Chapter 1 — The Beginning

June 1, 2016.  On the day that I was back in the hospital for the beginning of the next phase of chemo (Wednesday through Saturday this week and the same next week), I thought it made sense to go back to the beginning.  The moments after we got in our car on April 26, 2016 following my diagnosis (right after being misdiagnosed), and our very first day at New York-Presbyterian, the University Hospital of Columbia and Cornell, starting about 20 hours later on April 27, 2016.   [I empathize with Mark Herlizch when he describes the four months of doctors’ appointments (and missed diagnoses) before someone finally decided to take the MRI of his legs.  Mark (and his mother) knew something was wrong.  And with continued pain and no answers, you keep knocking on doors until you get an answer. You deal with the consequences once you get the answer.]  Now that we knew I had T-Cell Lymphoblastic Lymphoma, it was time to get to work.

The car ride on April 26th from the White Plains assigned oncologist’s personal office in the Bronx back to our house in Scarsdale was eerily quiet. I was on pain meds from the biopsy the day before.  But I had just been told I had cancer and the doctor’s “quick research” suggested there was a 50% survival rate.  During that car ride, I immediately began thinking about the sample set used to get to 50%. And I kept telling myself you can’t just give someone a percentage like that in a vacuum.  Lawyers also hate when clients ask for percentage likelihood of success.  I googled a few things in the car, which obviously makes you crazy.  I also knew that Uncle Mike and Lenny were fast at work doing whatever they could to immediately get me to the best doctor for my condition.  Everyone knew this needed to be treated ASAP.  [Uncle Mike is Michael S. Nussbaum, M.D., F.A.C.S.  He specializes in surgery at UFHealth, University of Florida Health in Jacksonville, Florida, serving as the Program Director, Surgery Residency; Program Director, Minimally Invasive Surgery Fellowship.  Uncle Mike is my mom’s little brother and we have been close since I was born.  He called my mom when all of this was happening and told her this was his world and he was going to make sure I got to the best doctor.  Lenny is Leonard B. Nelson, M.D., F.A.C.S. He is a pediatric ophthalmologist at Wills Eye Hospital in Philadelphia where he serves as Co-Director of Pediatric Ophthalmology and Strabismus Service. In addition to being my father-in-law, he also happens to be a true friend and one of the smartest people I know.]

When we pulled into the driveway, I got out of the car a bit groggy. I walked down to the front of our circular drive (that is where I get best cell service) to make a few phone calls. At this point, our family and closest friends knew something was wrong. But no one knew I had T-Cell Lymphoblastic Lymphoma. No one knew it would require immediate treatment.  Word was starting to get out that something was wrong.  I started getting some incoming calls and texts from friends of my parents. And as I made a couple of phone calls to my closest friends/partners, the reality of the situation was taking hold. I knew something was very wrong on Sunday (and weeks before if I really think about it). But actually hearing that you have cancer and need immediate (and intense) treatment takes it to a new level. And I just couldn’t get that 50% survival comment out of my brain. Did he say 50-90%?  Because that is what some of the articles on google said.  I just could not remember. Some articles did not even reference 50%, but instead said 80-90% get to remission (although a high percentage deal with the disease yet again after remission). Whatever.

I spoke to a handful of people. I remember speaking to Basta. When I told him the Dr. said there was a 50% chance of survival, there was a long pause. After the long pause (I probably said something along the lines of “I win jump balls,”), he wanted to know if I had called Nicole. I had not. I knew Nicole and Russ were in Disney and I really did not want to ruin their trip. I had thought (based on misinformation from Chris), that Nicole was coming back Wednesday or Thursday.  But it turns out she had not left until Monday.  I knew I needed to get in touch with her and wanted to make sure she heard about this from me. On the work front, I had only spoken to Paul, Chris and Edward (all of whom were and have been phenomenal friends, providing support, advice and guidance, along with all of my other partners who I realize are truly friends not partners).  [I still laugh when I think about Edward asking me if they were sure it was a mass and not just some mucus that needed to be flushed out of my system!].  I asked Paul, Chris and Edward if any of them had discussed with Nicole.  They all said no.  I tried her cell but didn’t get her.  So I sent her a text (“Hey. Hope Disney is awesome. Been trying not to bother you with something but got to let you know. Give me a call whenever you can. No rush. And seriously sorry to interrupt.”). I should have called Nicole on Sunday. I’m sorry I didn’t. I am sorry for a lot of things. We didn’t talk for a few months over something stupid (and since I hate conflict, I avoided discussing anything with her). That will never happen again. And to top it off I ruined her Disney trip.  [Nicole, I owe you one (in fact I owe you more than one!).]  I also spoke to some of my closest friends from Beachwood, college and Scarsdale and explained the evolving situation that now officially had a label.  With each phone call the reality was setting in more and more.

While I was making phone calls, Uncle Mike and Lenny worked the phones and their connections.  Lenny had gotten us to a great doctor at Sloan Kettering, but she was not going to be available to see me until Thursday.  Uncle Mike spoke to a close friend of his from over the years who was able to get us in immediate touch with Dr. Gail J. Roboz, M.D., the director of the Leukemia Program at Weill Medical College of Cornell University.  We were advised that she was the expert on my condition.  Uncle Mike and Lenny coordinated and agreed Dr. Roboz was the right choice and that getting in quickly was critical.  Minutes later Uncle Mike called and advised me that Dr. Roboz’s office would be calling momentarily to squeeze me into an appointment for the next morning at 11 am. The last thing I remember was Uncle Mike telling me that I should pack an overnight bag.  Within 2 hours of being diagnosed, I had an appointment with the best doctor.  Lucky and fortunate are understatements (to say the least).  There are people that go months without getting medical care.  Let alone the right medical care.

That night was kind of a blur. This is when food started coming to the house from our closest friends in Scarsdale. Mark Herzlich says he felt a real sense of community when people filled up coolers of food that they would leave behind their house after his mother agreed to let people help. Our friends did not even give us a chance to say no.  I felt blessed that we had such amazing friends (and over the next several weeks a network of support from across the country that was and is truly uplifting).  Our closest friends from Scarsdale made sure we had meals every night that first week. I don’t remember eating much Tuesday night, but there was plenty of food. [And then came packages of food from friends and relatives outside of Scarsdale, the “meal train” that our friends in the Scarsdale community put together to make sure we had dinner during the week throughout May and June and Scarsdale Little League sending us Saturday night dinners, and so many people jumped in to help and support and us.  A thank you just does not suffice. Overwhelming, humbling, and appreciative are words that come to mind. As well as lucky and fortunate. My family thanks everyone from the bottom of our hearts.]

I hung with my mom, Jen, Drew, Brad, Julie and Basta that night. Although I didn’t want it, Basta made me drink some Pappy Van Winkle. I think he knew I was going to be on the shelf for a while. And I will never forget the conversation I had with Paul as he was leaving my house. [Or the response from Paul and all of my partners from work; humbling.]

That Tuesday night before we went to the hospital was one of the worst night’s sleep I have ever had (and that is after several months of tossing and turning notwithstanding the use of every over the counter sleep aid known to man kind). Come to think of it, I don’t think I slept much more than hour or two. I had known there was a giant tumor in the middle of my chest for more than 60 hours.  So maybe it was the unknown that was about to begin at 11 am on Wednesday at NY Presbyterian.  Or the fact that the biopsy was causing me such pain that oxycodone did not really work. Whatever it was, I could not get comfortable. And because I was not comfortable, Jen was not comfortable. So when I moved from the bed, to the study and then back to the bed, Jen moved with me too.  Each time.  With every cough, she stayed awake to make sure I was OK.  With every toss and turn, she was watching intently hoping I could get comfortable and sleep.  All while I knew she was as freaked out about all of this as I was.  I don’t remember asking if she was OK.  I don’t remember telling her that everything was going to be OK.  Giving her the reassurance she needed.  Truth is, that Tuesday night I had no clue what was coming.  I just knew that we were going to see Dr. Roboz at 11 am and she was the expert.  We had lots and lots of friends give us suggestions, all of which we appreciated immensely.  But when Uncle Mike and Lenny agreed that Dr. Roboz was the right choice, there was no hesitation on my part or Jen’s. That was it.  And as I lay there Tuesday night thinking about all sorts of things that you should not be thinking about, Wednesday morning at 11 am could not come fast enough.  Jen always tells me to never wish time away, but I felt like such crap that I needed that night to end.

Wednesday morning I was out of bed early. I was still working at this point. Even sent out some emails and reviewed a few documents around 5 am because I could not sleep.  I was around with the kids. [At this point I had no idea that I was going to be in the hospital for an extended period of time or told that I could not work at all for potentially six months.] To make things even harder, this was “spring break” for the kids.  So the kids were around all of these days, including when we were at White Plains Hospital (Sunday, Monday and Tuesday), and heading to the City on Wednesday for our first appointment.  Jen, of course, made sure things were as normal as possible and all of our friends were amazing helping with the kids.  I think Jake slept over at one of his best buddy’s Miles’ house four times that week. Ryan lived with the Tauber’s, Sheppe’s, and Grossberg’s and Brandon was with the Rumbold’s’everyday.  And Atara spoke at length with Jen about how we could handle all of this with the kids, the school and all of the parents (with a detailed email going out to everyone explaining how people should be careful about what they say as we did not want the word “cancer” being thrown around). Jen did – and was focused on — everything.

I ran to the ACME that morning to pick up a few things for Jen.  My list, which was texted to me, included “chocolate chip muffins, strawberries, raspberries, Bologna, coffeemate and 2 sesame bagels. Land o lakes spreadable butter with red top.”  I am notorious for going to the store and getting the wrong stuff.  I had to ask what kind of bologna she wanted. The response: “Hebrew National. It is with the kosher stuff. Like across from the butcher area.” I needed that direction – never would have found it otherwise. I got what I needed sans the bagels. I had a better idea. I took a right out the ACME and headed to the bagel store in the shopping center. I got the two sesame bagels, a chocolate chip muffin for Jen and for me, an everything bagel with bacon, egg and cheese. I think I even asked them to spread butter on it. Rarely would I eat something like this. But right then felt as good a time as any.  I vividly remember getting home and sitting down at the counter to eat my bagel sandwich.  Jake was still around and I asked if he wanted a bite. He had already had breakfast, so he said no. But then he saw (and probably smelled) the sandwich and wanted to try it (I knew he was going to want a bite). He took a bite and said it was amazing.  He needed a second bite. He also commented that this was something I never get. I just laughed. That would be the last time I would eat with Jake for 16 days.

At this point I shaved and showered. I had already decided I needed to look presentable for my first appointment with Dr. Roboz. First impressions are everything.  Plus, I had not gotten dressed in 3 days. I wore jeans, my favorite white rag and bone shirt and the Air Jordan’s that Jen and the boys got me for my birthday last year (because I never had a cool pair of sneakers in my life).  I drove into the city that morning, with Jen riding shot gun and my mom in the back seat.  It was a pretty quiet car ride.  As we were leaving Helene was on her way back to Scarsdale (after a day in Philly to literally get a change of clothes) so she could be stationed at home with the kids. [Man are we lucky to have 2 sets of parents who literally drop everything for us whenever we need them.]

When we got to the hospital we were greeted by my father (who had flown in on the 6 am) and my brother in the lobby of hospital. It was the fourth day in a row I saw my brother. What an amazing kid. A guy who would jump in front of a bus for me. Drew have I ever told you how proud I am of you and the man you have become?

The five of us made our way to the third floor. The elevator opens to the front desk and then the sign hits you right between the eyes: Ronald P. Stanton Clinical Cancer Program. Awesome. Here we go. I checked in with Jen, gave them my insurance card and my parents and Drew looked for seats. I was as friendly as can be to the person at desk, but I was quickly scanning the room. It was filled with people occupying the orangish/brown cushioned chairs. There were 2 computer terminals on either side and a Keurig coffee machine off to the left. All of the people filling the organish/brown chairs seemed old. Some were bald. Some had on hats. Others were wearing masks.  And I felt like everyone was staring at me. I hate that room. [We don’t sit in there anymore. In fact, that same day, we figured out that there are smaller side rooms where you can wait. They have the same orangish/brown cushioned chairs, but there are not nearly as many people waiting to be called to see a doctor or get treatment. As I later learned, this is the “out-patient center.” The chemo infusion rooms are on one side (I was in Infusion Room #1 today). Examination rooms on the other side.]

We waited for our name to be called. I tried to make a cup of coffee but the Keurig machine did not cooperate. A nice guy told me it rarely worked and we shot the shit for a minute. Nervous chatter I guess. I then got back to my phone; I was still on top of, and responding to, emails. I had a new case filing that weekend and I was still hopeful I was going to be able to be at the first day hearing that next Monday in Houston. I had no clue what was in store.  After what seemed like forever, they called “Sussberg.” All 5 of us went back to the examination room.  No blood was taken, since the assigned oncologist from White Plains had taken enough blood to complete a transfusion the day before. But they took my vitals and I was weighed in. I was 192 pounds, but I had all my clothes on. Plus I figured that bagel earlier in the day contributed a few extra pounds. But 190 is generally my fighting weight. I went back into the room and we waited for the doctor.

The first person to enter the room was Maureen. She is Dr. Roboz’s PA. Not sure there was any medical substance to the conversation, but we hit it off right away. She went to Cornell and graduated the same year as Jen. And her boyfriend was born on January 17, 1978 – one day before me. She lived in NJ, near Rutgers, and commuted 2.5 hours to the hospital, each way!  I remember saying that was crazy and that I am sure it was hard to find time to spend with her boyfriend. [We unfortunately learned today that Maureen is leaving to be at a hospital closer to home. Totally get it, but selfishly wish she was waiting until this is all over because she really is a fantastic person and an even better doctor.  But we will stay in touch.] She also told us about her boyfriend’s sister living close by, and the sister’s three kids, who Maureen loves to spend time with on the weekends. We talked about our kids and the never ending sports schedule on the weekends that we have come to love. We were comfortable. I could tell a sense calm had come over Jen. I almost forgot for a second why we there.

And then Dr. Roboz came into the room. Will never forget what she said. She asked who the victim was. I said it was me and think I sort of raised my hand. Her response: “[w]ell this sucks. But this is all I do.” She went on to say she was going to take care of this and get me better. There was never a discussion of percentages. It was 100%. She said I was going to be in the hospital for 3-4 weeks, with chemo treatments to follow for approximately 6 months and then another 1.5 years of a very strict pill regime. But we were going to get rid of the cancer and get me back to doing what I do. At that point, she told me she had spoken at length to both Uncle Mike and Lenny and understood that I was a partner in a big law firm that restructured companies and worked lots of hours. And that I was always on the phone.  I told her I was hopeful to be in Houston on Monday for a new case.  She said I was done with work for 6 months.  Cold turkey.  I kind of brushed it off because I thought I was going to figure something out.

One of the first things Dr. Roboz talked about was “banking” some of my sperm.  Jen immediately asked her if they could give me a vasectomy. She was not kidding. As much as I have toyed with the idea of having another child, Jen has never wavered. Our three healthy boys (thank god) are enough for her. She is not having another child. Dr. Roboz pushed, said “she didn’t want any chemo babies,” but there was no waiver in Jen. And frankly whatever Jen wants is fine with me.  That was the end of the discussion.

Dr. Roboz went on to talk about the treatment program. Some information I retained. Other information was going in one ear and out the other. Not because I was unfocused or distracted.  It was just a lot of information to process all at once.  Jen asked some questions. My parents and brother just listened. I do remember Dr. Roboz, and at this point both Maureen and Dr. Samuels (another great great doctor) were also in the room, saying that she was an expert here and while I could ask lots of questions she knew what she was doing.  And she would tell me the things I needed to be told. I was sold. I was so comfortable. And I was ready. I wasn’t even phased by the 3-4 weeks in the hospital (although Jen and I had not yet discussed how she wanted to handle with the kids). I think I knew it was going to be shorter. Just like I know it is not going to take 6 months before I am back at work. I like beating targets.  And I wanted to start right then and there. Partially because I was comfortable, but mostly because the sooner we started the sooner this would be behind us.

The next conversation was around timing. Dr. Roboz said she probably could get me started Thursday or Monday because she needed to “match me up with someone.” I was not sure what she meant, so I asked.  She was talking about a roommate. Someone I would share a room and a bathroom with on the 10th floor — which is the dedicated oncology floor.  Other than Jen, I had not had a roommate since my freshmen year of college (RT Corkery – a great guy.). [Was reminded I had a “suite” in Watson my sophomore year; Stu and RT on the right; common room in the middle; Slavin and Sussberg on the left.  That was a great year.  So much fun I forgot I shared room.]  And I was not having a roommate this time around. I also wanted to get started immediately because that meant I could get home sooner. But there were no available private rooms on the 10th floor. Dr. Roboz stepped out at this point to check on something.  She came back a few minutes later and said there was a room available on the 14th floor, which is the concierge floor. Since my blood counts were good, she was comfortable letting me stay on that floor even though it was not her team that would be attending to me.  She did, however, want to make sure we understood the ridiculous price we would need to pay for that room.  Jen, in her typical fashion, said she assumed that insurance would cover most of the cost for a room on the 14th floor.  I knew that was not the case. Dr. Roboz confirmed it.  She then said she would leave us for a few minutes to discuss.  Jen and I make a great team. She has made me conscious about frivolous spending, and I think I have taught her to treat herself to certain things that normally she would not buy. But it was Jen that said I was getting the private room and that the cost did not matter. I had worked too hard for too long to not be comfortable when going through something like this. As silly as it sounds, that was a special moment for me. And it was clear to me that I was with a woman who knew exactly who I was and what I needed (and she continues to amaze me each and every day with the way she is taking care of me). So we gave them our Amex card, made arrangements for the private room and were told to grab something to eat before Maureen performed a bone marrow test and I was admitted to the hospital to begin treatment that very night.

We went down to the lobby and went to Au Bon Pain. Nothing really appealed to me. I ate some type of muesli mix. Drew volunteered to go get us EJ’s, which sounded delicious. I had a turkey burger (with the bun) and fries as we waited in the side room (which we had stumbled upon and I liked much better than the main room) to be called for the bone marrow test. As far as food was concerned, Dr. Roboz told me to eat basically anything but sushi, hot dogs off the street, processed meats and food prepared in dirty kitchens. [I would later be told only to eat hospital food, but that changed about 5 days in.]

As I was finishing EJ’s, Maureen called me in and escorted me to Examination Room #13. I was nervous. The assigned oncologist at White Plains, who really wanted to perform the bone marrow test on me, told me this was going to hurt “bad.” Oh, and I am superstitious. I felt comfortable enough to tell that to Maureen. And she totally understood.  In response, she told me to hold tight; within moments she was back and we moved to Examination Room #10. I liked the #10. I wore that number for 8th grade football. When we got to the examination room, I lied flat on my stomach and pulled up my shirt slightly. I did not even need to change. I was given a local anesthesia and Maureen went to work. She kept asking if I felt anything in my back. But other than hearing a weird scrapping noise, I didn’t feel a thing after the anesthesia kicked in. Within a minute or two, however, I had excruciating pain in my chest, neck and ears. I was laying flat on the 4 ½ inch grapefruit of a tumor that was smack in the middle of my chest and had been biopsied just two days prior. The pain I was feeling was the same pain that I felt from time to time over the last couple of months. I am sure it was nothing compared to the pain that Mark Herzlich felt in his left leg, but I was biting my lip and clenching my fists. It was so uncomfortable and it felt like the procedure would never end. When it did (it probably lasted all of 10 minutes), I got up too quickly but I just could not lay down. I even tried to lay on my back. But the pain was excruciating. At that point I distinctly remember a ringing in my left ear. And then my right. Maureen walked with me outside the room to get me some water. She then escorted me back to the side waiting room where Jen, my parents and Drew were hanging out. Other people were there too. Maureen helped sit me down in the chair next to Jen, I think someone suggested I drink some Gatorade because I was green and that was it.  I passed out. I am told my eyes rolled into the back of my head, I rocked a little bit back and forth with my hands firmly placed on the side of my head and made some weird oohing sounds. I kind of remember running through a grassy field. It felt like an eternity. When I woke up I saw that Jen was hysterical (and had to be removed because she almost passed out herself), my mother was staring at me bug eyed, and my brother and father were looking at me confused (which they often do, so that was not so strange). And my response? “F*ck, I pissed my pants.” I was legitimately mad for about 2 seconds because it was my only pair of jeans. [Not sure why I cared since I have not put on another pair of jeans since April 27th.] But before I could blink, the pain was back and it was even worse than during the bone marrow test.

I was quickly put in a wheel chair and taken by someone, together with my father and mother, to the 14th floor. Jen and Drew went to check me in. There were all sorts of elevator issues and it took us a long time to get there. And when we got there, there was a lot of commotion because I had not officially been checked in, yet I really needed something for the pain. While it seemed like forever, I was soon in bed. An IV was inserted (which is something I cannot stand, even earlier today, but I was in such pain I don’t really remember it). Then they started the morphine and the steroids. I would be hooked up to the IV pole for fluids for the next week.

It took several hours and an increase in the morphine for the pain to subside. But it ultimately did. That night is a blur. I did not have a sense of time. But I do know that Jen stayed with me that night (evidence in the picture I took below). I was exhausted but I did not sleep much. Yet there was a sense of calmness and positivity running through my blood — even though my blood was mixed with cancer. I was in the right place. The support from friends and family was invigorating and I was ready for what was ahead. This was about the time that my entire perspective on life starting changing. And it was only the beginning……