Stop Being Selfish!

As Medium becomes more successful, I find I have to search harder for the pieces that are strong, resilient and either tell or story or outline a thought or idea that interests me. What I don’t have problems finding are the top 10 reasons… or how to…. This story has nothing to do with either of those examples, but I hope it’s something you find strong, resilient, etc.

In 2008 I was diagnosed with a form of cancer called Multiple Myeloma, a bone/blood cancer for which there is no cure. Tom Brokaw, Geraldine Ferraro, Roy Scheider, Peter Boyle —these are all people that made or are making this disease more recognizable. The good news is there are great strides being made towards finding a cure. The bad news is people are dying every day. The other good news is I’m not one of those people. The other bad news is, I’ve lost two close friends to this disease in the last two years. Why does this matter to you?

I watched Deadpool on the plane to London. I had heard that it was inappropriate (as a father of two kids under 13) but I had forgotten the issue at the base of the story (spoiler alert — he finds out he has cancer just after meeting the love of his life.) Life was over for him. He wasn’t going to let his caregiver suffer through his decay. Then an opportunity for a cure occurred, but he’d have to become a superhero. His conversion to superhero involved torture, yet he never lost his sense of humor. His was a fictional story, but going through chemo, dealing with steroids — well, when I was curled up in fetal position on day 5 after my stem cell transplant, it felt like torture. Luckily I got my humor back, after watching 7 straight episodes of Swamp People.

The world, and God, work in mysterious ways! Deadpool had the right attitude, he wouldn’t let the world get to him. As a cancer patient that’s the challenge you face everyday.

The other issue is Cancer makes you selfish. Anyone that tells me they’ve just been diagnosed, my first bit of advice is be selfish! You’re in a position where you need to focus on you. The ONLY person you need to care about, besides you, is your caregiver. You still come first, but the caregiver is your life blood. That’s the person that will mop up after, get you water, ward off the masses or just leave you alone to deal. You need to remember that.

When you first get diagnosed you’re dealing with a few conflicting feelings.

Oh shit, I’m going to die.

I’m going to set the example, be strong and fight this thing!

…so anyways, tomorrow I’m going to go to the store and get that thing…(uhm, that river in Egypt…you know it…Denial!)

If you don’t find a way to face the issue and set out how you’re going to deal with it, you get stuck in a feedback loop that is difficult to resolve. In my case I didn’t want anyone to call me, I didn’t want a support group. I was part stalwart, part ostrich and a small part scared shitless. Luckily, I was able to control the disease for a time, and when it did eventually return, I had a mindset about me that allowed me to focus. With a large number of friends we had a number of events “Promoting Global Hair Loss.” Since I was going to lose my hair, I enlisted a number of friends, from Zurich to Hong Kong, to lose their hair with me.

I then had my stem cell transplant.

A year later, I was wondering what I would do as my next event and I remembered the Empire State Building Run Up occurring while I was in the hospital for my transplant. As this would be my one year anniversary (my re-birthday) what better way to celebrate than run (walk fastly) up 87 flights of stairs!

My purpose? I was doing this because I can — and so many people I know can’t.

I was the Spirit Of Hope recipient for that race and was allowed to make a quick speech. I spoke about three friends I ran for — all of whom had their transplant about the same time as me. In February of 2014, my two year anniversary (my 2 year re-birthday), I wrote about stray kittens. This was my analogy comparing making friends who are cancer patients to naming stray kittens — if you name them, it only hurts worse. This post was written after the first of my three friends passed. And last year another of my three friends passed, after a horrific battle. The remaining friend is in the UK, fighting continuously, battling the disease, but more importantly, battling the side effects of having a compromised immune system.

I’m being very selfish as these are MY friends — I’ve written about them, named the stray kittens per se. Of course they had other friends. Friends who spent more time with them, were married to them, who will miss them more than I can ever miss them. I’m writing this about them because I can. Just like I ran up the Empire State Building-because I could and they couldn’t. But I have to balance this effort at carrying the torch, spreading the word, with selfishness. I’m writing this because I Can. What does that say about being selfish?

Why do I feel like this? Is it me being selfish? Luckily, I had a friend, who lives in the ‘hood, was diagnosed around the same time as me, who went through the TBL12 joke of a drug trial with me. He helped set me straight.

You see, I’m now three years past my stem cell transplant. What does that mean? As mentioned above, there is no cure for this disease. You have chemo to fight off the cancer so that you can harvest your own stem cells for a transplant. When re-inserted you hope they forgot how to make the Cancer. Bottom line, more often than not, the disease will re-occur within three years. So you can fight, but chances are, the disease will come back. You don’t want to be that stray kitten but there’s not much you can do about it. All the numbers point to the fact that the disease reoccurs within 3 years.

So I had my bone marrow biopsy (I think this was number 8 or 9 of those) in April. My quarterly blood work helps to highlight if the disease is visible but it’s as if you’re looking from 30,000 feet. The bone marrow biopsy takes you right down to Street View. You get back a genetic reading — what genes are in place, misplaced, half grown, etc. At the end of the day, it is the for certain clarification of what remnants of the disease, if any, remain in your system.

my results came back, “no trace of the disease.” And I’m not sure if I’ve ever felt worse.

I got my results in April and I’ve not said a word. I’m not sure why and I guess it’s survivor’s guilt or something similar. I’ve lost two close friends, my stray kittens, in the last two years. I’ve got other friends who are going back in for treatment (Carmen, Jeanie) but I’m here free and clear.

Let me be straight, I still have the risk, I still have to get quarterly blood work done to monitor any re-occurrence. I’m not out of the fire, but I’ve passed the first milestone, which means my prognosis just moved from good to GREAT. The comment from my doctor was (paraphrased), “if clear at three years, the prognosis is 10 years plus, and in that time we’ll find a cure!” The selfish side is ecstatic!

It took my TBL12 buddy to set my mind straight. He said that others might actually appreciate the fact that there is a chance at good news. And that’s why I’m writing now, because I can.

If you’ve read till now, thank you. There are a lot of people out there that aren’t in my position, whether it be Multiple Myeloma or something else. And most of them have that Deadpool attitude because the other side of that coin is too tough to bear. You either fight or flee and there are so many strong people out there, fighting every day. Realize they are, don’t treat them different, help where you can, but understand how strong they still are — or they may just tell you to f@ck off! Sorry, I got a little Deadpool!

Thanks for reading!