Monday, May 23, 2016. Long but solid day. We left for the hospital right after dropping off all three kids at school (man I love doing that), and got to the city in no time. Jen drove as I was definitely feeling anxious. But it was a good ride.
We had to wait a while on the 3rd floor, which just generally gives me stomach pains. I remember walking in there for the very first time on April 27, 2016, and thinking I was the youngest person there. And while I have only been twice since, I find myself scanning the room every time we go back. But Jen figured out that we are better off sitting in a side room where my eyes don’t wander as much looking around at all the different people waiting for treatment or to see a doctor…..
After having blood work done and getting an IV (both of which I can’t stand), we met with Maureen — one of the PA’s who we absolutely adore — and talked about the day and the next phase of treatment ahead. June is going to be intense. But it was good (more so for Jen) to hear the schedule and know exactly when the treatments are coming. Assuming things move according to the calendar they gave us, it looks like the schedule will work well around Jake leaving for camp. And with no chemo until next Wednesday, the weekend with the family at the shore is fully in tact; I cannot remember being this excited to get down there and take a huge deep breath after paying the $1.50 toll to get over the Margate bridge.
From Maureen we went to the first floor for a cat scan. Then we were back on the third floor for the infusion. I started reading a book and actually fell asleep during the treatment. Jen sat with me the entire time and, of course, grabbed a nurse each time the IV pole beeped or made a strange noise (at least half a dozen times). And I am sure the women next to me was sick of hearing Jen directing me to drink the glass of water she left on my little table. That’s my Jen.
From the treatment we went to a different building for the PET scan. This is short for a positron emission tomography scan, which is a fancy word for an imaging test. A radioactive substance (called a tracer) is shot through your body and the test looks to determine if all organs and tissues are working properly. It takes a long time for the tracer to circulate and you have to just sit there waiting while drinking a gatorade like substance every 10 minutes. The scan itself takes 45 minutes or so. By 4 pm, having just got the tracer through the IV, I knew Jen needed to get home. As much as I wanted to drive back with her, she needed to get back for the boys. [And if it wasn’t for Jen today — and her making sure everything was scheduled and the next person knew that I was on my way from the previous stop — I might still be in the city.] So Jen called Mr. Reliable, my brother Drew, who continues to amaze me every day, and of course he dropped everything to pick me up at the hospital and drive me back to Scarsdale (and Alexis, I hope it goes without saying, but thanking Drew is thanking you because you guys are a true team and I know you have your hands full). Jen of course didn’t leave me empty handed. Neatly packed in a Quaker Ridge Lunch bag was an omelet she made last night and a bagel with cream cheese and lox. I ate it pretty quickly after my 18 hour fast (and frankly I have been eating ever since (when I haven’t been sleeping), including making Drew stop on the Hutch at the Dunkin’ Donuts drive through for an egg white/turkey sausage flat bread, to which I added bacon).
I didn’t make it to Jake’s baseball game tonight because we did not get back until well after it started. And I really don’t think I was in any shape to be there in any event, as I have been pretty lethargic. I even laid down in bed and fell asleep during the first half of the Cavs game [I woke up and it was close, but they blew it. That said, a series does not start until the home team loses a game…..] But I did get a funny text from my buddy Evan, who said we lost 17-3 and reported that Jake told him “my dad’s radioactive.” Jen had told all three boys that I had some tests today and they needed to keep their distance per the doctor’s orders. I laughed when I read Jake’s comment in a text as I could just hear him singing the song by Imagine Dragons in the back seat of the car.
At 1:22 pm today I got an email from my doctor (who is truly amazing along with the entire team at Weil Cornell/New York-Presbyterian, including everyone who helped me today). The subject line was “CT Scan” and the text of the email said: “Looks good! Lymph nodes gone, fluid gone, mass much smaller, no clots or lung problems :)).” How do you beat that? You can’t. Tomorrow is my last day on steroids for a few weeks and I am looking forward to feeling back to normal (no more crazy organizing, eating non-stop and swelling) and hopefully having a desire to start working out. And after a weekend at the shore, I am ready to embrace this next phase of chemo, even though I sense it is going to be a bear.
And yet all I can think about this afternoon and tonight is the 5 year old kid in a wheel chair that was pushed into the elevator by his young father at Weil Cornell. They got out on the first floor as I was making my way from the cat scan department back to the infusion center. A cute little kid with glasses, you could hear him in the elevator struggling to breathe. Jen knew it got to me as his father backed him out of the elevator. And when I got back to the third floor, for the first time I was not looking around to see if I was the youngest person there. I don’t know if this little boy had cancer or lung disease, but whatever it is, no 5 year old kid should have to go through that. 5 year old kids should be running around care free.
I was listening to Radioactive by Imagine Dragons tonight and thinking about the lyrics. I have listened to this song 1,000 times but have I ever really thought about what they are saying? It has nothing to do with PET scans and tracers, but instead being locked away without a key and suddenly released into an unknown world (I stumbled upon an interesting article analyzing the song.) And as I better understood what the song actually is all about tonight, I feel lucky to sit here and be numb to this song as it does not define me or my situation. I am beating this thing for my family and friends and to live a more meaningful life for many many years to come. I don’t feel like I am behind bars. In fact, I have never felt more free. But I just can’t stop thinking about that 5 year old boy and the more 13,500 kids that get diagnosed with cancer every year. These kids are in prison. And once I get myself healthy, I really want to do something about it.
16 thoughts on “Radioactive”
As I recall Spider-Man/ Peter Parker was exposed to radiation and did and continues to do some amazing things! Might be fun to take on a new super power persona through your treatment. Looking at my Team Suss wrist band SussMan seems a possibility. Fights to eradicate childhood cancer and to preserve the Cleveland way!! Bet you get LeBron and Kyrie to join a fellow super hero. Enjoy the shore. Nothing like the beach and salt water for relaxation and great fun and family time.
Kevin Love needs some radiation on that ankle. They did not look good down that stretch. But a little home cooking will get them going tomorrow.
Definitely looking forward to the Shore. A couple of days to clear the head is coming at a good time.
Hope all is well down in South Fla.
You will use your experience to help others get through their sickness…what better of a gift to have and to give away!!! You truly are magical!!
You are spot on (especially the magical part!)!
Josh – just heard from Leonard K about what you’re going through and have spent the last 30 minutes reading your blog with tears in my eyes. Unbelievable – I’d forgotten how god-damned ugly you are. Seriously, you are an inspiration, and your insights are penetrating and deeply moving. Love and prayers, Stephen Gillespie
Haha! Thanks a lot.
Was just thinking about having drinks with you in Dubai at the top of that unbelievable building. We will have to do that again soon…..
Hope that all is well with you. Great to hear you are working with LK.
Thanks for reading and really appreciate you reaching out. Let’s stay in touch.
Morning Josh. Am Facebook friends with LL, not working with him. Am at Gibson Dunn in London. Minor detail in scheme of things. That dinner in Dubai was fun. As you well know, when you’re living life you don’t always realise it. We’re very familiar with blood cancers in our family. My eldest daughter, now 22 and a university graduate had ALL when aged three and came through it successfully thank God. My 86 year old father has just completed his treatment for Hodgkins Lymphoma – PET scan in a couple of weeks time to see how he’s doing. The odds are in your favour and your positive outlook, and loving family and friends, will give you an additional advantage. None of that makes it any less tough. Am cheering you along every inch of the journey. Take care. S
Thanks much Steve, and apologies for that confusion. I knew you were at Gibson Dunn! Hope that things are going well.
You have been through a lot. So glad to hear about your daughter and I will be praying for your father. I agree that a positive outlook is key — there really is no other way.
Thanks for cheering me along and getting in touch. Looking forward to our next dinner….
Josh–Just heard about what you are dealing with. Your blog is truly inspirational. I wish you and your family strength.
Keeping you in my thoughts and prayers,
Sharon Lewis (Cardozo)
Thank you so much Sharon, I really appreciate you reaching out.
Cardozo holds a very special place in my heart. I am obviously thankful for the opportunities it has created for me as far as my career is concerned, but I am most thankful for the unbelievable wife and best friend that I found in the library!
Looking forward to getting back to Cardozo soon and giving back in a much more meaningful way on the other side….
Yo Josh! It’s elks…been a while bud. I just heard of what’s happening through a post on Jon Henes FB page. I love your blog, you have a big heart and a beautiful family. And I’m happy to see you still have that “gym strength” 🙂 my man, keep it up!!
Yo brother — great to hear from you.
My gym strength is killing me — haven’t lifted a weight in 4 weeks. First time that has happened since I was 15!!! But hopefully you are still hitting the gym hard and will squeeze in a few extra exercises for me tomorrow!
Thanks very much for your kind words — I truly appreciate it. And I hope that everything is good on your end. Will be back to 100% in no time and look forward to getting together. It has been way too long.
I’m good buddy. I will use YOUR strength to help me push through that last set today! I’ll stay in touch and look forward to setting up a get together with some of the old “ION” crew once you’re up for it. Stay strong, -elks
Sounds like a plan.
So inspiring to see that you’re taking a tough life experience and looking to turn it into so positive. It’s all about perspective…
Thanks Roger. I always used to say it was all about putting things in proper perspective. I just don’t think I really ever appreciated what that truly meant….