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That Time I Had Cancer

That Time I Had Cancer


That Time I Had Cancer

Posted: 31 Oct 2015 10:29 AM PDT

(This is a highly personal post so if that isn’t your thing then you should move on.)

On Friday, October 23 I breathed a sigh of relief as my oncologist told me that my six month PET/CT scan was clear. I am cancer free!

High Noon

High Noon Stand Off

It’s an odd thing to sit on that thin crinkly sheet of sanitary paper in a small bland room staring at your oncologist’s framed diplomas, trying to keep yourself distracted from the news you’re about to receive. You get to thinking about how the vowels and consonants that make up that crucial sentence can change the course of your life.

It’s terrifying.

If you’re new here or want to refresh your memory here’s some background on my cancer diagnosis and journal entries about my treatment.

Happy Birthday

I had a birthday once. It was awful.

On October 3rd my family celebrated my 44th birthday by eating at Fleming’s Steakhouse. My birthday is an important date but not exactly for the traditional reason. It was a year ago on that date that I was diagnosed with Follicular Lymphoma after landing in the emergency room after dinner.

Part of my decision to eat at Fleming’s was to thumb my nose at cancer and what it had done to me. In the year leading up to my diagnosis I’d had ever frequent bouts of stomach pain. Over time I figured out that it was often linked to eating steak.

Since the end of my treatment I’d been feeling great. I could eat and drink anything again. So I was going to go all Genghis Khan on things and get a truly epic steak for my birthday.

But later that night I didn’t feel well. I had pain and other symptoms that felt all too familiar. Over the course of the next few days I was in various levels of discomfort. I was waking up in the middle of night. I even had to dip back into my stash of anti-nausea medicine so I could drive my daughter to school.

I was freaking out. I was certain my Lymphoma was back.

I took walks with my wife around the neighborhood and talked about how we might handle things and what it might mean. It wasn’t so much having to go through the chemotherapy again that scared me. I could handle that. And I knew that the treatment was effective. But the question was for how long? If it came back so quickly, how long would I be able to use that treatment? And would I be consigned to doing three rounds of chemotherapy a year just to … stay alive?

I was psyching myself up to tackle whatever it was that was put in front of me. I refused to lose and knew I had to be in the right frame of mind. I was really more concerned about how it would impact my wife and daughter. Being a spectator to a loved one going through something like this is no picnic. I didn’t want my daughter to grow up with me constantly going through chemotherapy. Don’t get me wrong, it’s better that than me not being there but it made me sad and very angry.

I finally sucked it up and bullied my way into getting a blood test at my oncologist’s office and moved my PET/CT scan up by two weeks. I got a copy of the initial blood test results and my white blood cell count was elevated. I feared the worst.

A few days later I was able to go back into the oncologist’s office to review my blood test.

Science

Jesse Pinkman on Breaking Bad

The nurse practitioner I saw regularly during my treatments (who is awesome) gave me the news. While my white blood cell count was slightly elevated the liver enzyme that was the best indicator of cancer was … normal. It looked like I had some sort of infection but, from where she stood, it wasn’t cancer. She theorized that it might be my gall bladder since it had looked a bit enflamed on one of my early PET/CT scans.

So I wasn’t nearly as terrified as I might have been sitting in that room waiting for the news. Because I’d handicapped things since getting this additional information. There was an alternate theory for my symptoms. And it was based in science and interpreted by experts. Who should I believe? My own passing analysis or hard chemistry and decades of expertise?

I was still crazy worried but my (dominant) logical side was able to talk down the emotional side from going completely apeshit. Sure enough it turned out I had nothing to worry about. I’d kicked cancer’s ass and it had decided not to come back for another beating.

This is a good segue to talking about what it’s like having cancer.

That’s Not Helping

Lemur With Hand Up

Almost all of the messages I received were positive and helpful. But just like when you’re expecting a child you wind up seeing more pregnant women I noticed a lot more posts about cancer.

One of the things that irked me the most were posts that claimed traditional treatment (chemotherapy) is just a big pharmaceutical profit center. The idea being that they don’t want to cure cancer, they just want to treat it.

Screw you.

I’m not joking. If you’ve shared something like that you’ve hurt people. Full stop. No wiggle room. Because what you’re saying is that I’m stupid for trusting my oncologist. You’re also throwing shade on a group of doctors who truly do care about the people who are unlucky enough to get cancer. And yes, it’s just luck.

I don’t want to hear about anti-cancer diets. Again, when you post about that you’re basically telling people they ate their way to their cancer. Think about that. That’s a pretty shitty thing to do to someone. “Hey, you probably got cancer because you ate wrong.”

You smoke two packs of cigarettes a day or eat five pounds of bacon every week you’re certainly upping your odds. But most people don’t fall into these categories. I certainly don’t. I never smoked. I haven’t had fast food in twelve years and gave up soda five years ago. I got cancer. It wasn’t my fault.

I researched my ass off when I got my diagnosis. See, I’m pretty good at digging things up on Google. Hell, I knew so much that I had a decent conversation with my oncologist about the potential treatment regimens I had available. Yeah, she was impressed I referenced the BRIGHT study comparing the two treatment protocols.

Yet, look what happened? I had myself tied up in knots thinking my cancer was back. But all it took was looking at one liver enzyme level and knowing that my other readings were “always all over the place” (i.e. – noise) to know that it wasn’t.

You don’t know better.

I’m not saying you should blindly accept everything as fact. But the tin foil hat conspiracy theory stuff is not helping anyone. You should not be messing around with the mental state of someone with cancer.

Positive Work

Staying Positive Is Hard Work

Staying positive while you’re going through cancer is … work. I know I lectured you about how science is what truly matters but it’s not always that black and white. I believe that staying positive and believing that you’re going to beat cancer helps. When sick I often visualize my white blood cells attacking and destroying whatever is trying to take me down.

I would often chant ‘I’m going to be okay’ over and over again for long periods of time. It was just something I would do reflexively to convince myself. To give myself strength. To give whatever my body was doing extra momentum to kill what was trying to kill me.

But you’d have to be certifiably insane (or on some seriously good meds) to not think about the alternative from time to time. I’m an introspective guy too so I could go deep down that rabbit hole if I let myself. So it was an effort to stay positive. It was … a persona I had to create to ensure I survived.

Silence

Enjoy Music Bar

After my sixth and final round of chemotherapy and the resulting clean PET/CT scan I stopped updating my CaringBridge page and essentially stopped talking about cancer. I didn’t even return emails from a few friends and family congratulating me on the great news. #sorry

The thing is, I was tired. I’d been thinking about cancer every day for the last seven months. Sure, my day to day life hadn’t changed that much but it really had … consumed me. No matter what you were doing it was always lurking there in the back of my mind. I didn’t want to think about it anymore. Even though it was a good result I just wanted to move forward and have things go back to normal.

It’s also strange for me to process. I’m proud to be a cancer survivor but I also don’t want to wave that around like some sort of ‘card’ I can play. Many of you also heaped praise on me for how I wrote about and approached my cancer. While I sincerely appreciate those kind words it sometimes makes me uncomfortable. What I did and my writing about it helped me. So in many ways I feel like I’m being complemented on being selfish.

But I’m glad that others have taken something positive from my journey. I sincerely wish all of those going through cancer (or any hardship) the very best.

Friends

Right in the Feels

I was also overwhelmed with the outpouring of support from friends and colleagues. That was … very special. Of course I expected some responses. I’m not a complete social pariah. But what I got was so much more than what I expected. I hope I can give some of that back to you (in a less dire way) in the future.

I can’t thank all of you enough for the kind words, unexpected Tweets, random IMs and emails. I hope you know just how important that out of the blue message can mean to someone. It certainly made me think about reaching out to folks, even if I’d lost touch, which is something I’m apt to do.

One special thank you to Leeza Rodriguez who provided some incredible insight and recommendations, particularly on dealing with nausea. Because of her help I was able to find the right mix of drugs in a shorter amount of time. It made the last three cycles of chemotherapy far more manageable.

Overall I’m just humbled by your collective kindness.

Winning

Stephen Curry Winning

I will still periodically hoot or shout or grin like a maniac thinking about how I did it. I beat cancer! Doing so was both very difficult but also not so bad either. I try to downplay it sometimes but why should I really?

I had the idea for the title of this post for a few months. I was sort of scared of it. Because it treats cancer in an almost flippant way. Then I had my little rollercoaster ride and I thought my fear was warranted. I’d taken things too lightly. Karma.

But as you can see I wound up using the title. I won and cancer doesn’t deserve my respect. It may come back at some point but I’m not going to let myself think that’s going to happen anytime soon. And if it does come back I’ll kick it’s ass again.

Future

You always hear how having cancer or having a brush with death changes you. Suddenly every day is supposed to be more precious. Priorities are supposed to change and you’ll do those things that you were putting off for some future date.

Maybe that’s how it is for some people. But not me. Part of this is because I’m already living like that. I’m my own boss and make a very good living. I work from a great home and get to spend my days with my gorgeous wife. I am really there as my daughter grows up. My parents live 45 minutes away and I see them at least a couple times a month.

I’ve lived in places ranging from Washington, DC to San Diego. I’ve traveled abroad and can afford vacations to Hawaii or anywhere else I want to really. I get to sit and binge watch Dark Matter. My daughter and I rush out to the back yard to stare up together and watch the International Space Station pass overhead.

A life full of small moments is my reward.

That Time I Had Cancer is by AJ Kohn, originally posted on Blind Five Year Old.


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