Friday, December 23, 2016. Full after eating Jackson Hole, I was rolled to the North corner of the 10th floor (Room 214) late in the evening on Sunday, May 1, 2016. [I would ultimately stay here for 12 days.] As I was wheeled to my room, with a few good friends in tow carrying my current belongings, we got to see most of the 10th floor “oncology wing.” A few patients were out and about, but it was generally quiet. There was no doubt this was totally different from the 14th floor (which, again, was not “real.”). This was real. Everyone here had cancer. [And that became more and more apparent as the days went by.] There was coughing and wheezing as I was rolled past the rooms, and I saw nurses’ aides walking in an out with medications and blood pressure checks. I thought and said out loud that “sh&t just got real.”
At that point we made it to my room tucked away in the corner right next to a patient/guest lounge area with couches and a television. The room was huge. Couches and tables, lots of chairs, good nightstand, large closet, decent bathroom and a little “work station” where I could set up my laptop. After my friends took off, I started getting myself organized (something I do wherever I go, whether it be a hotel, my home or the office). The next morning Jen and my Mom started stocking me with new sweat pants (I had only had a pair or two before all of this) and some t-shirts to wear around the room (everyone was sick of my Lehigh and Cornell t-shirts, which I have been wearing every weekend for 15 years (and still do)). We had friends send and bring me blankets and slippers [I am wearing the same slippers as I type this.] If I was going to be here for 3ish weeks, I was going to try to get comfortable and make the most of it. And that is exactly what I did.
I made myself at home. Jen ordered me lots of drinks to stay hydrated (some good, some bad). I kept food in the fridge. I ate meals at the kitchen table. I had a recliner chair with an effective desk where I would sit for hours in the middle of the night reading and responding to emails. The hospital brought me an exercise bike because I was tired of doing laps in the hall after a few days (there were signs everywhere that said “Walk to Health,” so I walked in the morning, mid-day and at night as I felt good most of the time). People on the floor knew it was time for my walk and I made sure to say hello to people as I walked by. [One guy that was changing bed sheets (I had said hello to before) stopped me in the middle of my walk on the second or third night, and said he wanted to ask me an inappropriate question. I said no problem (although I wasn’t sure what was coming). He asked me what I was doing at the hospital. He said I didn’t look sick at all. At that point I told him I didn’t feel sick either, but I explained the situation. We spoke a bunch over the next couple of weeks, including about some ideas he had to start a business (I listened more than talked).]
I met a bunch of other patients on the morning and afternoon walks too (each person had some type of leukemia or lymphoma and everyone was in the hospital either at the beginning of their treatments or because they needed a serious procedure; and not everyone was in good spirits). [I actually ran into two people on Wednesday in the infusion center that I had met and become friendly with in early May. One was doing OK (he had a stem cell transplant but no chemo), but he is still unable to work because of low white blood counts. The other guy was not doing great and was starting on a new trial to see if something different would work. Good reminder that each person’s cancer is different.]
Other than a few hiccups over the course of 12 days (described below), my nearly two weeks on the 10th floor will be remembered for the steady stream of visitors and outpouring of support from so many people in different places. All of which made me think much less about being in the hospital and the suggested six months of treatments ahead. It was all still raw and not totally real, but I certainly felt like my life had flashed in front of my eyes just a week before. [Strange to be writing this now, eight months later, with my head intact and in a position to be back on my feet in 2017 and beyond.] And, of course, I missed my kids (and Jen) and not living at home. We did a bunch of “strategic” face times, always when I was feeling great. But never a replacement for being home.
Truth be told, by the end of my stay on the 10th floor (which was extended because I ran a fever), I was so comfortable that I told Jen and my Dr.’s team that I was worried/nervous about going home too early (it was my first time being neutropenic and I had to get injections before I left). Which frankly scared me a little as I was incredibly conflicted. The doctors pushed me, however, and we went home on Friday, May 13, 2016 — just 16 days after being admitted to the hospital. When we left, I felt good and had all sorts of plans (together with a bunch of promises, many of which were broken) to enjoy the summer. [We obviously did not appreciate that the “protocol” would run through December 21. And I was feeling good with minimal side effects, so dI did not embrace that it would get worse than the “induction” phase. Not a big deal at the end of the day and I would take the same results 10/10 times, I’m just calling balls and strikes…]
What follows are some of the highlights of my 12 days on the 10th floor at NY Presbyterian in May 2016. The visits, emails, texts and phone calls from family, friends, partners and colleagues will define those 16 days in the hospital (and these eight months more generally) much more than the mouth sores, horrible constipation from mediation (that required attention from the doctors and then the nurses!) or my first spinal tap. And while I can’t sit here and thank each and everyone person that got in touch or came to visit, I feel like I remember and do not plan to forget, each call, e-mail, text and visit. We are incredibly appreciative for the outreach and support because that was what this all
was — not the cancer.
- The 14th floor had a special kitchen and allegedly great food. The 10th floor, however, was way better. Beginning on morning of May 2 (omelette, hash brown and turkey sausage links), I enjoyed 2-3 meals each day during my stay. And this was notwithstanding a constant flow of food from guests (or Jen and my parents/in-laws). My favorite: the turkey burger. I love turkey burgers but this one, kind of narly looking, was delicious. If I didn’t see it on the menu, I would ask the person coming by if they didn’t mind bringing one on the side (at both lunch and dinner). [A few weeks later, as a result of the cumulative chemotherapy, I lost my taste for turkey burgers — and a lot of other foods. But this happened after May 13, so I got to enjoy a turkey burger close to every day. Here I am enjoying one with Scott (who liked it too) in my Lehigh t-shirt.]
- The nurses and nurses’ aides on the 10th floor were great people and they took good care of me. As was the entire staff on the floor, including the people who sanitized the rooms on a daily basis and were very friendly. [The same can be said for everyone on the 3rd floor infusion center, where I spent most of the past eight months. No patient wants to be on the 10th floor (or the 3rd floor) and there is no patient that actually chooses to be on these floors. But my philosophy was always to make the most of it and not change who I was. So I was positive and said hello to everyone.] My first two aides were men and they both looked like body builders. Which pissed me off because I had not been to the gym in two weeks. But they were both nice guys and I saw them off and on over the course of the next 12 days. There was another aide who used to hang around a lot (we will call him “K”). A young guy who was hysterical and had lots of stories. He met lots of people who came to visit and if he had the time, he would come by to say hello. In addition to being a nurse’s aide, he was a “back-up” dancer hoping to get into music videos. I pushed him to have a dance-off against my buddy Evan. Ian taped it (and posted it on You Tube); me, my Dad and Naomi watched. We moved the furniture to create a dance floor. Who said the “induction” phase can’t be fun?
- My brother brought me Dunkin Donuts coffee every single morning on his way to work. [My kid brother is one of a kind and throughout these eight months, he was always willing to do whatever he could to help out, including rides home from the hospital to Scarsdale (and then back to the City) so Jen could get home for the boys if treatments or infusions went long. He drove me home after my last treatment on Wednesday.] Drew also made tough phone calls to friends, including some I had not spoken to in years, to make sure they knew what was going on. I have not been drinking coffee over the last several months (no taste for it), but in May I enjoyed every cup he brought. And once in a while he would grab one of those breakfast sandwiches (an extra special treat). [Drew, Alexis, Mia and Violet — don’t let us down. We will see you in Scarsdale in 2019.]
[This was the summer of 1997; I was 19 heading into my sophomore year at Syracuse. Drew was 16 and heading into his junior year of high school. [Drew is taller than me now (and in better shape — but as I told him the other day, that is only temporary).]
- I was not sleeping well (or much) at night because of the steroids. I would respond to emails and texts for hours and watch SportsCenter before trying to fall asleep. Sometimes I would sleep for a few hours, other than times I would just lie there and ultimately grab my phone. But I was never tired (steroids). I would shower and get dressed (in sweats and a t-shirt) first thing in the morning. Jen would usually be there in the morning after dropping the kids off at school (or my Mom and Dad after they stayed in NY for what seemed like a month). Drew would be there in the am and Jeff F. came for several breakfast meetings. Most visitors would start coming late morning and throughout the day/night. It was awesome. In addition to the emails and texts from so many people, friends, family, partners, associates and colleagues from Scarsdale, Syracuse, Cardozo, Cleveland, Florida, Philly, Boston, New Jersey, Kirkland & Ellis LLP, the restructuring community (including people from LA, Houston, Chicago etc.), camp, and Jen’s friends (who are my friends) from Cornell, all came by to say hello (usually with food or books and magazines). Even Rabbi Dan (my Rabbi from growing up in Florida), who married us in Philadelphia in 2004, happened to be in New York the first weekend of May, came by the hospital and said a prayer with me and my parents. As I have said many times before, I am forever humbled and grateful for the support. And we cannot say it enough or ever be able to really explain in words what it meant to us (Jen was home alone and her friends were there nightly making sure there was food (for months) and people around to support her (as she had it the hardest from day 1). We are so fortunate to have had a support system throughout these eight months. It is only appropriate for us to pay it forward (and we intend to do so in many different ways). [Makes me think about the guy I met on December 15 who had his own business (that is failing) and lost his insurance; then I think about my firm and partners (who are friends) who stepped in, handled all of my matters and told me and my family to focus 100% on getting healthy. That is what we did and we are blessed to have been in a position to have done so.]
- There were definitely some tough moments/days on the 10th floor. But the good outweighed the bad. [Some friends have reached out and said I did not complain the entire time. That is not true. I definitely complained. I am going to complain below. And I have complained about certain things throughout these eight months (to Jen on a daily basis). But I have kept my complaints and issues in perspective, always realizing that someone else is dealing with something worse. (For example, and for those who know me well, you would not be surprised that when I am neutropenic I take my temperature often. If you have a fever of 101.4 for an hour, you need to go to the hospital. I just took my temperature because I have a headache and freaked out because it was 99.7. I debated not bothering Jen (who is at lunch), but I texted her anyway. Watching for a response (I like to respond quickly and impose that on others), I went upstairs and took my temperature again about 15 minutes later; it was 98.8. My home office is the warmest room in the house (we went through this exercise last night when we took my temp and it was 100 before moving rooms!) and it just dawned on me that the terrible headache is from wearing new glasses the last two days during my house arrest. I just put in my contacts (and might take some Tylenol since I know there is no fever), but of course Jen is on her way home. Sorry. I may have new perspective, but I am definitely not smarter.) And with that, let the moaning begin…..]
- On Monday, May 2, I had about a 1.5 hour procedure to insert a PICC line. This would have alleviated the need to get an IV every time I had treatment (and would remained in place for eight months). Once the PICC line is in, you can not lift anything over eight pounds and need to make sure it is cleaned properly and covered for showers. Pain in the rear-end. I dislike (very much) procedures and I can’t stand the IV getting inserted. Especially when they miss. [This just reminded me of the time on the 14th floor the week before (prior to knowing there were IV specialists (who I subsequently asked for every time — and now I ask for my beloved Judy, who has stepped in over the last six weeks or so because I have no veins left after having IV’s inserted for eight months)), that a very nice nurse from Boston (a big Pats fan who loved the movie The Town, one of my favorites) put in the IV. I asked her if it was normal to lose feeling in my middle finger. She literally hit a nerve. That IV came out almost as fast as it went in; the feeling in my middle finger did not come back for a day or two.] I knew Jen had been outside waiting with a few of our friends from Scarsdale (the procedure started just before noon). After they finished, I was in a little pain but got up to let everyone come in as they were gathering their tools from the procedure. In trots my friend and colleague Steve R. and his good friend Michael Strahan (see one of the first pictures on this site). Jen and some of the Scarsdale girls were right behind. Apparently Michael got there with Steve just as the procedure was starting and waited the entire time. It was great to meet him and I told him I had a lot of respect for his post-football career (and very much appreciate Steve making this happen). Lots of nurses (and doctors) were equally happy that Michael Strahan hung out on the 10th floor for a while. And it certainly distracted me from the pain I was feeling from the procedure and PICC line generally. To make a long story short, the PICC line was removed less than 24 hours later. I had developed a small clot on the line, which explained why I was in pain (the medication did not even help) and my doctor decided I could move forward without the line. I remember thinking that this was a great development (including because I could lift weights (I can count on my hand how many times that has happened). Would not go back and change anything; just saying what happened.
- I started getting mouth sores around Tuesday, May 3rd, and they got worse before they got better. There was a day I could only eat Jolly Ranchers as the sores made their way into my throat. But it got better quickly with all sorts of medication. And while I definitely talked a little funny with anyone who was there, I remember saying if this was the worst of it, no problem.
- On Thursday, May 5th, I had another chemo session (vincristine) and my first spinal tap. I did not know what was involved in the spinal tap, other than they inject chemo (methotrexate) into the spine so that it gets to the brain. I was told the brain is a place where micro cancer cells of this type hide and the spinal taps are an important part of the treatment to help ensure this never comes back. [We were lucky to learn early on that there was no exposure to my bone marrow (following the test on April 27) nor my brain. While the treatment regime was the same no matter what, this was a pretty important development.] The agida for the spinal tap started on Tuesday. To this day, even after 12 of these (with 12 more to come in the next three years), I still start getting antsy about two days before. But the first one was a big one. And it ended up going OK. I wanted Jen to be there for this and of course she was. You sit in an awkward, uncomfortable position and the procedure feels like it takes 2 hours (it can last anywhere from 10-30 minutes). After it was over, you must lie down for at least an hour and drink caffeine to avoid a nasty headache. We did exactly what we were told (laid flat for more than an hour, drank coffee etc.). I took it easy that night. By Friday, I was fine. Up and about, walking the halls. Hanging out with friends. All good. On Saturday morning (May 7), Brad came by for an early breakfast. He brought me pancakes. I knew he was coming and every day prior I was up really early (after not sleeping), and ready for anyone that came. But Saturday morning I had a terrible headache. I was very worried that I was getting sick. Plus the team had suggested that there was a possibility of me leaving the hospital on Sunday (which was Mother’s Day, and I was pumped about that). [Also loved that it would have been less than two weeks.] When I stood up and I walked over to Brad, I had an awful sensation come over me and the next thing I knew I was in the bathroom throwing-up. I had a spinal tap headache. At least that is what they thought when I called them. I remember being cold (and having a blanket wrapped around me). I fought through and still got to hang with Brad (and got some medication to help alleviate the headache). But that turned out to be a not such a great day . . .
- My blood test later in the day on Saturday (they check your counts every day in the hospital), revealed I was neutropenic. [Same as I am right now.] Fancy way of saying you have very few white blood cells (if any) to fight off infection. There are foods you cannot eat and you effectively need to stay away from people. They suggest you wear a mask. [Something I did for the first time on Wednesday, and I have been neutropenic many times before.] As a result of being neutropenic, they took the few flowers out of my room and left them in the hall (for reasons I never really cared to understand). And when I showed a slight fever later in the day (a little over 99), they told me that going home on Sunday was not in the cards. I had to get a few shots (on May 8th and May 10th) to help boost my white blood count. I was incredibly bummed about Mother’s Day. Jen was home with the kids and all four grandparents were there. I had hung-out with Lenny and Helene on Friday night (after they drove from Philly as soon as Lenny was done working) and saw my parents on Saturday (and nearly every other day). They were all on rotation. But getting home for Mother’s Day was something I really wanted to do. Plus, and definitely more important, Jake’s birthday was the next day — May 9th. The reality set in that I was not going to be there for his birthday or his party after school. That sucked. And being the jack-ass that I am, I mentioned to him that it was possible (on face time a few days earlier) that I would make his birthday. Jen knew that was stupid when I said it several days before. And she was of course right. While I was able to put this in perspective after the initial disappointment, Jake had no real idea what was going on (Daddy was in the hospital because he had an infection and he thought I was coming home for his birthday after I said so just days before). Plus I was not at home. So Jen, like with everything else, had to deal my mess. No surprise, she handled it like a champ. Jen blamed it on my Dr., and then asked my Dr. to get on the phone with Jake and tell him that it was her fault (which she did, explaining that she decided I needed to stay in the hospital for a few more days). According to Jen, who was in her car on blue tooth, Jake kept his composure while my Dr. was on the phone, but towards the end even the Dr. felt the tension and Jake was going to blow-up. When my Dr. hung up, Jen told Jake he had permission to say whatever he wanted about the doctor (including a swear word if he was so inclined). What he said is hysterical, but not something I want to put out there. [Plus it is hearsay coming from me, so if you want to know, give me a call and I will put Jen on.] Jake was ultimately fine, and Jen and others who were at the party (including my parents), told me he didn’t think once about me not being there. [Thanks much Jake. If you read this at some point, know that I am not planning to miss any more birthdays (or Mother’s Days).]
- I had another round of chemo on May 12. The day before I left. This time it was vincristine plus a new one — pegasparagase. [This turned out to be a tough chemo for me. And sure enough, about 5-7 days after getting it, I always felt like crap or developed some issue (blood clots, cholesterol etc.]
- Jen drove me home on Friday May 13. Same day as my first post. I was nervous, excited and uncertain (probably) about what was to come. I remember talking about doing in 2 weeks what they said would take 3-4 weeks, and Jen suggesting (and me agreeing) there was no way life was going to be “on pause” for six months. Sitting here now and writing about this after eight months is pretty wild. The side effects were minimal after the first two plus weeks and, while I was told it was going to get worse, I had no idea what was really in store or just how long this would take. We often say if we knew then what we know now, it would have been different. No thanks. I wouldn’t change a thing. And don’t want to ever do it again. Plus, with monthly trips for chemo and quarterly spinal taps through 2019, it is going to be impossible to forget. That is OK too. It is necessary. If they told us the maintenance was extended another year (or two), that would be OK as I plan to be cancer free forever (although I might ask if we could stop the spinal taps; already thinking about the next one…). I am definitely going to be “me” coming out of all this, as I know no other way to live. [I have some business/ski trips planned starting at the end of January, though I appreciate it is a marathon not a sprint and need to play everything by ear.] But I am pretty certain that this has changed me forever. Time will tell. Right now at least, notwithstanding that I feel like crap after getting my ass kicked for eight months and have developed a case of insomnia (mixed with excitement), my head is firmly affixed and my eyes are wide open. Just like when Jen drove me home on May 13. My beard, however, is definitely longer.
Josh Sussberg 