2016 Challenge

Ten Years with Cancer

The other morning I laid next to my infant daughter while she played on her mat. In what has become somewhat of a morning routine, I sang to her as she looked at me smiling and cooing. We went from CSNY’s Our House (her favorite) to Simon and Garfunkel’s America (my favorite), to Richie Haven’s cover of Here Comes the Sun (our favorite).

The night before, I sat on the couch crying to my wife after I had read the news of Dan McQuade’s passing. Dan had a rare type of Cancer. One that I also have. I didn’t know him personally but Defector (and Deadspin before it), have been a part of my life for a really, long time. His passing broke me open. A couple of days ago marked ten years since my initial diagnosis. I have spent those years running a marathon. I’m tired. Physically and mentally, and I’d like to talk about it.

During the summer of 2014, I started to feel really sick. It was a couple of months after my Zeyda’s passing and I was working at the Genius Bar having just transferred from my original store to a new one. I have always carried my stress and anxiety in my stomach, so I thought that the sudden onslaught of GI issues I was experiencing was related to that. Eventually I decided to see a GI. Not knowing where to start, I reached out to the same doctor that treated my late uncle for his colon cancer. After performing a Colonscopy, I was informed that he found evidence of Crohn’s disease and would start me on a medicine called Flagyl to help treat my symptoms.

The details of the next year and impact it had on me physically and mentally are really its own story. For the sake of brevity, I’ll just say that I was the most physically sick I have ever been. Most days I couldn’t leave the bathroom, I could barely stay awake, made numerous trips to doctors and emergency rooms, racked up medical bills, had to leave two different jobs, and ended a relationship. I went from 250lbs to 177 in 6 months.

Not only was I not getting better, I was noticeably worse and declining rapidly. My doctor refused to change my meds or re-evaluate his findings and after a few months of unreturned phone calls I started looking for a second opinion. A friend of mine at the time was dealing with her own Crohn’s battle. She sent me to her doctor at Mount Sinai. From the moment I met Dr. Marion I was sure that I would finally get answers. After finally receiving my medical records, the first thing he said to me was “there is no evidence of Crohn’s or colitis in your colonoscopy. I do not know why he told you that was what you have. We need to do your tests again.”

I remember waking up from that colonoscopy and hearing the nurse talking to the patient in the bed next to mine. She said “everything went great, you’re doing fantastic, eat some crackers and drink the juice and we’ll get you out of here in no time!”. When she got to my bed, I asked “how did everything go?”. Her response?

“Oh…the doctor will be over to talk to you about what he found”

“FUCK…”

Dr. Marion came to my bedside and said, “I found something at the end of your colon and intestine. It’s a tumor. I believe I already know what this is exactly but I need biopsy confirmation. I do not want you to worry or panic. Do I look panicked? No. Because I am not. We will figure this out. You will be okay, we will handle this together.”

I was in fact, panicking.

A few days later, I get a call explaining that what they found is a neuroendocrine carcinoid tumor or NET. It wasn’t very large and it was slow moving and not aggressive. It had likely been there for years and they think they found it early enough. I still needed additional testing to see if there was any metastasis. Dr. Marion would be unable to continue treatment as this is a highly specific and rare type of cancer he does not treat but fortunately in my case, Mount Sinai is one of the best in the country at treating and researching these tumors. He already had a doctor to connect me with and had everything scheduled. I hung up the phone and my heart sank.

Cancer.

That is not what you expect to hear at 24 years old. I was scared, confused, and everywhere but present at that moment. I remember the flood of memories hitting me and feeling like I was drifting in and out of time. I was having a very large panic attack.

Dr. Marion, made sure that I transitioned into the care of Dr. Michelle Kim (one of my favorite people on the planet and an absolutely brilliant doctor). She took me in, spent as much time and attention as I needed to understand the weird intricacies of NETs and how they are treated and immediately got me in for a series of scans that seemed straight out of a SciFi movie. After multiple rounds of imaging, they confirmed that the tumor had not metastasized and appeared to be only in my intestine. Surgery was set for two weeks later.

The period of time between the end of January and February 19 is a blur. The only thing I can really remember about it was that two of my very best friends in the world, Chris and Devon, took me out for a final pre-surgery dinner. We walked around SoHo and went to SoHo park and ate cheeseburgers and onion rings. The dinner was delicious. It is one of a few positive memories of a very dark time that I cherish.

I took this picture from my hospital bed on the morning of February 20th 2016. It was the day after my surgery, and I was incredibly grateful for the private room and view. I thought it was really pretty. I was on a lot of painkillers. I think about this photo a lot.

The surgery itself went well and was successful. They got everything they went in for. They noticed that the tumor had what is called “lymphatic invasion” so they took around 16 surrounding lymph nodes during surgery. Only 4 came back positive which led my doctors to believe there was a high likelihood it didn’t get a chance to spread anywhere and they got it in time. My bloodwork stabilized (Serotonin came way down, Chromogranin oddly never went up to begin with), and my follow up scans looked good. They put me on a plan of following up every 3 months, then every 6, then every year. Same routine, blood work and scans with an office visit.

I spent the rest of 2016 getting my life back on track as best I could. While searching for a job, I made a clear effort to reconnect with myself, friends, and the world around me. I started to love living life again and spent as much time as I could walking and being out of the house. So much of that year after my surgery felt like a chance to do things over (I even went back to work at Apple!). Even the parts that sucked or didn’t work out…they felt normal. It felt like normal life things that just happen to people rather than this big life altering event. It was nice to feel that way after the previous two years.

Going through my first bout with cancer at a young age and coming out of it gave me a new outlook and appreciation for life. It forced me to grow up really quickly. It showed me what was really important, who I was as a person and how I could continue to grow and be better.

I am now going to summarize 2017-2024:

- I reconnected with and start dating my now wife

- Moved out of my moms apartment

- Ashley and I move in together

- I start my first real adult job

- Covid

- We got engaged!

- My insurance company rejected my doctor’s request for a follow up CT and MRI as not medically necessary or relevant because I had one the year before and they would only cover one every other year. She launched multiple counter claims and they still said no. FUCK UNITED HEALTH CARE.

- We adopted Elle!

- We got married!

2024

I scheduled my check in with Dr. Kim for early in the year. She is now the head of her department at the Cleveland Clinic so she sees me remotely and orders scans and bloodwork locally. Through the magic of technology (and more data sharing than I’m probably comfortable with) she can receive and read all my results from NY. First up, CT scan. Nothing showing. I’m thinking I’m in the clear.

Next up, blood work.

WHY THE FUCK IS MY SEROTONIN LEVEL IN THE HIGH 400’S

Dr. Kim has the same question, she just wasn’t as expressive as I was about it. Maybe it’s a blip.

Bloodwork gets re-ordered. We’re back for round two.

WHY THE FUCK IS IT IN THE MID 500’S

Dr. Kim continues to share my curiosity. She orders a PET/CT scan to find out more.

I was told I would have the results in 24-48 hours.

48 hours after that, I was sitting at Citi Field on opening day unable to enjoy any aspect of the game (not just because of the Mets but I can understand why you would think that). It was cold, I was shaking with anxiety, I was miserable. My mind was racing. I was not present. Two of my best friends could feel how sick I was over this and they couldn’t help. They knew. They just stood by my side. I was checking my phone for an alert from MyChart every 30-45 seconds. Nothing.

Ash and Elle are out on Long Island with Ash’s family. The plan was to take the train out to them after the game. Just as the train starts to pull into Ronkonkoma.

PING

It’s a MyChart notification.

There were notable findings in my liver. It lit up like a Christmas tree. Results are strongly indicative of metastatic disease.

My heart sank. I cried. I shook. I went into a fugue state. My wife saw me get off the train and held me. She knew and I knew. Dr. Kim ordered more tests to confirm but the subsequent MRI revealed around 15 tumors in my liver. Luckily, they were small and only showing up there. Dr. Kim made sure I started working with a local oncologist at Mount Sinai who has also been wonderful every step of the way. She explained this wasn’t going to be like last time. There was no perceived permanent solution for me this time. She made sure to explain to me that while seeing “Stage 4 metastatic neuroendocrine cancer” is extremely terrifying to read, if caught early enough like in my case, is closer to managing a lifelong chronic illness. It’s serious but we’re in as good a spot as I can hope to be in with “many decades” ahead of me. Lanreotide would start immediately and we’d monitor how I responded to it. Both of the boards at Mt Sinai and Cleveland Clinic agreed that this is the best path forward.

Therein lies the rub. There is no cure for this cancer. It is chronic. It is something I hope to die with and not from. There is a lifetime of management. A lifetime of running. I am lucky in that as I write this, my treatment is one comically large slow push needle given once every 28 days into alternating ass cheeks (my wife refused to photoshop BALCO over the needle…in sickness and in health my ass) but there may be a time where that changes. I know that in the future I could be starting down infusions, surgeries, chemo, radiation, embolization, and more. I have been told by many doctors that the treatment for NET’s and neuroendocrine cancer has evolved to be almost completely different than it was 10-20 years ago and they have hope and belief that similar progress lies in the near future.

Sitting in the waiting room or treatment room of a cancer center is one of the hardest and most humbling experiences you could ever have. It doesn’t matter who you are, where you come from, what you believe in or what you do. Cancer doesn’t discriminate. I have heard heartbreaking conversations and seen some truly devastating things. I’ve seen kids. I’ve seen children (both kids and adults) helping their parents. I’ve seen and met people that I’ve never seen again and have no idea how they are or what happened to them. I think about their faces often.

I’m getting physically fatigued. I’m tired. I’m sore. My body aches, it gets cold easier. My skin is cracking and bleeding in ways it never did. I get blood drawn every time I’m in an office for a visit or treatment. My formerly easy to poke forearms are getting sensitive and bruising easily. I get scanned every four months to monitor potential growth or further metastasis. I now see an oncological cardiologist once a year to make sure that I have no scarring or calcification of my heart and heart valves. NET tumors are unique. Mine secrete a slew of hormones and proteins that can cause serious organ damage and failure. One of the biggest being Serotonin. Excess Serotonin generated by tumors in the liver have a high chance of causing scarring and calcification in the heart which can lead to open heart surgery. Luckily since treatment, my serotonin numbers as well as my 5 HIAA plasma markers (the measure of how Serotonin exists in your bloodstream over time) have all been in range.

We endeavor to persevere. It’s a mantra my therapist gave me years ago and it’s one I continue to carry on. Ten years in, I am getting mentally fatigued and burned out. I am simply tired of being sick. I am tired of living under a microscope. Of being poked and prodded multiple times a month if not a week. I’m tired of the unending EOB’s, pre approvals, insurance fights, travel, side effects, fasting, and constantly forcing myself to stay active and in shape. I am tired of the unending anxiety and worry. I am tired of worrying what the government will do next to possibly rip my insurance coverage away. If we ever lose protections on pre-existing conditions, that is a literal death sentence. If they stop funding new research it may lead to an earlier death. I am tired. I live my life in 3-4 month sprints between scans. I try to make sure that for as long as possible, that anxiety is as far away from me as I can get it.

Yet, despite all of my fatigue, my anxiety and my fear, I remain optimistic. Hopeful even.

It goes without saying but the love and support of my wife has been second to none. She has been by my side the entire time (aside from the BALCO thing). It is impossible to lose faith with her next to me. She is the best wife, friend, and partner I could ever imagine or ask for. Grateful doesn't cut it. I owe her in ways I will never truly be able to repay.

Elle has been the best dog I could ever ask for. The unconditional love and affection that she gives daily is a gift. How she came into our lives was a blessing. How she has impacted it has been a bigger one.

Amelia. My first born. My shining star. My singing buddy, my little yapper. You are the greatest thing we have ever done. I love you more than I knew I could love another person, and you repay that love every day, by repeatedly shitting yourself in my arms, while I’m changing you, and right after I have changed you. You look at me, you smile, you laugh, and you coo and I honestly couldn’t care less about any of the gross horrors you put me through. You are perfect and I love you. Your smile makes everything else disappear. You are the greatest gift and a blessing to your mother and I. I want to make you proud of me, always. You are my biggest motivator.

The staff at every office and treatment center has been nothing short of remarkable. We’ve gotten to know each other, learned about each other’s lives, and I make sure to bring them coffee and munchkins when I can. These good kind hearted people make a choice every day to support some of the most sick and vulnerable people, and do it with a seemingly unending reservoir of kindness and empathy.

In Dan’s incredible piece talking about his battle, his words evoke a shared experience and sentiment. The statement “my life is an endless runner. But I am going forward until I hit a cactus.” Is one that has stuck with me since I read it. I’ve often had this cancer described to me by doctors as a marathon and not a sprint. It’s how I have explained it to others. I also operate the same exact way. There is simply no other option but to move forward and I will not stop until I have to.

There are other parts of Dan’s story that I know are unfamiliar to me now, but serve as a possible glimpse into my future. Those parts scare me and I’m not afraid to admit it. If or when I find myself in that position, I can only hope that I can channel even a fraction of Dan’s bravery, humor, optimism and strength in my own fight. Like with any shared experience or struggle, that is one of the greatest gifts that any one of us can give each other. I will miss Dan and his writing. I hope and want to believe that he is at peace.

If I can leave any of you with something it is this. My cancer is treatable. It is manageable. It’s deadly but not a death sentence. My doctors are all optimistic so why won’t I be? I am here ten years later. I am tired. I am beaten. I am fatigued but I will do what I always do and trudge along fueled by spite, anger, and hope. My body wants to take me out? Fuck you I’ll live. If not for me, for my daughter. For my wife. For my dog. To see the Mets win ONE GOD DAMN WORLD SERIES and the Islander to win ONE FUCKING STANLEY CUP. I will live and I will do so with relentless optimism. I have often said this to people when we talk about this subject, but I, like many others, do not want to be remembered for having cancer. Cancer doesn’t define who I am, but it has helped make me who I am. When the time comes I want to be remembered for who I was and for the life I lived in spite of it. I want to be remembered for the things I’m passionate about and how I made people feel (hopefully positive). I hope to be here a really really long time, and I hope to continue to build as many memories with people as I can. I want those memories to outweigh any thought they have of me being sick. My cancer is presumably with me to the end but it will only be a part of my life, not the entirety of it. Don’t be weird about it. I choose to live a life that aligns with my favorite IDLES album. I choose joy as an act of resistance.