RINGTONE OF “WHO LET THE DOGS OUT?” PLAYS
I remember thinking how funny it would be to program this dated song as my ringtone as if it were still a top ten jam. The looks that would come my way as my phone asked its unanswerable question would be “hilarious”… however, I just find it annoys me.
But there my phone sat this Tuesday morning – ringing… singing… questioning. I answered.
“Hello, Greg – it’s Dr. Fleshner”, the voice quickly stated.
I’ve learned over the years that when a doctor calls it’s best to be short and to the point. And in this case, I especially wanted to get down to business. I knew why he was calling. He must know something.
“Hi, Dr. Fleshner,” I answered without emotion and quickly thought about the 9 previous months leading me to this moment.
Back in September 2012, my son Tanner was diagnosed with a brain tumor and what began was a personal hell that would uproot and shift my life forever. I had lost my mother when she was 49 to cancer and now was being faced with the very real prospect of losing my son. Even with a successful tumor resection, the odds were not going to be in his favor due to the severity of the tumor.
Friends, family, coworkers, colleagues – all gathered around, offering their love and support. It was a beautiful thing to experience in the shadows of something so dark and it was interesting to see how people would fall into certain “types” when trying to lend support. That ever important line as to what different individuals feel is and isn’t ok. I’m not judging. After all, I have a voice and no problem letting someone know when that line is being crossed.
So there we were. Me, Marlo, Casey… and Tanner. Dealing with the worst of the worst…the unthinkable. Actually, Tanner (in true T$ fashion) wasn’t dealing with it, which was to be expected – a skill that would ultimately benefit his longevity.
Now, somewhere during these first few months of Tanner’s diagnosis someone looked at my mom’s young age when she was first diagnosed and Tanner’s – with that came the question… could there be a genetic element to this? Many of you reading this are probably all too familiar with things like BRCA1 and BRCA2, but what many don’t know is there are other mutations that lend themselves to different cancers. Since my mom was no longer around there would never be a way to know 100% as to whether or not she had it, but her early death was about as close to a confirmation as we were going to get.
So, Tanner gets tested – he tests positive for p53…. Wait, what’s that?! What’s a p53? – I leave the Wikipedia-ing to you, but in short, p53 is a protein your body produces whose main job is to suppress cancer/tumor growth. When yours is mutated it just means you’re more likely to develop cancer at some point in your life (doesn’t mean you will, but your odds go up about 20%)… Tanner, unbeknownst to anyone (because it’s not widely tested for), had this mutation, which impacted his body’s ability to fight off the cancer that developed in his brain. There is even a fancy name for this… it’s called Li-Fraumeni Syndrome (I can hear you Googling it now).
Li-Fraumeni is incredibly rare (could also be because it’s not something widely tested for), but it’s there. We’re all at risk out there when it comes to cancer. This mutation just means you’re more at risk. As for knowing this about Tanner, it doesn’t do much – he already got cancer and now we were dealing with it.
The next step was for Marlo and I to get tested. While p53 can happen spontaneously in someone, it can very well be genetic… at this stage of the game I knew this was merely a formality - after all, only one of us could have it and I’m the one with mom who died at 49 … in the immortal words of NSYNC, “it’s gonna be me!”… and I was right. After giving blood and waiting a couple weeks, I got confirmation that I too was positive for p53… the only difference is…
….and I feel healthy (with the exception of the emotional nightmare I was currently undertaking).
Could cancer be lurking in my body unbeknownst to me? How have I been able to go this long with not so much as an incident? As I stood there looking at my son fighting for his life (in his own Tanner way), I (his father) was also at risk and could also find myself in that hospital bed battling the dreaded C.
So, what now? I know all about p53 (Li-Fraumeni)… but what do I do? Do you ignore it? Do you live your life and hope for the best?!
For me? I had to take action – Tanner had put his life on the line to discover this and it would be for nothing if I didn’t do something… but what exactly? I guess make sure I don’t have cancer… right? Then, go from there.
Working with a genetics counselor and cancer screener, I began what would ultimately turn into an 8-month process of holding my breath as I subjected myself to a list of tests that would give me as clear a picture as possible as to my current state of health. There was a brain scan, the removal of a mass in my foot that had resided there for years, a full body PET/CT scan, blood tests, more blood tests, and some more blood tests for good measure – all this while trying to be emotionally present for my son.
You see, at this stage we knew Tanner would not win his battle. It was simply a matter of time. How much time? Who the fuck knew? Back in November, after MRIs had shown there was new growth happening, the doctors told us it could be anywhere from a couple weeks to months… and here we were – March 2013 and Tanner was going strong – We had celebrated a birthday and Thanksgiving in the hospital, Christmas at my Aunt Jackie’s where I got to dress up as Santa for him, New Year’s Eve, and Mother’s Day was coming up – he was so excited. Amidst all this, there was were my weekend pancake breakfasts he loved, trips to Amoeba, burger stands, arcades and so many other things that made this remaining time with Tanner so special… so valuable… so unforgettable…. And still, I was dealing with my own personal fight to get some sort of “all clear” (would that even be possible?)
So, there I was… March 2013 – Pretty much all I had left was a colonoscopy. Most people are advised to start having them when they’re 50… with p53, it’s suggested to start at 25… Wha, wha, WHAT?!?! 25? 2-fucking-5? I’m already 18 years late on my first colonoscopy? For whatever reason, something inside me was waiting for that hiccup and I felt if it was going to be anywhere, it was going to be where the sun don’t shine… so, I prepared…. mentally. As with tests I had already had, I always had that place inside ready for whatever was going to be thrown at me… my philosophy has always been a rather simple one
…hope for the best, prepare for the worst…
I was ready to tackle the colon. Once completed… once signed off… once given the “all clear”… I could perhaps exhale and put myself aside while spending what I considered far more important time with my son (as well as my family)...
I physically prepared and drank things no person should have to drink, thrusting upon my digestive system a blanket bombing of gastro juice that would annihilate anything I’d ingested for the past 43 years of my life… “Oh, there’s that Tommy’s chili burger from 1992.”
In I went, knocked unconsciously – colon probed… I recall waking up and turning to the GI doctor with a “so how’d it look in there” expression.
He looked back, “14 polyps.”
My faced, half out of it, looked oddly at him.
“That’s a lot of polyps,” he said.
And he was gone. I took this all in. He didn’t seem concerned, so that’s good, but he said it’s a lot…so what the fuck does that mean? I know nothing of the colon so have no frame of reference. All I knew was this – I had 14 polyps – 12 were removed and biopsied – 2 remained that were too large, but samples were taken to be biopsied as well… I went home.
Within 24 hours, I was emailing doctors at some of the nations most prestigious institutions to gather as much information as possible as to what was happening inside my colon and how it could relate to p53 since colon cancer isn’t one of the more widely associated cancers with it? Most importantly… what do I do with all this intel?
March ends and April begins – I would spend the next month and a half sorting through endless amounts of information about my colonoscopy results. While all but one of the ployps removed were precancerous (a very common marker – most precancerous ones don’t turn) all appeared to be benign. There was one though… one of the two that still remained inside of me… it was nasty. It was marked as High Grade Dysplasia… that’s not quite cancer, but it’s close and until it’s removed and thoroughly cut into the doctors won’t know whether or not there are cancer cells in there already at work…. The hard fact is this - knowing I was p53 made me get the colonoscopy otherwise I would have waited to do it when we’re all told to… at 50. Without question – had I waited, and based on what was in there, I would have had colon cancer. Plus, I had no symptoms prior to the colonoscopy – so, I got to chew on that for a while.... Oh, and did I mention that I’ve still got a son dealing with his illness progression?
After sifting through my options – getting second and third opinions – hearing about the least invasive (an EMR – which is simply removing the polyps themselves) to one of the most (a subtotal colectomy - removal of the colon), I settled on the latter.
While a subtotal colectomy sounds awful, there is no external bag and function pretty much resumes to normal once they remove the colon and attach my small intestine to my rectum. A major surgery, but one commonly performed. Yes, I could have probably gotten away with the less invasive but given my family history, my predisposition to ployp growth (by way of an additional blood test in which I tested positive for a polymorphism) and the simple desire to prolong my life as much as possible, I opted to be more proactive. I’m the Angelina Jolie of the colon if you will. It was both preventative and, depending on who you talk to, necessary.
Armed with a kick ass surgeon, I set my sights on May 18. Whatever was currently inside me just needed to chill the fuck out until I could get it the fuck out. Still, sitting around for a month-and-a-half with something inside you that could be turning into cancer (if it isn’t already) is NOT fun no matter how early it’s caught.
As the days moved along, I continued to enjoy the quality time we’d been blessed with Tanner. He had shown small signs of illness progressing. We had begun using steroids to help keep the tumor growth at bay. He gained weight – he gained more weight… Throughout it all – his strength never wavered. He was an inspiration. Whenever I questioned what I was doing or felt I was dragging my feet on something in relation to my own health, I quickly reminded myself that I wouldn’t have had any of this knowledge if it weren’t for Tanner (you have to remember – I had NO symptoms whatsoever.)… My son had taken a bullet for me and while it was still TBD if it was caught in time I owed it to him to make sure I saw it through sooner than later. God, or whatever you are out there, make this experience have some sort of silver lining.
Tanner was getting more tired and my surgery was 5 days away. I had to accept the real possibility that I could be laid up in the hospital when he passed away. While it might be easy to say “well, put off the surgery until you’re through this,” you have to remember I had a ticking bomb inside of me, and a son who had proven to his doctors that he would not follow their timetable. So, how long do you wait? Until it’s too late and it turns to cancer? What if it’s already cancer deep inside that thing? The more time that passes the more at risk I am. If I wait too long then this has all been for nothing. The knowledge my son has given me has been wasted. I must go through with this surgery and hope he just continues to hold out.
Friday – May 17… I mentally prepared and started operation colon annihilation part deux … something wasn’t right. I was deeply concerned that Tanner wasn't going to last much longer. He’s wasn't too symptomatic beyond a few headaches that were treatable and growing tired at times. That said, I knew he was enjoying watching daddy run to the bathroom all day. But then he didn’t want me to go into the hospital – he was scared for me. I even called the surgeon unsure of what to do. He gave me the best answer he could.
“If you don’t show up we’ll reschedule,” said Dr. Fleshner in his monotone voice. He was good either way.
Exhausted from a day of bathroom visits and uncertainty about Tanner, I went to bed at Marlo’s house. My parents, having flown in from Seattle, would pick me up in the AM and drive me to Cedars. That night Marlo took me aside. Her thoughts? If something is going to happen, it will happen tonight before you go to the hospital. I prayed she was wrong. I wanted Tanner to hold out longer. I wasn’t ready to give him up. I closed my eyes and tried to sleep as Friday turned into Saturday.
Tanner passed on Saturday May 18 at 10:45am… he was surrounded by all of us – showering him with love. My surgery would have to wait. While Dr. Fleshner would eventually get word as to why I was a “no-show”, I have to wonder what went through his head in those hours I was supposed to be at Cedars preparing to go under his knife.
We laid Tanner to rest on Tuesday, May 21 – I sat and listened to Marlo and Casey eulogize the most special boy in our life. I too had some things to say, but something was nagging at me – or rather throbbing deep inside. It was unfinished business sitting inside my abdomen. It was the thing that would keep me from being able to move ahead no matter how slow that movement would be. I was unable to bring this chapter to a close because for me the chapter was continuing. This thing inside of me… whatever its current state… needed to be taken the fuck out, so I could exhale.
I wasn’t sure how much longer I would need to wait until I could go under the knife and take care of this bs, but after much emailing, the possibility of flying to NY to do it, and let’s not forget the rest of life I was dealing with, I settled on June 10 – same surgeon, same hospital… now it was inevitable… but the question now was, what’s awaiting me on the other side?
Greg’s Three Possible Outcomes:
1 1) All clear – no cancer
2 2) Cancer cells found but within the colon wall – no further action necessary
3 3) Cancer cells found, but also in the lymph nodes – let’s talk chemo.
And that’s what I was faced with as I awoke from surgery on June 10 (coincidentally, my son’s brain tumor was discovered 9 months prior on September 10). The surgery went great, my recovery was on track and all that remained was the pathology results of my colon and that nasty mofo that sat inside inside of it. After 4 nights in Cedars, which included a 24 hour addiction to dilaudid, I returned home – each day getting more and more energy. Dr. Fleshner had said post-op that he wasn’t concerned by what he saw, but I remained skeptically optimistic….see above for my philosophy.
I got through the weekend and still no word… I didn’t take it to mean anything. Sometimes it just takes time…I just wanted to breath again. I would play out both scenarios in my head and how I would deal with each. I knew if I didn’t hear by my post-op appointment on Wednesday that I would go in by myself and make Marlo (my chauffer for the day) wait in the car. I couldn’t have her in the room if the news was bad… I think she might just combust from emotional overload.
Monday night, June 17 (two days before my post-op appointment) I found my mind drifting as I tried to sleep. Hearing the bad news echoing in my head and then reminding myself it’s probably fine… but that “what if” loves to creep back in and fuck with you…. Just sleep.
“Who let the dogs out?! Who Who Who?! Who let the dogs out?!?!”, played as I emerged post shower on Tuesday morning. The phone read “Restricted”… probably Marlo. I answered with a simple “Hello?”
“Hello, Greg – it’s Dr. Fleshner”, the voice quickly stated.
“Hi, Dr. Fleshner,” I answered without emotion.
“Yeah, everything looks good. No signs of cancer,” Dr. Fleshner states matter of fact. Just what he expected.
I had prepared myself with a follow up, “Can I ask a dumb question? Is there ever the risk of a false negative?”
“Nah, it’s good. All looks good. We’ll see you tomorrow for your post-op right?,” Dr. Fleshner questioned.
“Yeah, I’ll see you then. Thank you for the remarkable job you did. So no sign of cancer?,” I said, needing to hear it one more time.
“All looks good, no signs of cancer there,” Dr. Fleshner politely concluded.
During the phone conversation, I played back the last 9 months in my head at lightening speed. My chapter is over, but my story isn’t. This was very good news. But news I did not want to celebrate because at what cost did this good fortune come to me…my son – I had to give up my son and it’s something that I’ll never be ok with. It’s me who’s supposed to sacrifice myself for my kids, not the other way around. But here I am, the one month anniversary of his passing, blessed with life and missing the warmest of embraces from one of the cuddliest, sweetest guys I know… my boy, my Tanner.
I will be dealing with this, this p53 mutation, this Li-Fraumeni Syndrome, this fear of cancer for the remainder of my life no matter how long or short that is. However, it will not define me, it will not make me enjoy life any less…in fact, it’s the opposite. I plan to enjoy every day as much as possible.
I finished up my call with Dr. Fleshner - I hung up the phone...
P.S. My lower back has been hurting – where’s your pancreas located?