needles and the stress of the whole process is enough, so why not just speak up?  Seems simple.  Only took me 7 plus months to actually say something.  See below…].  And notwithstanding that I am incredibly swollen all over from the steroids (literally having trouble walking); have a mouth sore for the first time since May; bled through my shirt and all over the sheets last night from the continued beating I have been taking from twice daily lovenox shots (great having my mom here for many reasons, including because she is a perennial all-star in making beds); and obviously don’t feel or look like myself generally, WE ARE SO DONE with what has been a pretty grueling eight months.  I am so excited to get back to everything that we missed, yet at the same time hold on tighter to so many things that we have gained.

Long way of saying that I know there were people that were concerned that the lack of posts meant something was wrong or things had gone in a bad direction.   I was definitely NOT intending to worry anyone.  I simply posted when it felt right and I felt like I had something meaningful to say.   Looking back, I might have added some posts when it didn’t necessarily feel right, or might have been a bit negative, because that could have have been something for us (and others) to look at down the road and otherwise reflect upon.   But the lack of a post says something too.   I get that and always appreciated it.  Bottom line:  no regrets and (certainly not looking — or going! — back).

So on to the observations, which are included in no particular order.   And I am fully reserving the right to use the “Edit” button on this page (which happens often after Jen reads a post in the morning and yells at me about typos).   But this type of edit could be a missed observation in a few days, weeks or even years down the road (feels great typing that and even better underlining it).   So onto a few observations…….

  1. You don’t necessarily lose your hair.   I would have welcomed by Grandfather’s standard male pattern balding going away forever.   Been shaving my head for 10 plus years on a daily basis and it would have nice (for me) to simply be bald.  Just didn’t happen.   I still have hair in all the places I never wanted it (although my eye brows are in still in tact, just thin).   I lost hair in places no one would ever see.   This is not a complaint nor a problem — just an observation.
  2. You need an advocate in this process.   Some people take matters into their own hands.   I am that type of person with most things.  But it wasn’t the case with cancer.   I had trouble speaking up.  I was focused on just doing what was told and not complaining or asking questions.  I joke that I still don’t know what medications to take.  It is the truth.  Jen puts on rubber gloves and inserts my pills into a pill box weekly.   She also reminds me every day to take them.   If Jen couldn’t make a check-up, she would text me questions or make sure I patched her in on cell (at first it drove me crazy).   Truth is, I couldn’t handle it at the beginning and than never needed to.   [Thank god for Jen.  I said it before, but I would be wandering around White Plains in a hospital gown with my ass hanging out if she was not in my life.   Jen takes charge of things and this was no different.   She took charge the moment she walked into White Plains hospital.   She was just as scared as I was.   But there wasn’t time for her to screw around (in fact, I only saw her lose it once in eight months (Tuesday April 26, 2016), and she walked away from me just as quickly as she started to cry because she did not want me to see her hurting).   She owned this.   She owns this family; because of Jen, our kids still believe I have a little infection and I am going back to work in a few weeks because everything is fine.   She was right that we didn’t need to worry them unless we needed to.  She did everything for me and was my advocate every single minute of every single day.  She asked the questions because I was too chicken or otherwise didn’t want to speak up.   She fought when she needed to fight.   She forced me to do things (like drink an incessant amount of water).   She got on my case when she needed to.  She let be when I needed to be alone.  Whatever I needed, Jen was there (and she always is, even before she had to take on cancer).   I could have started this observation by saying “You need Jen in this process,” but there is only one Jen and she is mine.   And don’t get me wrong, Jen can drive me crazy and we have some fights and arguments like everyone (usually over the most ridiculous things), but you sometimes realize just how lucky you are in the worst of times.   There will never be a day that I do not truly appreciate my greatest accomplishments in life — marrying Jen and having three unbelievable boys who we get to raise together.]   Everyone needs an advocate.   Sometimes the patient is strong enough and smart enough to be their own advocate.   Anyone in this category should be commended.   But no one should have to fight something like this alone, although I am sure there are many people out there who need both an advocate and an extra hand.  Whether it is a mother, brother, sister, partner, wife, husband, cousin, friend — if you cannot be your own advocate, you need someone that is in the know who can ask the tough questions, push back on someone when you simply can’t (or don’t want to) and generally take charge when you just can’t do it yourself.     And for those of you like me, it is OK to raise your hand and let someone help.
  3. You can’t “live” in a bubble.  I have stacks of books about cancer and how to live a life that avoids cancer.   Thanks again to many of you for sending.    A few I read, others I skimmed or glanced at, and a few remain untouched.   I might read some down the road.   But I probably won’t.   You just cannot follow or keep track of everything.  If you did, I am not sure you could walk outside without appropriate breathing gear or otherwise consume any food that you did not prepare yourself.   This world works because people get to make their own decisions.  Some opt for extremes, while others take a more moderate view.   [Please know this is not advice, just my own personal observation.]  I certainly intend to change certain things.  For instance, if I know something has chemicals in it that has been proven to cause cancer, I’m not going to use.   No more artificial sweetener in my coffee.   I am going to use an organic dry cleaner after finding out that lots of dry cleaners (including the one we have used the last 5 years), use (or until recently used) a chemical called Perchorethylene (also called tetrachoroethylene).  There is a study suggesting that this chemical can cause non-hodkgins lymphoma.   I do not think there is a correlation between my cancer and this chemical, but since I now know of this fact why not change to a chemical free dry cleaner?   Some of these cancer books tell you never to use deodorant.   I am going to use deodorant.   But I am going to make a switch to one that is recommended by doctors (including one of the most famous pediatric opthamologists in the world) and does not contain aluminum.  I am not going to change all that much else.   I am going to continue to watch the things that I eat (and certainly avoid putting a bunch of chemicals into my body that I did not appreciate were present in so many “low” and “fat free” foods), but I am always going to enjoy something I want (though I will attempt to so in moderation).   Otherwise I will not feel like I am living.  After all, there are people that are complete models of health, who never put an excess calorie or anything potentially harmful in their body and otherwise exercise constantly.   And when you hear about someone like this dying way too young or from something tragic, it makes no sense.   Other people smoke 2 packs of cigarettes a day and live until they are 90, dying of natural causes.   We all have views, but I am not sure there is a right or wrong answer.   We certainly think we have a decent handle on what “healthy” actually means.  [I don’t intend to start smoking by the way.]  My sense is it is something you have to account for, but it can’t get in the way of living and enjoying certain things.  Like the rib eye steak and martini that I am going to have on my birthday in a few weeks at Del Frisco’s.  Followed by a piece of lemon cake for dessert.   [I’m not a dessert fan and frankly would prefer a slice of turkey to a cookie.  But I like the lemon cake and I am going to have me a piece (Lenny, stop cringing!).]
  4. Think outside the box.   This ties into my observation about having an advocate on your side, but there is a lot more to it.  Lots of people love to say they are outside the box thinkers.   And if you want to be successful, thinking outside of the box is a sure fire way to get there.   (Even as it relates to things you are not an “expert” on).   Some people think outside the box but don’t stand up for what they believe in or otherwise allow others to tell them their ideas are non-sensical and should be discarded.   And as I now understand from the most famous pediatric opthamologist in the world (who also happens to be my father-in-law), you are not thinking outside the box if you let someone dissuade you from getting your point out there in the public domain.   Lenny got interviewed for Harvard Medical School by Dr. A. Stone Friedberg, who would later become his mentor.   I have heard a lot about Dr. Friedberg on our walks (and even more so in a conversation tonight).   Dr. Friedberg was the Chief of Cardiology at Beth Israel Hospital in Boston.  In 1940, he discovered that it may be possible to treat ulcers with antibiotics.  But as Lenny explained to me (and as you can read in Chapter 13 of the book by Robert W. Winters, M.D. entitled Accidental Medical Discoveries: How Tenacity and Pure Dumb Luck Changed the World), Dr. Friedberg was told he was crazy and that he should move on.   He unfortunately listened.    And as a result, ulcers were treated with intense cancer therapies for the next 65 years.  But in 2005, the Nobel Prize was awarded to two doctors who effectively implemented what Dr. Friedberg had already discovered yet simply did not pursue.  This is something Lenny never forgets and lives by since these antibiotics could have been curing ulcers since 1940 (and Dr. Friedberg could have been the recipient of the Nobel Prize).   Lenny even gave a speech on this over the summer to Harvard medical colleagues (I would include the power point but after scanning it, it is effectively in a foreign language).  Lenny has had views in his field that have been laughed at and mimicked, but he pushes them because he always remembers Dr. Friedberg.  Turns out it was a good thing Lenny pushed some of his “thinkings” forward; people stop laughing when they realize something works and revolutionizes a field.   You just have to be able to have the backbone to stand up for what you believe in, even when you get booed.   (Obviously this applies in all aspects of life and it is way easier said than done).    My Uncle Michael coordinated with Lenny the day I was diagnosed, and I was able to get to the best doctor within 24 hours, which was critical because every second that I wasn’t being treated counted with the nature of this cancer.   I am forever grateful to Uncle Mike, Lenny and of course Dr. Roboz.   And as much as Jen has been the advocate among advocates, I also have had the best pediatric ophthalmologist in the world become an oncologist in the background at first (and then the forefront after I embraced it with open arms) because he loves us and is willing to think outside the box about everything.   From nutrition, to water consumption, finding me the right deodorant, identifying the “correct” articles to read about my disease, answering questions that randomly popped in our head, the list goes on and on.   Lenny was never trying to be an oncologist, he was just trying to make sure that some outside the box thinking was done so that we did everything in our power, both on the margins and generally, to take on this challenge.   Again, you don’t need to be an expert or doctor to think outside the box.   Yet this is another place I just wasn’t willing to go.   And just like with Jen, I am one lucky guy to have a Lenny in my corner.   If you aren’t able to think outside the box, finding someone who can and is willing to do so is a beautiful thing.
  5. You may not lose weight during the course of chemo.   For someone who has worked out for many years and was always conscious about weight, to hear that you should eat whatever you want because you are going to lose significant weight (and we have all seen pictures of people that have lost a tremendous amount of weight during chemo), can be a magical thing.   I took advantage at the beginning and ultimately felt disgusting.   So I changed my eating habits.  At first, I went from one extreme to the other (cutting out just about everything).   The only time I lost significant weight was when we couldn’t control my nausea in the summer; this lasted a very brief time (I am still on a significant amount of medication for nausea and throw up every so often).  But for the most part, my weight has been the exactly the same as it always has been.   [That said, and notwithstanding all the weights I bought for my basement, I can count on the number of hands how many times I did anything other than walk outside or on my treadmill (which I did a good amount of).  So lots of lost muscle and time in the gym to make up for — which is a great problem to have.]   Am I the first person in the history of chemo not to lose weight?   Who knows.   But I have been on and off steroids (which are a huge part of the treatment protocol) for the last eight months, and that causes weight gain (and swelling).   The observation here is a little deeper than suggesting you may not lose weight during chemo.   We are all different and there is no set way for any person to respond to chemo treatment.   I look at lots people on the third floor of NY Presbyterian Hospital every day and recognize that the “side effects” are different for everyone.   And while you never really get comfortable with any of it, you do realize that you are fighting something bigger and losing sight of the target forces you (at times) to take your eye off the ball.
  6. It is OK to cry and be deep.  I definitely have a different perspective on things at the moment and for me, it is a function of the last eight months and having my life flash in front of my eyes.   Definitely did not ask for this, wouldn’t do it again (unless I had to), and know we aren’t done (three years of maintenance treatment await and we fully understand that this is all about making sure this does not come back; we also get that if you keep thinking about whether this is going to come back, you can’t live).   But the truth is, you don’t have to get cancer to be able to put things in perspective more regularly.  I am frankly jealous of many people who are able to accomplish that without having to go through something like this.  I always talked about the proper perspective, but the reality for me was that it took a tough moment or real gut check to take the time to think through what that perspective actually is.   It is now different, at least at the moment, and I feel like I have my head around the right perspective (for me) on a daily basis.   When I lose my cool or get bothered by something these days, I actually think about it and try to pause.   (This is not to say I am no longer a hothead or over analyze things and comments for no reason).   I did, however, let myself cry more in the last eight months than I did in 38 years, and I suddenly have no problem getting into some deep thoughts with anyone who will listen.   With a complete win in sight and only four days of intense bonus chemo left (together with the tremendous and humbling amount of support that allowed me and my family to focus on one thing and one thing only), it is easy for me to say that as much as I want this to end (and have wanted it to end the entire time), I wouldn’t trade the experience.   But I think the real observation, for everyone and not just people battling cancer, is taking a time-out or a step back and putting things in context is never a bad thing.   And it’s OK to let yourself cry and get lost in a thought that other people may not understand.
  7. The list goes on.   I reserved my rights above and I have a good feeling that this is an “open” post with more to come in time.

   

Bright Light

Monday, December 12 (into the 13th), 2016.  So cliche, but sometimes you just need to see the light at the end of the tunnel.  The goal posts moved on us in the fall because I frankly wasn’t paying enough attention (and reading all the wrong stuff on the internet).  And while I was disappointed, I knew what was at stake and that we would get there.  [To say scary and strange thoughts don’t go through your mind at various and completely random times after something like this happens would be a complete lie.  That said, if you aren’t positive and confident then you can’t make the most of the moment, even when the “moment” might suck.   Easy for me to say (especially now), yet I think I have been consistent.  [Even when we were told (wrongly) on day three this was a jump ball.]

But a couple of weeks ago, when the end of 2016 was really in sight and there were no more delays, even for a couple of days because of blood counts etc., things just clicked and the light was actually on.   And just so the record is clear, this was before — and in between — my current week on Dexamethasone (which I have been on and off of for 8 months).   Dexamethasone is a steroid.  Among other things, it masks pain and makes you wired.  Since Wednesday of last week the dosage is 20mg/per day (tomorrow is the last day).   For the first 26 days (in April and May) it was 125 mg/per day of Prednisone (another steroid that is even stronger).  To put this in context, last night I passed out watching the Giants game with Jake at 9:00 pm and slept until 4:30 am.   It was the first time I slept more than 2 hours since last Tuesday.   And I feel good right now (it is 2:21 am and I had a full day).   I felt good in April too but it was just different…..

  • We had Ryan’s parent/teacher conference today.   I was pumped to be there.  And I was so proud of him.   We took him for 16 Handles yogurt after (he actually left school at lunch today because he wasn’t feeling fell, which is a story in and of itself).  [He is totally fine and I will not embarrass him here because he is going to read this one day.  Ryan if you don’t remember what happened when you see this make sure to ask —  I will not forget it.  Feel bad it happened, but I loved having lunch together and watching one of our new favorites shows together (Diners, Drive-Ins and Dives).]  As we were walking into the yogurt store, which usually gives me a stomach ache, I told Jen and Ryan I was going to run into the drug store down the way as I “needed” a few things.  No questions asked, Jen gave me the credit card.   I bought a bunch of things I do not need.  But I really went in there because I know they sell the small containers of things for travel that are easily checked through your carry on bag.   A little sick, I know.   It felt so good to buy this stuff (lots of which I will never use) for so many different reasons.

 

  • I have been unplugged from work during this journey.   I have certainly talked to my partners/friends and many people in the restructuring community over the last 8 months and am generally familiar with what is happening, but the focus has been getting healthy.  I can’t thank my partners and firm enough for having my family’s back in so many ways to make this possible.   I am fortunate and completely aware that this is not the case for everyone.   And I am also fortunate and completely aware that not everyone gets to plug back in.  But a few weeks ago, with that light really on, it suddenly felt that plugging-in wasn’t just going to happen at some point.  It was going to happen soon.   I am far from plugged in (Jen and I are going to the mall tomorrow am and we ran errands together today) and I know it is going to take some time before I am in game shape (after 5 more days of chemo between this week and next), but knowing the return is in hand makes a big difference in the mental game.  You can actually reach for the plug and talk about it.

 

  • I walked on the treadmill today for the third day in a row.   I walked a good amount (and even worked out a tiny tiny bit) over the last 8 months, but I embraced a lack of activity at various times.  I procrastinated today but got myself on the treadmill at 7:30 pm.  That would not have happened a few months ago.   I also ordered dinner and made Jen pick it up (after she put Brandon and Ryan to sleep).  As selfish as it felt, it felt normal because I knew I needed to exercise (which is why Jen and I work well together).   And this isn’t to say that I have done more around this house in the past 8 months than I usually do (doing more vs. being around are two totally different things and Jen has always done everything for all four of us, more so in the last 8 months than ever).  Even though Jen commented that picking up food was the last thing she wanted to do at 7:40 pm, I think she kind of liked the feeling too…..have I mentioned I love my wife, always knew I outkicked the coverage when she married me, but really got to appreciate her strength and courage during a time that was harder for her than anyone else by a long shot?  And, while I may be bias, I don’t think you will hear anyone challenge that she is a super mom in every sense.

 

  • I went to the end of Jake’s basketball practice today because I knew I could and in just a few weeks, it is not going to be “as easy” to get there when things return to normal.   I get that and appreciate it.

 

  • I am pretty sure I have a good perspective on who I am and what is important.  I know I will never take my health for granted.   But actually being concerned that I keep this new perspective 6 months or even 6 years down the road is a great problem to have.   That too I appreciate.   I think monthly chemo treatments with quarterly spinal taps for the next three years will be a good reminder, but I don’t subscribe to this “is all a bad dream that you will forget in no time” theory.  Dreams are dreams.   Reality is different.  I am pretty sure I have changed.  The proof will be in the pudding.   Again, a great problem to have and one I am happy for people to remind me of if there a loss of focus.   But I am not planning to do anything all that different or make any significant changes.  I am just going to be a little smarter, more reflective and hopefully able to keep things in perspective regularly (not just when you’re forced to).  And as the great Gary Newman (who I got to spend time with earlier tonight) told me in late April, I am going to continue to subscribe to the “don’t think; just play” mentality.   I think about this a lot and say it all the time.   Just four words that are easy to say but hard to actually obey.  [Jake got a note from me yesterday making two points before his basketball games, this one included.  Ryan will get one later this week before he has a basketball practice.  Not to worry Big H, I have so much material from your boys and I intend to use it all.]

 

bightennis@aol.com

Saturday, December 10, 2016.  We had a chance to catch up last night with our close friends Ian and Namoi Arons.   Ian and Naomi live here in Scarsdale and we have been friends since we moved to town around the same time.

And we have lots of connections.  Jen and I went to Cardozo Law School with Naomi.   Ian’s brother Andrew, who recently joined the private equity practice at Kirkland & Ellis LLP (looking forward to finally seeing him in the office in a few weeks!), and my brother Drew, share a brother-in-law in comm0n.   [I always have trouble explaining this in an orally coherent way, but I think I just nailed it in writing by avoiding details.]  Hoping the “other” Arons’ and Sussberg’s move out to Scarsdale soon….

It has been a tough year and half plus for the Arons family to say the least.     Howie Arons a/k/a bightennis@aol.com — husband to Roni; Dad to Ian and Andrew; father-in-law to Naomi and Ashley; Papa Howie to his four grandchildren; and tennis coach to thousands over a 36-year career — was diagnosed with cancer that actually could not be diagnosed.  Howie passed away on October 13, 2016.   As I have learned over the last several months, including through incredible tributes to Howie at his funeral from his sons, ex-players and best friends, Howie was one of those magnetic people that made a difference in — and touched — so many lives.  The tribute to Howie below, which appeared in the TimesLedger on October 21, 2016  , says it all.


BELOVED CARDOZO TENNIS COACH HOWIE ARONS DIES AT 67

BY LAURA AMATO

The Queens athletic community lost one of its most prominent and successful names Thursday when longtime Cardozo tennis coach Howie Arons died after battling cancer. He was 67 years old.

Arons was a dominant presence with the Judges throughout his 36-year career, leading the program to a whopping 18 PSAL city championships. His leadership on the court was electric and while he retired from Cardozo in 2012, Arons’ legacy is something the Judges will never be able to shake.

“He was always the most positive, exciting person,” said Cardozo boys’ basketball coach Ron Naclerio, who considered Arons both a colleague and friend. “During the course of the year he would call me and I would call him and he would tell me how things were not going well, but he was so positive about it. He just told me, ‘I’m always going to keep fighting.’”

During his time at ‘Dozo, Arons racked up 584 career victories and just 51 defeats, but it was what he did once the matches were over that truly set him apart from other coaches in the area. Always ready to lend an ear or help finetune a serve, Arons’ relationship with his players was the defining characteristic of his coaching approach.

“I look at the history of this school and what it’s meant to me in my life,” Naclerio said. “And these big names were like my uncles and Howie Arons was my big brother. He always made you feel so good. He was just one of those people who walked into the room and he made everyone feel good.”

In addition to his work at Cardozo – where he was as an English teacher and eventually dean of the school – Arons also served as the co-director of the New York Tennis Academy at Great Neck Estates, sparking a successful junior program on Long Island.

He also ran the junior program at Alley Pond Tennis Center and devoted much of his time to helping foster an early love of the game for players across the area. In 2015, he was the recipient of The Vitas Gerulaitis “For the Love of Tennis” Award and was also a member of the Cardozo athletic Hall of Fame.

All of Arons’ hard work paid off – he saw more than 80 players move on to the Division I level, including both his sons, Ian and Andrew.

“If I had to say there was a Mt. Rushmore of Cardozo athletics and there were three or four people that had to be on it, he’s easily one of them,” Naclerio said. “Not just athletically, everything he did.”

Arons had not spent much time on the court at ‘Dozo since announcing his retirement, but the longtime coach was still regarded as one of the most important figures in the Judges’ storied athletic history. Naclerio knows that reputation won’t change any time soon either.

“One of his former players called me last night and told me that he’s meeting with a couple of guys, graduated in ‘83 and ‘84, at Cardozo so they can all go to the services together,” Naclerio said. “That’s the kind of impact he had. He said he never saw a teacher so enthused as [Howie] was. Thirty years later and he remembers that.”

Arons’ funeral will be held this Sunday, Oct. 16, at 12 p.m. at the Star of David Chapel, 1236 North Wellwood Ave., West Babylon NY 11704.


 

I only wish I had known Howie better.  From the couple of e-mails we exchanged this past May, you just knew you were dealing with a special guy.  I checked in with him to see how he was doing, noted I would love to get together if we could make it work, and told him that I was sure he was proud of his impressive and successful sons.   And I told him “there was so much to live and fight for.”  Ian, like so many of our friends, was at the hospital religiously during that “emergency” three week stay in late April and early May.   I only learned during some of those visits that the Arons family had been dealing with the same thing for many many months with his Dad.

Howie’s response?

“Thanks sooo much Josh there is not a day that passes that I don’t think of you and your beautiful family. I know you are going to win and beat the crap out of this shit I know it and I really appreciate this note from you. Love yo man Howie can’t wait to get together.”

I remember thinking immediately that Howie was selfless.  Not a word about himself.   This was evident in his email to me on May 22, 2016 (prompted after reading a post I entitled “Distracted,” which was caused by my “coasting” (after totally losing focus) into the curb on Heathcote Road with my brother-in-law and Jake in the car on the way to baseball team pictures).

“What’s up Josh the distraction is part of the Chemo Beast It’s called chemo Brain. After my 3rd treatment I drove to great neck. Middle neck rd. Tried to park saw a spot I I pulled in and hit another guy pulling out. Don’t know how I did it but was my fault. This chemo shit is powerful and we must more than focus. Roni drives at night because I get tired Go slow no hurry for anything stay in the now when possible. Believe in yourself”

Howie was taking his experience to make sure I felt better and believed in myself.  After e-mails like these, I was not surprised to hear from Ian and Andrew that Howie, who also found time to coach both of his boys (each of whom had highly successful tennis careers, including four years of college tennis at Indiana and Yale, respectively), regularly left “short” notes of encouragement or words of wisdom in the morning or before a match.   In fact, I had a chance to go through books of these notes (that dated back 30 plus years), and it was easy to understand why Howie had such a positive impact on everything he touched.  Including his most important accomplishment — his family.   And with Ian’s permission last night, we took our first page (of what will be many) out of Howie’s book and gave Jake this note earlier today before his basketball game.  Ryan will get a similar one tomorrow.

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There is something to be said for writing it down and having something to look back at.   This note is sitting on Jake’s night stand.  And I am sitting here writing another note for tomorrow based on a few things I saw and we discussed today.

Howie Arons was a legend that touched so many lives; that legend lives on and will certainly not be forgotten.

(Most) Important Meeting

Friday, December 9, 2016.   On our way in for chemo today, I was able to attend my oldest son’s (Jake) parent/teacher conference.  I rarely miss a game for my kids (even during the last 8 months), coach baseball for the oldest boys every season (except this past one), always make it to “back to school night,” and attend almost all school events.   But for some reason I cannot recall attending a parent/teacher conference.   It is usually hard to schedule these at a convenient time (like 8:15 am today when we were lucky enough to have my mother-in-law watching the kids and could switch to an early meeting because we had chemo (a decent excuse)).  Usually I just tell Jen to schedule these conferences when it works for her around school schedules, car pools and everything else she does for the boys.   These conferences inevitably get scheduled at the worst possible time (i.e., 12:30 pm when the kids have half days of school) and getting back from the city in the middle of the day (probably during a meeting) or otherwise being on the road, makes it hard to get there.   Jen always (and immediately) gives me the detailed download because she knows how much I want to be there, but understands that she has to schedule these at a time that just won’t work for both of us.   But after sitting in the conference today, I really do not ever want to miss one of these again.

I realized today (holding back a tear at the conference table with Jen and Jake’s teacher), that this conference was more important than any game or school play.   Sure Jake and Ryan think they are going to play in the NBA; and I have no intention of telling any of my kids they should do anything other than follow their dreams.  But raising a good and well-rounded person — who is dedicated to school and gives his all in the classroom AND in everything else that is important to him (like sports), is what it is all about.  And being able to listen to the teacher talk about my son today, reviewing his work, hearing about his progress and understanding from her what a dedicated student he is, made me way more proud than any basket or goal (even though I am intense and undoubtedly loud at every game!).

Ryan’s conference is next week and my schedule that day is wide open.   And while I am heading back to work in a few weeks more excited and hungrier than ever — fully intending to be running as hard as I can as soon as I am truly able — I am definitely going to run smarter.  I am going to schedule things together with Jen and we will figure out, with both of our schedules, what makes most sense for both of us.  Yet another silver lining in a pretty wild odyssey that started just 7.5 months ago…

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Want to be inspired?

Last night, James Connor — a running back at the University of Pittsburgh — was a recipient of one of the College Football Awards handed out each year to the most outstanding college football players.  James had a great season.   He ran the ball 208 times for 1,060 yards and 16 rushing touchdowns.  He also had 20 receptions for 299 yards and 4 more touchdowns.  A remarkable season for any college running back.

Even more remarkable for a guy that had only 8 rushes for 77 yards (and 2 touchdowns) in 2015.   And heading into the 2015 season, after rushing for 1,765 yards and 26 touchdowns in his 2014 sophomore campaign, the sky was the limit.   But this is why James was awarded the Disney Spirit Award, given to the most inspirational player or team.   2015 was a “lost” season.   James was diagnosed with Hodgkin’s lymphoma around Thanksgiving of last year.   As you will read in the Washington Post article (link here  ) and hear about in the video clips from last night’s award presentation, cancer and chemotherapy did not get in his way.   By February he was back at practice (with a mask to protect his weakened immune system and unable to participate in tackling drills because of a port in his chest inserted for chemo treatments).   James was cancer free in May; the rest, well, it is inspiring to say the least.

Pitt plays Northwestern in the New Era Pinstripe Bowl on December 28th at Yankee Stadium.   Not sure it is a good idea for me to sit outside at Yankee stadium on December 28th (just one week after the eight month protocol is officially done), but I am definitely thinking about it.   Not a Pitt or Northwestern fan (Pitt crushed Syracuse this year).  Like Holly Rowe, however, I am a James Connor fan.  And now that this is finished, I am heading down to the basement to walk on the treadmill.  [Fourth day in a row of chemo tomorrow and then a break until next Wednesday.   Four game series next week (Weds through Sat) followed by one last day of treatment on Wednesday 12/21.  We will deal with the maintenance program in 2017, 2018 and 2019 — just part of the drill.]

 

 

 

 

Home Stretch

Wednesday, December 7, 2016.   Man does it feel good to write this.   [It will feel even better on December 21 (and then again three years from now when the maintenance program is done).]   But first things first.

I always enjoy watching the Kentucky Derby and hearing the announcer say “[a]nd down the stretch they come.”   I don’t particularly like horses or horse races.   But the home stretch of the race always excites me.   And being able to get to “our” home stretch today is a sweet feeling.   We know this is far from over and it is certainly not lost on us that we are lucky and incredibly fortunate to be where we are today with an unbelievable network of support throughout.  We have, however, been confident from the get-go (and at the same time scared).

After two weeks of rest since the last treatment session, today marked the beginning of the protocol’s final two-week stretch.   We have eight more days of chemo, but the worst day (today) is behind us.   It included 5 different chemo treatments including another spinal tap procedure.   Only one chemo treatment each day the rest of the day  (through December 21).

Today was also monumental for me in that it marked the last spinal tap of 2016.  No matter how many there have been (12), I just cannot get comfortable with the thought of something going into the spine.   I start getting agida about 36 hours before.   Today I was shaking and they had to wait a few minutes before getting started (definitely had to do with the anticipation of being done done).  But I have the best care and they know at this point what a nudnik I am.   Jen being the foremost expert on both my attitude and how to handle it.  [While we have 12 more over the maintenance period, we will deal with them as they come…]

These next two weeks won’t be fun, but the last two weeks have been great.   While I have not necessarily felt great at all times, Jen is an expert at this point and we have been able to really enjoy our time together (as we have throughout).   A lot of this has to do with the reality that getting back to normal is in sight.   I finally feel comfortable getting back involved in minor things, knowing for the first time I will avoid false starts.   It will be a good thing for all of us.   My wife is as supportive as they come and knows how excited I am to get back to work.   That makes her excited.  [I also know she is excited to get her life back too as this has been the hardest for her.]  Health is the priority and I am not going to do something to jeopardize that (like running at my normal 110 mph out of the gates), but getting back to work as soon as possible is a priority for us too.  The lack of sleep over the last couple of weeks is partly due to medication, but mostly due to the excitement of being able to get back to everything we do.   Of course it will be with a whole new — and better — perspective on life and stress, together with an ability (hopefully) to avoid sweating some of the smaller stuff on a daily basis.   The silver lining in these last eight months has always been the time with Jen and the boys.  Lunch with Jen daily and a random Monday trip to the mall mid am are hard to top.   Hugs in the morning from the boys, dinner together every night and watching the Cavs (including tonight against the Knicks), does not get old.   I enjoy the moments more and will continue to for many years to come.

Thanks to everyone for the support that we have been blessed to have in so many different forms throughout these 8 months.  It started in late April and never stopped.  It means so much to us and makes all the difference in the world as we grinded — and continue to grind — this out.  It is something we are working to capture through a charitable organization that we intend to announce soon, which will be able to directly support some of the 2,000 families that are challenged with acute t-cell lymphoblastic lymphoma each year.    More to come.