#help ive spent too long editing it i hope it somewhat makes sense

[colinfeatherington]

I finally posted the first chapter of my polin fic! Let me know what you think!

[jessefferguson]

My Double Life: 5 Years And Going

It’s been a LONG TIME since I wrote one of these, so I figured now was as good a point as any.

Words, spoken out loud, are funny. They can mean very different things.

Try this one:

I am still here.

and

I am still here.

Both of those are the best summary I can think of for how I feel today since today, May 21, is the 5th anniversary of when I was diagnosed with cancer. Five years ago, I sat in a sweltering doctors office in Washington, D.C. as he told me the results of my first biopsy. Five years later, I still have it.

After 5 years, I have two conflicting emotions: I’m still here (thank God) and I’m still (only) here. Five years later, not much has really changed but, also, everything has.

Over the 5 years, I’ve sort of lived a double life – that of a cancer patient and that of a political operative. Sometimes they overlap but, more often than not, they’re separate worlds.

By my best count, over the 5 years, I’ve had 4 surgeries, 33 days of radiation, upwards of 60 rounds of either chemotherapy or targeted therapy, about 75 blood tests, and 150 doctors’ appointments. And over the same 5 years, I’ve worked on 191 television ads, 311 polls, thousands of press releases and speeches, spent over $100 million (of other people’s money), and sent over 40,000 of my own tweets.

I continue to believe the same thing I did – and wrote about - 5 years ago, there are three keys to getting through this sort of thing: (1) Your family and friends; (2) Doctors who are the best; (3) Doing something with your time that you love to do. Even on the worst days of work, the fact that I was doing the work I wanted to do made it that much more possible to fight a disease I did not want to deal with.

WHAT’S THE LATEST WITH ME

I’m living and working from Brooklyn, still. I decided to stay here after the Clinton campaign ended rather than move back to D.C. for a bunch of reasons – closer to my doctors at Sloan Kettering and further from Trump at the WH. Both sounded like good ideas.

For just under a year, I’ve been on a clinical trail and it’s getting some pretty good results. It’s a targeted therapy drug and I’m one of the first to apply it to my unique disease. It’s unlikely to result in me being “cured” or “cancer free” but it’s definitely shrunk the disease in my skin tissue and throughout my head, neck and chest. It’s also brought down the swelling. The swelling issues are far from gone, but they’re better. The best case is that it continues shrinking things; the next best case is it stops anything from getting worse again. Either way, it’s turned my condition to a chronic one, for now. I’ll take it.

Every three weeks I do the same routine. I book a someone to come clean my house for that morning and I take a car down to Sloan Kettering.  I take a blood test. The doctor and I talk about medical stuff for a few minutes and politics for a few minutes and then he sends me for treatment. He’s not from America and has a healthy interest in all the crazy things in our politics.

It takes them about 2 hours to prepare the drug, so I have found a corner in the hospital that is usually empty for work — open the laptop, put on the head set and get to work. It’s my own cancer-center-based mobile-office. I have edited TV scripts and polls, held conference calls, did a radio interview and even convinced a donor to contribute – all from a table in a hospital waiting room. Last week’s discussion was about the placement of a media buy. It’s amazing what you can pull of when people don’t really know where you are.

The drug I’m on is an easy one – targeted therapy. It’s like a smart bomb of chemo that only goes to the cells that have the disease. The worst part is the IV, which I barely notice anymore and after 30 minutes, I’m out. On the road home to a clean house with the mild side effect of an uneasy stomach for a few days. Compared to the other drugs I’ve been on, this is like a piece of cake took a walk in a park.

How long will I stay on it? No clue. But it has made this condition chronic. If you offered me a deal today — get this treatment every 3 weeks for 30 minutes and the disease stays under control, I’d sign in a minute. I’d sign it for the next 10 years. For now, I’ll stay on it unless or until it stops working – then I’ll try something else.

WHAT HAPPENED SINCE 2016

As you may remember from my last blog post, just before election 2016, I had spent the previous 6 months working while dealing with the return of my disease.

On election night 2016, I did venture out. It wasn’t something I did often but I wanted to be with the team that night at the Javits Center in Manhattan. I could, now, try to pretend that I had doubts about the outcome of that night to try to make myself look extra smart, but that would be bullshit. I didn’t; I thought we’d win.

The beginning of that afternoon and evening were great. We were monitoring voting and doing the work we needed to do and I was also seeing some good friends who I had been away from while I worked the last few months from home.

Then, the results started and the mood changed. My heart started to sink, but I kept hoping. Florida, North Carolina, Ohio and others poured in. We knew we needed to hold Michigan, Wisconsin and Pennsylvania to make it work.

While we waited for those results, I got up to go to the bathroom. As I stood at the urinal, a friend who had better sense for numbers and data than I do, approached the stall next to me. We looked at each other with the same forlorn look of despair as if our confidence was waning. He said “I just looked at the latest data from Michigan; it’s gone.”  And with that, I found out we had lost in a way befitting the occasion -- standing at a urinal.  

Whether you believe we lost because of a mission from Russia or a miss in Michigan, or any other reason, one thing was clear: we lost the electoral college. It was over. And while I stared at my peers and colleagues – friends who had hired me and  friends who I had hired – I couldn’t stop thinking, “What’s next?”

Despite what you might see or hear, the group who I worked with on that campaign were some of the smartest, most talented and most committed people I’ve ever had the privilege to work with. As I stared at all of them, I wonder what was next for them. As I thought about it more, I worried what was next for me.  

At one point, I wandered away and ended up sitting in the middle of the massive loading dock in the Javits Center with 4 senior staff from the campaign. There where shipping boxes, fork lifts, and one table with a few plastic chairs in the middle. We all just kind of stared at each other. Someone would say something about what we should do or what we should say and we’d all agree but, for the life of me, I couldn’t tell you today what anyone said.  

As the night ended, I was one of the last ones to leave. I’m not really sure why, I just couldn’t. I kept finding someone else to talk to. I was trying to be a bit of team cheerleader – as best as was possible at that moment.  

At around 4:30am that night, I left the Javits center along side two reporters I had gotten to know. We walked for a bit and then they got into cabs and drove off. I just started walking. And walking. I was thinking about what had happened and what it meant for the country. And, if I’m honest, what it meant for me. I had cancer and had just devoted two years of my life to trying to win the presidency – and had failed. I just kept thinking, maybe even crying a bit, and walking.

When I looked up, it was 6 am and the sun was rising. I had walked from the Javits Center at 36th street down almost to the World Trade Center. Much like I did while wandering around the streets of Washington on May 21, 2013, I had done lots of thinking. But now it was November 9, 2016, and it was time to go back to work. I took a cab home, slept for a few hours, and opened my laptop.

WHAT HAVE I BEEN DOING SINCE

Since the campaign ended in 2016, I’ve been “consulting.” I’m still not sure what “consulting” means but it’s what I’m doing. I’m working on my own for a variety of political projects on a variety of important issues, trying to lend my experience to things where I think I can do something interesting and make a difference in the insane moment we’re in right now.

My work has ranged from the fight over the tax plan and some new digital campaign innovations, to a new polling project and an advertising campaign and others. It’s all kept me busy and kept my mind going – in the fight and doing what I love to do. The work is good cause it’s meaningful, it’s the work I want to be doing, and the variety of projects appeals to my attention-span-of-a-fruit-fly-nature.

It’s also allowed me to speak up a bit more about what I think, which has been quite a change. For the last 15+ years, I’ve always represented someone else – the DCCC Chairman, Secretary Clinton, etc. Now I’m speaking more and writing more in my own voice.

I still feel somewhat like a hermit. I live and work in my Brooklyn apartment. I get out more now than I used to, but, nothing like I did when I was healthy. When you’ve been dealing with this as long as I have, you start to lose track of what looking, feeling and being normal would be like. I get to the deli almost every morning and they know to make my eggs and have my iced coffee ready. Others around know me too. Life is easy and that’s important for me right now. One of these days, I’ll be up for making it harder again – but not yet.

THE HEALTH CARE ISSUE

The first project I took on was to help some friends with the coalition fighting the Obamacare repeal legislation. It’s been a hard-waged battle over the last 16 months to improve health care for people instead of letting it get dismantled.

But it’s also been the first time my double lives overlapped a bit. When the Affordable Care Act passed Congress, I was at my office near capitol hill, celebrating with everyone else. But it didn’t really mean anything to me. It was a good thing, but it wasn’t personal.

Seven years later, when repeal of it failed – repeal that would undercut protections for people with pre-existing conditions like I have – it was a very different moment. In fact, when the first repeal plan was pulled from the House floor, I was actually sitting at Sloan Kettering getting my chemo. I was on the phone talking with someone working with me while in the  hospital room getting treated as a news alert came across my computer screen.

I don’t often invoke my own personal health care situation while working on the issue because it shouldn’t be about me. I’m fortunate and would be able to get the care I needed if I had to. But sitting there at age 37, with an IV bag dripping a toxic chemical designed to keep me alive into my arm, I certainly had a different perspective than I had 8 years earlier as an otherwise-healthy, overweight 29 year old who saw passage of the ACA as a good reason to go to the bar and celebrate.

FIVE YEARS AND COUNTING

Once and a while I think about what I could be doing if I was fully healthy. I get sad. Maybe I get mad. As I approach 38 years old at the end of this year, more and more of my friends are having their first or second child and I’m forced to think if my life would be different if I hadn’t gotten this diagnosis five years ago. For sure, it would be. But, in the end, you play the cards your dealt and make damn well sure it’s a game you enjoy. You could win big or you could lose your shirt, but either outcome has to be worth it.

Five years ago I was diagnosed with a disease that probably should have killed me. Five years later, I’m still here. When I put it that way, it actually brings a smile to my face. I know talking about having cancer isn’t something that normally is joyful but being able to do what I love while living with the disease sure beats the alternative.