Friday, December 30, 2016 [started this on Wednesday, wrote a little more Thursday am, but ran out of gas in both instances…].
[NOTE: Most of this was written on Wednesday (12/28). It was unclear on Wednesday when I would be leaving the hospital. We were incredibly frustrated and disappointed after having arrived on Christmas eve. After all, when we cancelled our travel plans for December (leaving on December 24 and coming home today, December 30), we had just learned the protocol would run through mid December (this was over the summer). Although the Dr. said traveling was not out the question at the time, she suggested we stay close; we decided just to stay home. Jen planned a special week for the boys; we told them that Zika necessitated us staying in NY, NJ and Philadelphia.
Who would have ever imagined I would have vacationed for the exact the same time at NY Presbyterian / Weill Cornell?? As I finish this post on Friday morning at 8:15 a.m., I just had my temperature and blood taken (yet again). I have not had a fever since Wednesday evening around 6:00 p.m. I will be leaving after the team on call does morning rounds. 6 nights and 5 days (the same as our cancelled family vacation!). Jen and I have joked with friends all week that I do nothing “half-ass,” so why would “the end” be any different? I saved the second longest overnight hospital stay of these eight plus months (and we are close to or in the double digits for overnight stays), for when I was cancer free and done with chemo. And while this might be easier said now (as I pack things up to get out of here), this was not a big deal and I am glad to have been here: having a consistent 102 fever for several days when you have no white blood cells (because they beat the crap of you for months) is not a time to mess around. Nor do you have energy to do much of anything. I didn’t leave the room or walk around until yesterday. This was a first for me (during what we hope is our last stay).
What follows is a post that I have been writing off and on for a few days. Hopefully not confusing. I am not frustrated (or disappointed) as I type right now, but when I started writing this, we were very frustrated and very disappointed.]
I am not a huge fan of firework shows. I don’t necessarily dislike fireworks, but I always find myself craving the “Grand Finale” for at least two reasons: (1) the rest of the show is just build-up; and (2) it means the show is over. The grand finale brings it all together and is all you need to see within 2-3 minutes. Sometimes I wonder why they don’t just skip to the end and call it a day? I always find myself trying to predict when the finale will start, usually because the rest of the show is boring. And once it is done, it’s time to go (again, I don’t love firework shows).
Firework shows are not that much different from hospital stays (although I would much prefer to see a firework show). After many hospital stays over the last eight months, I am hopeful this current stay is the last one — the “Grand Finale” if you will. Having finished chemo last week Wednesday, this was supposed to be a recovery week ahead of a return to normalcy and the maintenance regime. We have incorrectly predicted the end of this hospital stay so many times, that I have given up “guessing.” I am here until the fever is gone for at least 24 hours. Whenever that is, it is.
[This has been disappointing and incredibly frustrating for us. But being this close to the goal line, being safe and spending an extra few days at the hospital is undoubtedly the right (and ONLY) approach. Does it make any of this easier? Of course not. But I will take disappointing and frustrating over the alternatives all day long. And if the goal posts move again –and we have to push back previously set goals and target dates — we will deal with it. Right now the focus is on getting rid of this fever and then recovering. A good problem to have.]
Lots of people have asked us if this stay was unexpected. The answer is yes and no. Whenever your white blood cell count is as low as mine was (and you are “neutropenic”), you do not have an immune system that is able to fight off infections. So if you are exposed to something, it is likely you run a fever and you must come to the hospital immediately (this is why I go on “house arrest,” take my temperature as often as Cameron in Ferris Bueller’s Day Off, and generally try to stay away from everyone, including Jen and the kids).
I have been neutropenic (as a result of cumulative chemotherapy) several times, including for more than 2 weeks right before we started this last 43 day phase of the protocol. I have had a neutropenic fever (over 100.4) on two separate occasions, each necessitating a run to the ER (Evan — you should start an ER service out of Scarsdale). Once over the summer (I was here for 2 nights and they determined I had “para influenza” (i.e., a common cold)) and Saturday night. Although I was neutropenic when I arrived here on Saturday, by Monday the Nuelasta shot (that I received last Wednesday) had kicked-in and my white blood cell counts have recovered significantly (0.4 on Saturday; 5.3 on Monday night; 13.7 on Wednesday am; and 15.4 yesterday (which is off the charts)) [Some of the side effects from Nuelasta, as we have read on the internet, are fevers and headaches. Who knows….]. I have had a few blood transfusions over the last couple of days (some interesting stories on a standalone basis…..), and my red blood cell count is starting to recover. Any my platelet count is on the rise (10,000 on Saturday; 59,000 on Wednesday; 75,000 on Thursday).
The problem is I have had a fever and headache since Saturday, and neither is [was] going away. So far, there are no answers as to why I have had an ongoing fever and headache; every test has come back negative thus far. It could be from dozens of different things. But until you are fever free for 24 hour straight hours, you must be in the hospital, on IV antibiotics and have blood cultures each and every time you spike a fever (even when you have no veins or access points). On Tuesday night, and again Wednesday morning, my fever was 103 and 102.7. [My last fever was on Wednesday at 6:00 p.m.; it was over 101 but it broke quickly.]
I usually am up and about at the hospital, walking around the halls, looking for snacks, chatting with willing people in the halls. This has been the only hospital stay where I have not left my room [until yesterday (Thursday) afternoon]. I have barely been out of bed. Even taking a shower is a challenge. [Two days ago, I got lightheaded in the shower and had to cut-it off early. But I did shave my head before that shower with an electric razor (quite a chore), which took a long time because I had waited several days in between, so that might explain things]. Plus I have a rash all over (which could be viral and explain the fever), and have spent a good amount of time in the bathroom after getting loaded up on meds to “help.” Do I complain? Of course. But I am not complaining (if that makes sense). I am (trying) to keep everything in perspective, and we know that this will resolve itself. Just a question of time. Nothing has otherwise changed — and that is a good thing.
And as always, there are silver linings everywhere.
- Lots of great sports the last several days (so not a terrible time to be in bed). As great as the Cavs v. Warriors game was (I watched twice as I did not really start getting sleep until a few nights ago), watching James Connor go out of the Pitt v. Northwestern bowl game at Yankee Stadium with a concussion was crushing. There was lots of hype — as there should be — for Connor in his last collegiate game. And there should have been: he won a battle against Hodgkins lymphoma in 2015 and came back to have a great 2016 season. Connor is off to the NFL.
- The boys were in Philly from Sunday through Thursday with Lenny and Helene (as was always planned) and they have no clue I am in the hospital. The boys had a blast, as always, and even got a chance to work (twice) at Lenny’s office and run around from activity to activity with their grandparents. Obviously the boys appreciate it as do we — always. [Jen went to Philly on Wednesday morning and brought the boys home yesterday morning. She called me from the car with the boys, who were completely occupied with their iPads and had no desire to chat. Jen had already told the boys I would not be home Thursday night, but instead at a holiday party in Delaware. (They know I go to Delaware all the time, so not crazy). And they were totally un-phased. Plus, they will get home from some activities today and I will be there. As if nothing happened. I would take credit for this but I obviously cannot — Jen has had everything planned, as if something was going to happen, for months.]
- I got to spend Sunday, Monday and Tuesday with Jen (she too was frustrated and disappointed, but even from Philadelphia (on Wednesday afternoon) she pulled a rabbit out of a hat and took care of me the entire time). As tough as those days were, including some in hours of silence (as a result of frustration), I love my wife and know, especially during a week like this, that I have had the easy job. I obviously couldn’t leave here. Jen was pulled in a million directions with obligations to all of her children, including the one in the hospital. I am sure there are other people who will be excited to toast the end of 2016, but in my world, I don’t know anyone more deserving of a glass of champagne than Jen. [The chances of me making it to midnight tomorrow night — 50/50 (in honor of the assigned oncologist at White Plains Hospital.]
- My Dad flew in first thing Wednesday morning and today will be the third day we get to hang out together all day. When do you get a chance, at almost 39 years old, to spend most of three days in a row with one of your parents one-on-one? [I am fortunate to have both parents (and great-in-laws). And all four are “all-weather” parents/grandparents — with us in the sun and snow storms.] While it would have been nice under different circumstances, spending time one-on-one with my Dad for three days is a blessing and I have had a great time even though I generally felt like garbage. Dad, thanks much for coming in yet again. And Mom, thanks for letting Dad take this one. Also glad he will be driving us home…..
- The support from family and friends has been, as always, uplifting. I have purposely tried to avoid most friends/colleagues as I know lots of people are away with family this week and a neutropenic fever is not something I wanted people to worry about or distract them from vacation. But outside of “family,” if people have asked I have told them what is going on. Bottom line is we are all going to celebrate with everyone soon but, as always, appreiate the outreach from many.
- I just got poked (hopefully) for the last time (blood test). So many pokes I can’t remember. I refused a blood test for the first time (a culture after one of my fevers on Wednesday; Jen refused first, my Uncle Mike was here (and he agreed), so I refused too). After several attempts at the first two IVs (both of which ended-up in my right hand and ultimately fell out at different times), the IV specialist came yesterday with a new ultrasound vein machine. I have an IV in my left arm (that I really didn’t need, but for two antibiotic transfusions), and I didn’t even feel him put it in. Where the hell has this guy been for the last eight months?? He was also a great guy. We spoke for a while, including about our kids (he has five-year old twins) and working out (he was in good shape and commented that I looked like someone who “used to” work out a lot but got beat get up pretty good. Thanks much man. [I will come visit in a few months…]
Morning rounds just finished. I’m out. The firework show is over (and the grand finale, kind of like my last chemo treatment, was anti-climatic). Feels just like the end of a real fireworks show. And I am always happy to leave. The lingering headache is just a function of the nasty virus that had me laid up for 6 days. No fever and all counts recovered, so time to go home. They even said have a “great time on New Year’s.” When I asked about restrictions, including movie theaters etc. (I need to take Jake to see Rogue One), they said “you can go wherever you want.”
Time to start the recovery process. Albeit a week later than expected, when I am home now I don’t need to worry about getting a temperature while neutropenic. One day at a time. But let’s get it on.