Tuesday, December 20, 2016. This post is a long time in the making. A post I intended to write months ago. But things happen when they happen.
My first post was on May 13, 2016 — the day I got home from the hospital. I am not even sure I had decided I was actually going to post something before I got home that day. In any event, “Chapter 1,” which details our first day and night at the hospital (April 27, 2016), was posted on June 1, 2016. Many details from the 16 days we spent in the hospital for the “induction” phase — on both the 14th (Chapter 2) and 10th floors (Chapter 2.5, which will follow) — are firmly stuck in my brain.
I stayed on the 14th floor on Wednesday night, Thursday, Friday, Saturday and Sunday (through the evening). Late on Saturday (April 30) they told us one of the few private rooms on the 10th floor was going to open up on Sunday night. The 10th floor is the Oncology floor, with a dedicated team of doctors and nurses. This made total sense to me and was my preference all along. I just could not get my head around sharing a room and bathroom with someone else that I didn’t know for 3-4 weeks under these circumstances, so we stayed on the 14th floor the first couple of days because that was the only option if I wanted my own room. [May was actually the only time that a room on the 10th floor was available at any time we stayed in the hospital; the private rooms on 10 are usually reserved for people that must be alone because they had a transplant etc. In all other instances, it is two to a room]. The 14th floor was nice. And I liked the staff and nurses. They would bring by newspapers in the morning (including my NY Post), the food was good and you could order multiple entrees (which I love to do), there was a great snack closet and they served my father (and anyone else interested) a glass of red wine in the late afternoon (although this was “discontinued” after my initial stay). But the 14th floor was not “real” in the sense that you did not know why someone was staying there (could have been for cancer, elective surgery or anything else in between). [This might have been a good thing at the get-go looking back on it.] My only complaint: there was some glitch in the TV system and I could not get the first round of the NFL draft on the television (Thursday, April 28), which was the only round I really cared about. The hospital got this “fixed” by Friday and I watched more draft coverage then I had in years, including the third round when the Cleveland Browns selected Shon Coleman. Coleman beat acute lymphoblastic leukemia (t-cell lymphoblastic lymphoma gets treated the same way) after being diagnosed in 2010. He watched the draft at St. Jude’s Research Hospital.
Jen slept over Wednesday night. And we had lots of family around before we went to sleep. [My brother-in-law Justin came by that night with a bottle of MaCallan; I told him it probably made most sense for him to take it home with him and we would drink it together when this was all over…] By the morning (even though I had barely slept that first night), the pain from the procedure the day before had subsided and I was ready for breakfast and a shower. I shaved my head that day (I had not yet been told to stop using a straight edge razor), but I made a conscious decision to let the beard start growing.
I remember Jen being conflicted that morning (as she has been throughout these past 8 months). She wanted to stay with me, but she had not seen the boys in 24 hours. [Truth be told, Jen is never really “conflicted.” She knows what the right answer is and always goes with her gut, but that doesn’t mean she doesn’t feel torn doing it.] And while the kids were in great hands with Helene, Jen knew she needed to be around. Of course I wanted Jen to be there with me, but there has never been a doubt in my mind that she knew exactly what she was doing and I always follow her lead (though I may question her from time to time).
Jen also knew that lots of friends and family were going to come say hello over the next couple of days. So she immediately started figuring out, beginning on April 28, 2016, how to juggle everything — and she has yet to drop a ball. Including making sure that I was NEVER alone at the hospital those first couple of days. I even had my Mom and Uncle Mike sleep over the next two nights! [Uncle Mike really enjoyed the scrambled eggs and bacon the morning after our sleep over. He also scared the crap out of me when he put a Darth Vadar helmet on for his sleep apnea. As I told him, and vividly recall the sounds, the mask did NOT help his snoring (but I wasn’t sleeping much, so it was fine)].
There was a lot to take in during a very short of period of time. I found out I had cancer on Tuesday, was admitted to the hospital to start immediate treatment on Wednesday (for potentially 3-4 weeks), and I was told that I would basically be taking a timeout from life as we know it for “about 6 months.” And then there was the stuff I would find on the internet (which I knew I shouldn’t be reading for a whole host of reasons) in the middle of the night when I couldn’t sleep. A bad habit that I still maintain. But being positive has always been the way I carried myself, and there was no reason to change because of T-Cell Lymphoblastic Lymphoma. In fact, quite the opposite. And I had every reason to be positive. Including how comfortable I felt the moment Dr. Roboz walked in the room, especially after she said that, while this would suck, everything was going to be fine.
Sure, I remember them putting in the first IV’s, getting my first chemo treatment (described below) and staring at the ceiling in the middle of the night, but my 16 days in the hospital — and frankly this entire experience — has been more about the unbelievable support from family, friends (old and new), partners and colleagues than the treatments and what has admittedly been a long grind. And as I sit here describing a 16-day hospital stay to begin a long run of treatment for something I never imagined would have been our 2016 or any year for that matter, what I remember most about the hospital is the emails, texts, phone calls and visits. [I am forever grateful, humbled and appreciative for all of them.] It was euphoric. Which is wild because we were about to start our biggest battle yet (although you don’t even know what you are fighting or what really is about to happen). All the more reason why the support was so important; it kept my attention and focus away from the nonsense, dark thoughts and uncontrollable elements of this horrible disease (and while there was/is plenty of time to think about this “stuff,” you just cannot let it take over). Connecting and reconnecting with so many different people was the best medicine any doctor could have ordered. [I am so lucky to be able to say that and I appreciate that not everyone is as fortunate.] Being someone who loves to tell stories, if you came to visit, you were definitely privy to “live” versions of the blog posts (likely with added color) that describe the lead-up to April 27 (including the (mis)diagnosis). I loved every second of every visit (and there are so many memorable moments, including where people from some of my different worlds collided — and it was never awkward). I loved responding to every text and email, usually for several hours in the middle of the night. I loved the phone calls and conversations that followed. I still do.
I felt good each of those first four days on the 14th floor. Even after three days of chemo. Yes I was on steroids and pain medication. But the “side effects” didn’t kick in until Chapter 2.5. And the reality that I was going to truly hit pause on so many things that were part of my life had not fully registered. I was still following (and included on) all work emails for those first couple of weeks, dialed into a few court hearings from the hospital (just to listen) and I was convinced that I was going to figure out how to get back from this in record time; I did not yet understand that there was a set “protocol,” so no records to be broken. I also had ambitions about doing all sorts of things since I was feeling was fine.
After being connected to fluids (and pain meds) for 24 hours, the first chemo session was on Friday, April 29, 2016. I had been given a calendar for the month of April and May (which I still have), so I knew I would be receiving two chemo treatments on April 29: Daunorubicin and Vincristine. I was also scheduled to get Daunorubicin on both Saturday (April 30th) and Sunday (May 1). In addition, I was started on a high dose of Prednisone (a steroid) for 26 days beginning on April 29 (with a dose of dexamethasone on each of April 27 and 28 in advance of chemo).
Your first chemo session is hard to forget. I also had no idea what chemo really was. I was obviously familiar with cancer and knew it was treated in many instances with chemotherapy, but I didn’t know what was actually involved. There was a special nurse that needed to come to the 14th floor and handle the chemo (appropriately called a chemo nurse). This was the same on the 10th floor. Only a chemo nurse can handle the administration of the treatment. Once she arrived (which was later than we expected and I was getting very antsy), I tried to make some small talk. This chemo nurse was all business. My nurse for the day from the 14th floor was also there, and before I knew it they both started putting on Hazmat suits. As I would learn, this is necessary anytime that chemotherapy is handled (there are actually lots of articles out there on secondhand chemo (thank you Lenny) and the precautions that hospitals are taking to protect people). All of which was amazing to me and makes me shake my head now when I think too much about it. If the people handling the chemo are wearing suits and gloves to avoid touching the poison — I remember not only thinking this but actually saying it out loud (in a joking way) — what did this mean for me if the stuff was actually going into my body? Before getting started, the nurses did a chemo check (which is why they always need two nurses for chemo). The “bag” of chemo (and all bags of chemo) had my name, birthday and patient ID on a label/sticker that was placed on the bag when the chemo was “mixed.” As did my hospital ID band (which you must wear in the hospital or for any out-patient chemo treatment). One nurse read my ID band out loud (“Joshua A. Sussberg, 01/18/1978, 6367752”) and the other cross-checked the bag (same info, so we were good). They asked me to confirm who I was as well. [I didn’t think too much about it at that moment in time, but if you are going to get chemo it definitely makes sense to be certain you get the right one].
After the chemo-check, the chemo nurse “hung” the chemo (I’m a pro now, but when she said was going to hang the chemo I just wasn’t sure what to say), and then ran a small tube from the bag of chemo through the machine on the IV stand and directly into my IV. She pressed a few buttons on the electronic machine fixed to the IV pole and the chemo started dripping. I watched as the tube filled up with the red substance from the bag and made its way into my arm. Kind of weird. Felt a little cold at first. Before I could think too much more about it, it was over. About 40 minutes. The vincristine infusion was next and that was even faster (about 10 minutes). I was waiting to feel something after my first two chemo treatments, but didn’t. Other than my pee being orangish/red for the next 24 hours (and some major constipation that Dr. Roboz and team ultimately cured), I felt fine. Frankly, I felt better than I had in months (largely the result of steroids and pain medication, but also because the tumor was literally shrinking from the high dose of steroids). Treatments on Saturday and Sunday (both Daunorubicin) were similarly easy to handle. Feeling OK and being surrounded by family and friends before, after and during the treatments had me energized and thinking this was not going to be so bad. Even when friends (who had seen loved ones go through this) explained that the initial “buzz” of it all would wear off and the effects from the treatments would pile up, I knew it was true but I didn’t really care. I was in a good place. [Just like I am right now, even though I feel like garbage after getting my ass kicked the last couple of weeks and know I will need blood and platelets tomorrow, in addition to the last bag of chemo for 2016. Generally speaking, I have been in a good place throughout. But I have definitely complained. At times, I have been a huge pain in the ass (usually to my family (although I try to apologize every time)). And there are moments when I’m not “positive” and have questions that I know cannot be definitely answered.]
Someone from my doctor’s team mentioned on one of the first days that I should not eat anything from outside the hospital. As much I always loved the Jay-Z/Eminem song Renegade, this didn’t seem like the time to be a rebel. So I ate the hospital food (even though some people were bringing me delicious looking food and snacks). I used the special (a) Cholorhexidine Gluconate Soap that the hospital gave me for the shower (which is a red liquid that helps protect against infection, but annoys me for no particular reason) and (b) mouthwash that would protect against mouth sores (which I ultimately got anyway), generally stopped using my straight edge razor as soon as I was told cuts could lead to infections (I say “generally” because I still used/use it for clean-up on my head but I am always very very careful), and did a good amount of walking around the floor (although Jen always was pushing me to do more). But by Sunday, after effectively eating the same thing four days in a row, I decided to “ask” the team on rounds whether I could eat something from outside the hospital. One of the first pictures posted on this site (dated May 3rd with the caption “Starting Off Strong . . .”), was actually taken on late in the afternoon on Sunday, May 1 (the food (Jackson Hole) and picture care of Shai and Nicole). I got the green light to eat anything I wanted (but to stay away from street vendors etc.). After finishing up that meal, my friends helped me pack up my stuff — including some new books, magazines and a few stuffed animals from friends who stopped by — and I was ready to move to the 10th floor. I was pissed that I had to be escorted in a wheel chair, but it was hospital policy. And we were off…..
It is now 12:25 a.m. on Wednesday, December 21, 2016.
Have I mentioned that today is our last day of chemo before the eight-month protocol is in the books?