jessefferguson

[jessefferguson]

A Perfect 10?

I was sitting in a warm, cloistered room when they came in to give me the news. They walked in and asked how I was doing.  I responded with some non-committal, nonchalant answer like “living the dream and avoiding the nightmares.”  It’s one of my regulars.

Then they gave me the update from the scans.

That described my latest visit to my oncologist on Wednesday of last week. It also describes my doctor visit 10 years ago, today.  Ten years ago (May 21, 2013), the doctor told me that the scans and biopsy revealed cancer in my neck. It was aggressive, dangerous and a real threat.  

At my appointment ten years later, the doctor told me it was still there.  Then again, so am I.

Ten years ago, it was soul-crushing news that left my life forever altered.  Ten years later, it was good news – a regular test every 6-months that shows the disease remains under control, in check and status quo.  In other words, a chronic condition.

The same answer but 10 years apart. Expectations really are everything.

5,256,000 Minutes

So, today is the 10 year “anniversary” of my diagnosis.  I’ve been thinking about it a lot but not really talked to anyone about it. I don’t bring up my health issues often any more as they’ve receded from the ‘headline’ of my life. But, like page B27 of the metro section, the news is still there.

As I’ve thought about the 10-year mark, it’s made me think about what changes have occurred in my life and what experiences I never experienced because of the disease. I’ve definitely lost weight from the nearly 350-lb person I was when diagnosed to about 200-lb today.  But, I’ve gained weight in my face thanks to radiation treatments.

In 10 years, I’ve gone from thinking about my next career move and next opportunity to a life more focused on the work I’m doing now.  As I’ve said before, I’m not much of a “stop and smell the roses” kinda person, but I have learned to noticed that there are flowers outside.

In 10 years, I’ve probably had 200 IVs and 350 blood tests. In 10 years, I’ve probably had 25 or 30 scans (CTs, PET scans and like).  In 10 years, I’ve had 4 major surgeries and a lot of other ups and downs.

In 10 years, I’ve learned to live with it.  Sorta.

CANCERING WHILE PANDEMICING

The last few years were hard for everyone.  The tragic loss of too many people and the terrible loss of connection, interaction and basic humanity for too many more. It will take years and, even, generations to fully grasp what happened to us during the pandemic. For centuries, humanity has had biases and fears of each other based on skin color or background. Now, people feared each other because of what they might be breathing out of their mouth.

That fear has led to anger and the anger led to defiance.  The defiance may now have led to some level of resignation.

You go through a similar emotional roller coast when you’re diagnosed with cancer. It didn’t emerge in you through some rational, easily traceable pathway. It’s more random.  It feels like it floats on the air.

Throughout the heights of the pandemic, I was pretty careful and quarantined. Living in New York was eerie, as the city that is always alive but the noise went dead and silent.  The noises you’re accustomed hearing on the streets were replaced with only the blaring sirens of ambulances.  And, as someone who had a pre-existing condition, I lived in fear.  I went months without interacting directly with any human being. Eventually, aided by vaccines, I got comfortable with the risk again and reentered the world.

I made it nearly 3 years without ever getting COVID but did get it in January of 2023.  It wasn’t pleasant but I was fine thanks to vaccines. Wish we had those for cancer.

LOSS

Loss is hard on anyone.  Whether it’s a loved one or a friend, a peer or a pioneer. We all feel it differently. Over the last 10 years, I’ve lost people for a variety of reasons but the ones with cancer obviously stand out to me – people like Mame Reiley and Tyrone Gayle. They were both taken too soon, in their 50s and their 30s, respectively. I learned so much from both of them but am left to wonder what I would have learned if I’d had more time with them. Both were diagnosed after I was, a reality that makes me uncomfortable to even type.

But, none of the loss can compare to June 3, 2020.  

My dad has struggled with some health issues for a few years due to a blood cancer known as MDS (Myelodysplastic syndrome). He was diagnosed about a decade ago and had a stem cell transplant in fall of 2017.  Doctors said his condition had no relation to mine.

On June 3, 2020, he passed away. He lived a full life – and a life well lived – but losing him at 73 was devastating.  I’m not over it and don’t expect I ever will be.

But, one thing really didn’t come to my mind until a few months ago – as I started thinking about my 10th year with cancer. He was by my side through all of it – from months of treatment in Houston to daily reminders to put one put in front of the other to regular proclamations that we’d beat this thing.

There’s one very vivid memory that had somehow been stored in the recess of my brain until recently.  It was when I was first getting treated in fall of 2013 and I was in a treatment room at MD Anderson. The treatments those days were long (6hrs) and fairly miserable in their side effects. I remember one day running particularly long and my mom had left the room for a bit. Dad and I were talking.  And he said something that day and we never talked about it again. He told me he had asked in prayer that somehow he would be able to “take on this cancer for me” – that he would do it so I didn’t have to.

As I reach 10 years with this disease, I guess I’ve been asking myself lately whether his prayer had kind of been answered?

UPS AND DOWNS

I haven’t written much on this blog in the last few years because I haven’t had much “news” to update.  I’ve had a few scary moments but none of them have amounted to much of anything in the long run.

In October of 2022, I started to feel weak. My stomach was uncomfortable. I had chills and sweats. I was running a fever.  Finally, after putting it off for longer than I should, I went into the urgent care at Sloan Kettering.  When I checked in, things were stable. Within an hour of checking in, things took a turn.

Apparently, I had an infection that likely came about through my tracheostomy tube.  The infection had led to pneumonia and, at this point, I was dealing with sepsis. My blood pressure had dropped pretty dramatically and they took me into the ICU.

Fortunately, the doctors knew what they were doing. One of them was particularly arrogant. I liked him – having long believed that I like slightly arrogant doctors since they spend all day boxing with the almighty.

Through lots of days of antibiotics and other remedies, things became stable again. For a little while, my legs and feet were so swollen that I couldn’t put on shoes - I truly though I was looking at clown feet in my own bed. 

For me, though, the worst part was the timing – it was 4 weeks before the midterms.  I’d love to characterize it as some heroic gesture where I kept my phone by my side and my laptop on the table while I spent 10 days in the hospital.  I’d love to pretend like it was an act of dedication that I carried my phone on walks around the hospital while building strength in my legs so I could walk again. Honestly, none of that is true.

If there’s one thing I’ve learned over the 10 years, it’s that the world – even in the political world – will function (or dysfunction) just fine if I’m not attentive. But, my work is my distraction. It is my therapist. Instead of focusing on what I might be going through, I’d much rather take a call about an ad campaign or send edits to a polling draft.

It’s why, after 10 years with this disease, I get daily reminders that I have to enjoy my work to make it worthwhile. If you have the privilege of doing something you love to do, hold onto it.

A PERFECT 10

So, the last 10 years haven’t exactly been a “perfect 10.” There have been some bumps (both figurative and literal). If you had asked me 10 years ago whether I thought I’d be here in 2023, I don’t know what answer I would have given.  To be honest, I couldn’t think that long into the future.

But, the disease is status quo. No news is good news. I still get my treatments every 3 weeks. Those haven’t changed. But, I’m still here.

A few years ago, I used to spend time really thinking about the things that I’d lost and missed out on because of this disease. I’d been dwelling on the things I might have been doing – different trajectories on my career, my personal life, pr even a family.

As I look at 10 years, I think my perspective has changed just a little.  Sometimes in life, the path of least resistance is also the path of least return and least result.

I'd obviously never wish an illness or a disease on anyone. I'd never wish anyone had to go through what I've gone through or face the even-harder road that so many others have had with this disease.  This isn’t my effort to pretend that every cloud has a silver lining.  It’s pretty clear that cancer is a nasty thunder storm.  There’s not much silver lining to be seen.

But, maybe, you can occasionally step back and take some solace from the fact we only know about the existence of electricity because of a bolt of lightning.

[jessefferguson]

Détente

“Oh, you only have cancer, that’s good news” the Uber driver said to me. I had been coughing in the back seat of his car for a few minutes and, after seeing the worry on his face, I spoke up to put him at ease. I was telling him that I occasionally got a coughing spell due to the radiation treatment to my neck from cancer, not because I had COVID.

It was April 8, 2020 — two weeks into full lockdown — and the streets of New York were barren. I swear I saw a tumbleweed blew across FDR Drive.

The driver was, understandably, relieved. But, it stuck with me for two years — He was almost congratulating me that it was “just” cancer. Cancer’ing while COVID’ing has been an interesting experience.

It’s been a while

Having maintained this blog regularly since my first diagnosis, I haven’t written much on it in the last few years. I’ve been busy, but the news about me has certainly slowed. And, when you’re me, no news is most often good news.

But the last few weeks have gnawed at me as I realized I was approaching May 22.  Nine years ago today I was sitting in a sweltering doctor’s office with broken air conditioning. The doctor was 30 minutes late and when he finally came in, he told me what I feared he was going to say and hoped he wouldn’t.

Nine years later, I do find myself wondering what would have been different if he’d given me a different answer? Would I have taken on different professional pathways or different personal pursuits? I have peers who have reached the upper echelon of the profession and are working in the White House and others who have moved into successful business careers around the globe.  Still others are beginning to reach the age where their own kids are becoming adults.

Then again, when I’m working on a memo for a client on a Friday night after a steak and a scotch with some friends, I’m not sure anything would be different for me. Maybe.

Professionally, I’m doing what I want to be doing. They call me a “Democratic Strategist,” though I honestly don’t know what that means. Marketing and messaging on causes, campaigns, and candidates seems to be something I can do. I still don’t know how to explain it to my mom, though.

Even if I’m doing what I want to be doing, without a doubt, 9 years is a long time.

A Chronic Condition

These days, I most often think of my cancer as a chronic condition: It’s not going away and neither am I. As I think about the 9-year mark this weekend, I can look at my schedule for Wednesday of this week and see that I’m heading back down to Sloan Kettering for my regular treatment appointments — I still get them every 3 weeks.

The drug combinations have varied over the years, but it’s largely been every 3 weeks for the last 9 years. It may mean I’ve spent more time in hospitals over the last 9 years than I have any other building other than my home. Sometimes we add other things – hospital visits, radiation treatments, and the like. But there’s almost always a regular 3-week treatment.

I’d like to think my “work-life” balance through treatment is more than a routine; it’s something I’ve pretty well mastered. I know exactly when to walk out the door to reach Sloan Kettering building right on time for the blood test. At the front desk, I give them my name, my date-of-birth and I proactively tell them “no, no, and no.”  I know that they’re going to ask me three consecutive questions about COVID exposure and I already know my answers. Answering ahead means I can be on mute for only a moment from the conference call going on in my headset.

For those that haven’t seen, I use a big old-school headset when I talk on the phone — one of those that goes over your head and has a boom mike in front. I put it on when I get out of bed in the morning and most nights it doesn’t come off until I go to bed. In fact, it’s on me right now. Walking around a hospital with a headset that makes me look like I got lost on the way to the call center get you some weird looks. I’ve long since stopped giving a shit.

I zoom past the check-in desk and sit down for my quick blood test. I warn them about which veins are easier and which ones are harder to get. I help coach them through the best ways to get what they need with the minimum number of attempts. I think my veins know when I’m heading to the hospital and go into hiding. Then it’s back out into the waiting room, where I can safely assume the doctor is running about half an hour late, so I jam in a call or two.

At this point, the staff all know me, so they just tap me on the shoulder so they don’t interrupt my call and I take myself back into the room –I know where I’m going. I hang up right as the doctor enters the room. Most of the time it’s the same report; he sends me down to get treatment. It takes them about 1hr to get prepared so, I can pull out my laptop and get a little work done.  me and several say hello. The other day I met one who I hadn’t seen in 5 years. We had a nice chance to catch up.  Her kids are in high school now.

They get the IV in me. I sometimes think it’s more uncomfortable for the nurse than it is for me. But, eventually, they get the treatment started. These days I’m on what’s best described as a targeted therapy drug. It is targeted based on hormones that are overexposed in my cancer, so it has pretty limited side effects and those dissipate after 48 hours. I’ve been known to be out to dinner the night after treatment or certainly by the following evening.

As I’ve said before, if someone really wanted to get scoops about Democratic Party secrets and strategy (as if we have one), they could find out what I know simply by bugging my treatment room every 3 weeks.

It was eerily quiet in the waiting rooms during the early heights of COVID, though. They had cancelled any patients who weren’t essential, so there were these expansive waiting rooms with just 2 or 3 of us in them, sitting as far away from each other as we could and hoping not to breathe on each other. Some of these have changed as things have gotten more relaxed, though we’re all still pretty careful — It is a cancer hospital after all.

Thankfully, I’ve been able to avoid COVID so far (knock on wood).  While I’m not “immunocompromised” because the drug I’m on doesn’t damage my immune system that much, I often joke with doctors that I’m just not that keen on getting it: “I don’t need to add another malady to my list.”  Plus, as you’ve read here before, I still have a hole in my neck known as a tracheostomy that helps make sure I can breathe. It seems like a bad idea to tempt fate with COVID given what it does to respiration.

As soon as the treatment is done – it takes about 30 minutes — I’m out of there like a flash. All told, it takes me 4 hours from start to finish once every 3 weeks.  Not really much of a sacrifice when you realize that it keeps me alive. And, honestly, not much of an inconvenience either. I always text Mom on my way home to tell her that I’m done, not that it’s any different than it was for the last one, but she still asks.

Of course, it hasn’t all been smooth sailing and 2020 and 2021 had some bumps in the road.  That’s what it means to live with this disease. In June of 2020, I went in for my regular 3-month scans and the doctor saw some spots he didn’t like on my lungs. Weirdly though, my heart didn’t sink with that sense of dread that I’d felt in the past. Maybe it was because this was the 5th or 6th time I’d had this conversation over the years. This time, my reaction was: “Ok, what do we do about it?”

First, we had to do another exploration – called a bronchoscopy – where they took a look at my lungs. Not a hard procedure but definitely weird during these early days of COVID. As they wheeled my bed out of the prep room and down the long corridor to the operating room, I witnessed the most disconcerting sound I’d ever heard in all my years in hospitals – you could hear a pin drop. The halls that used to be bustling with people and filled with noise were empty and cavernous. The sound of the wheels on my bed echoed down the hall.

In the end, we just had to change the drug therapy that I was on to another generation of a similar drug and that dealt with the issue. It’s what I’m used to over the years. It’s never smooth sailing. There are hiccups and you figure out what you need to deal with them.

In early 2021, I had another bump – an infection that the doctor didn’t like. For the first time, they put in what’s called a PICC line.  It’s a line that ran from my arm into the large veins near my heart. They didn’t want to keep me in the hospital for 2 weeks but they needed to give me direct antibiotics, so they sent me home with this line. For 2 weeks, I had a bag of medicine with me pumping antibiotics into my heart. Ultimately, the infection cleared up but having to maintain that by myself at home wasn’t super pleasant.

These days, though, my cancer is a chronic condition. It does affect life. I used to be more worried about how it affected my appearance than I am today, though I’m still conscious of that too.  In the end though, you just deal with it as the price of admission. Many of people are dealing with a lot of shit these days. That was very clear as we all dealt with COVID. People are able to deal with amazing things.

In the end, I haven’t written that often on here because most of these things haven’t changed.

Hardship

Throughout my health challenges, my dad had been going through his own.  He was diagnosed with a blood cancer known as Myelodysplastic Syndrome (MDS) and had been successfully treated for it as part of a clinical trial for a number of years. He was living the life he’d always wanted to be living – running a successful business, active in the local community, traveling where he could with my mom, and much more.

2020 started out with me getting sick in January and February. It wasn’t anything terrible – just salmonella and another fever.  Either way, though, I was in the hospital twice, for 5-days each. They gave me IV drugs and I sat around doing work as I hoped the IV drugs would deal with the issue.

Unfortunately, while I was in the hospital, dad was moved to a rehab facility and things weren’t getting better. There would be good days and bad days, but overall, the trajectory wasn’t positive. By the time I got out of the hospital in New York, COVID protocols were being enforced at his rehab facility, so I couldn’t visit. In early April, we moved him to hospice care at our house in Richmond and I worked from there to be with him and with mom.  On early Wednesday evening, June 3, he passed away.  

Modern medicine gave us more years with him than we might otherwise have had, but still far fewer years than we should have had. I'd always thought we'd have more time.

His favorite description of his values came from a Jewish concept known as Tikkun Olam which means "helping to perfect the world." For all the years that I can remember, those words were literally the screen saver on his computer.  If I can be half as successful as he was at that goal, I'll count myself lucky.

Much of who I am today is because of what I learned from him. Ultimately, he taught me the most important test for every day --- be able to look at yourself in the mirror in the morning and be happy with what you see. He taught me to enjoy what I do every day because inevitably there will be moments in life that are out of your control. At least in those difficult times, you can get out of bed excited to do what you’re doing. 

It struck me then that I had been living his lesson in all those various treatment rooms, tapping away on a laptop while trying to avoid bending my elbow too much for fear it would pinch the IV line.

On his gravestone, it says a “life well-lived.” Indeed, it was. I hope I can make mine live up to that.

(p.s. as a proud son, if you ever want to read about Dad, you can read this resolution that the Virginia General Assembly passed in his honor and memory).

Losing him raised all the questions that it probably raises for most sons when they lose their father. For me, it was also hard because he’d been arm-and-arm with me through my health challenges. Not long after I was first diagnosed and undergoing treatment in Texas — almost a decade ago — I remember Dad having a candid conversation with me about what he was praying for.  He told me he was praying for something that he suspected lots of fathers would pray for if they had a sick son: For God to let us switch places. For him to suffer instead of me, regardless of the outcome. I almost laughed when he said it and dismissed it at the time.

Shortly after he passed away, I was in for my regular 3-week treatment. But that day, I didn’t do any conference calls or type any memos. I just found myself thinking — wondering if his long-ago prayer had happened.  He was gone and I was still here. Had he traded places with me?

Reflections at Year 9

I’m finishing this entry on the back deck at our family lake house outside of Richmond, Virginia. It’s nighttime, and I’m not sure how it’s possible to completely pitch black yet also completely clear, but that’s exactly what the sky has done tonight. The stillness of the water is interrupted by an occasional gentle ripple. It’s very peaceful.

I can’t fully comprehend that it’s been 9 years since I was diagnosed. Part of me never thought I’d be here after 9 years and the other part of me was 100% confident that I would be.  But my health is stable – same as it’s been — a chronic condition.

Maybe I don’t think about my cancer the way other people do, anymore. People talk about cancer as “the enemy” and how you have to be “strong enough to battle it.” I hear that a lot. I’ve said it myself more times than I can count. We talk about how “we can beat it” and we banter around the “fuck cancer” slogan.  Trust me, I get it — it’s a lot of how I feel.

But I also  I think of something else: When my dad passed away, so did his cancer. The disease that was in him – these mutated cells – couldn’t survive once he died. The cancer wants to survive, just like you do. The more I’ve gone through the last 9 years, the more I’ve come to conclude that it isn’t about “battling” with cancer or “defeating” cancer, it’s about living with it. And it living with you.

Like the Americans and the Russians during the Cold War: Mutually Assured Destruction. It could kill me; I could kill it.

So instead of risking us both dying, maybe we should just live together in détente. At least for now.

[jessefferguson]

52,560 Hours Is A Long Time

After the final episode of the VEEP aired the other night, I was wondering how long it had been on the air. I realized it was just wrapping its first season on the day in May of 2013 when I got the results of my first biopsy and confirmation about my disease.

2,190 days ago today – 6 years – I sat in a sweltering doctor’s office waiting for the results of my first biopsy. Since then, I’ve had 6 or so more biopsies, 5 surgeries, more than 75 rounds of drug therapy, 45 days of radiation and more tests than I’d like to think about. But in those 6 years, none of them is seared in my mind like that first one. I was 32 then. I’m 38 now. And, as I see 40 on the horizon, I’ve found myself thinking a lot about how life would have been different if that biopsy had been different. 72 months or 52,560 hours. No matter how you slice it, 6 years is a long time.

My Thinking

Right now, work and life are good. My health is health – it’s never good but it’s not bad, either. It is what it is.

I’m at the age where it feels like 99% of my Facebook feed is filled with the family milestones of my friends -- having kids, first steps, first days of school. Occasionally when I see those, I wonder how my life would have been different if things had gone differently 2,190 days ago. Who knows. I can’t identify a direct impact of something I did or didn’t do because of cancer. There’s no clear thing I didn’t get to do. The only thing that’s known is that it’s unknown.

My work is a huge part of my life -- as anyone who knows me can attest. I’ve never been one for ‘work life balance’ and I’m not really a stop and smell the roses type. I’m more likely to wonder how those roses would look in a candidate photo shoot or whether they’ll be around after global warming.  I started working in national politics just under 10 years ago, which means that most of the people I’ve worked with in those 10 years have known me as “Jesse with Cancer” longer than as just “Jesse.” That’s weird to think about.

2018 Election

As I’ve previously written here, on election night 2016, I staggered around Manhattan for a few hours to just think. At the conclusion of it, I got home and went back to work. On election night 2018, I feel like some of the work paid off. I spent most of the last 2 years as a general consultant on a variety of projects – doing issue campaigns, ad campaigns, polling research and independent expenditures. I was very unsure what I’d be able to do after 2016 – with the loss in the election and the reality of my health. While I wasn’t able to do everything I wanted, I continue to enjoy what I do. On most days, it’s what I wake up in the morning thinking about and what I go to bed at night worried about.  I still get to spend most days wearing slippers and sweatpants at a standing desk in my apartment.

Over the course of the two years, I have probably advised about $45 million in programs and groups but, most importantly, was able to do it without ever having to put a tie on. I’m glad. I hate wearing ties. That’s especially good news because I have a tube in my neck that lets me breath – so I can’t wear a tie even if I wanted to.

Not all of my work was directed at the 2018 election, but a lot of it was. When I saw Nancy Pelosi get sworn in as Speaker of the House, it definitely put a skip back in my step – restoring a bit of my faith in democracy. But, also, my faith in myself and my ability to help with things even while balancing it with my health challenges.

It felt especially good to see her get sworn in because she was the one – 6 years earlier – who had told me to get on a plane and go see the doctors at MD Anderson in Houston. Those doctors ended up saving my life.

I didn’t go down to DC for her inauguration, though. I could make up a lot of fancy excuses why I didn’t go, but, to be honest, I would have needed to wear a suit & tie.  C-SPAN works just fine.

How I Ruined One Of My Favorite Shirts

Even as I work, health concerns creep up. I’ve had a tracheostomy tube since 2015 when they put it in for that pesky reason that it’s good to be able to breathe. Anyone who has had one can tell you there is occasionally some blood in it – that’s normal. It’s a foreign object that doesn’t belong there. 

After the last few years, I’m not a ‘run to the hospital’ kinda guy – I’m used to most of this. But by 2 am on Sunday, January 5th, 2019, it was clear there was a problem. Throughout the day that Saturday, it had gone from a little wisp of blood to blood soaked. At one point, I coughed in my bathroom and blood splattered all over the mirror above my sink. Probably time to find a doctor.

I packed towels and tissues around my trache and jumped in an Uber. The car had nice leather seats. I was worried I’d stain them. By the time I got into a hospital gown, the flannel shirt I was wearing was blood-soaked. One of my favorite shirts went into the trash can.

Even at 2 am, the staff there mobilized to figure things out. We did some tests and cleaned some things up. It helped. Out of an abundance of caution, they changed the tracheostomy tube to one that more securely protects my airway but doesn’t let me make any sounds – I can’t speak. That’s always been my worst fear since I got the tracheostomy. I talk for a living. It’s possibly my only redeemable skill.

Over the years, I have gotten really good at working from a hospital: I know where to tell them to put the IV so that I can still bend my arm and type on my laptop. The food tray makes a great computer desk. I know how to talk on a conference call while shielding the beep-beep noise if a heart monitor makes noise. I know how to take over the visitors’ reception area on the floor in the hospital after hours and turn it into a mobile office. If the Russians ever figured out to bug my various infusion rooms and hospital beds over the years, they would have figured out quite a lot about the Democratic Party.

I was in the hospital for about 10 days. The good news is that they have a delightful short rib on the menu and pancakes for breakfast, so I was fine. Oh, and about ½ way through my stay, they changed the tracheostomy back to one where I could talk. That was good news too.

It healed up. I took an Uber home. Since then,  it’s not given me any real problems.

Problems like this sometimes creep up; they’re part of everyday living. In the moment, they seem terrible but in hindsight it’s just the way of things now.

The Hardest Day (GayleNation)

I sat in the way back of the Howard Theater that weirdly cold yet sunny day in Northwest, DC. I knew it wasn’t going to be easy to sit through that service so I sort of wanted to hide in the back. It was harder than I thought. Half-way through the service, as I watched friends, colleagues and even former bosses (and popular vote winner) give their eulogies, I had to walk out. I made it look like I was going to the bathroom but I really needed a few minutes of air. That was the hardest day of this last 12 months -- November 10, 2018, when we said goodbye to my friend Tyrone Gayle.

I remembered the night he called to tell me about his diagnosis. He knew what I’d been through and he asked for advice. I didn’t really have anything useful to say. We talked about whether it was a nightmare, I tried to make the case it was more like a bad dream.

I grieved the far-too-early passing a friend. I was sad to think he wouldn’t be part of my life and had only begun to reach his potential. But cancer had been the cause for this funeral – a young man taken at age 30.  Many people were devastated with the news of his passing; many were as close and some even closer to him than I was. It was a hard day for a lot of people.  I imagine my thoughts that day might have been a bit different than other peoples’.

I can’t believe that was six months ago. He was 8 years younger than I was when he died and he was diagnosed 3 years after I was. He had worked for me in 2013 when I was diagnosed and worked with me in 2016 when he was diagnosed. Whenever you have cancer and you hear about someone else with cancer, it’s difficult. When you hear about someone younger, it’s worse. When I heard about this – and when we lost him – it wasn’t so much a gut punch as it was a gutting.

Tyrone has passed away in late October of 2018 but they planned the memorial for after the midterm election. As the planners knew, Tyrone would never have let us take focus off the election to focus on him. A lot of tributes have been said and written more eloquently than I could about him – about his work with Tim Kaine, Hillary Clinton and Kamala Harris. He had an infectious optimism and an unrelenting drive. It was always weird up to look to someone who was more junior than you are, but I did.

After the service, many of the attendees got together at a local bar to continue the tribute. I saw friends from all walks of my life in Washington, but I ghosted on my plans for the rest of the night.

I sat in my hotel room that night and thought for a long time. Some thoughts were the normal ones -- how he’d be missed and what a void he’d left. But then, in my situation, the mind wanders to weird places. You start asking questions like “Why him and not me?” You think about what the differences could have been – He was younger. Did I get better treatment? Was my disease less severe? Why him and not me? You realize there isn’t a reason, that it’s fairly random. And you feel thankful and lucky because the lot didn’t fall on you. But you realize you shouldn’t think like that about the dear friend you just lost, so you push that thought as hard as you can out of your mind. But sometimes it creeps back in and you feel guilty when it does.

In the end of that night, though, I went to bed with a weird feeling. It was a feeling of jealousy – a weird kind of jealousy. If a memorial service is a tribute to how you lived and who you touched, Tyrone’s was filled with more than 750 people -- people whom he admired and people who admired him. I started wondering what mine would be like. There was no way I could match him. Anyone with cancer who tells you they don’t think about their own mortality is lying through their teeth.

Where Am I Now?

This Tuesday, May 21st, is 6 years since I was diagnosed. This Friday, May 24th, I’ll hop downtown and get my latest treatment. We know the cancer is still in me; that hasn’t changed. But, generally speaking, we have it under control. Sometimes we have to deal with an issue here or there but it’s not creating life threatening problems.

I’ve been on the same drug trial since last year. I still go down to Sloan Kettering every 3 weeks for a 30-minute drug treatment. Two hours of work from the same hidden corner of the doctor’s office while they get the drug ready. I know all the nurses who have the Friday shift and they know me. Some of them even know the best places in my arms to start an IV line. The treatment doesn’t have any particularly problematic side effects. So, I’m not healthy but I’m not currently sick. It’s really more like a chronic condition.

For so long, cancer has been either something you’re cured of or something that kills you. More and more people like me are just living with it. Interferes with life, there are ups and downs, sometimes you need an extra treatment, or you ruin a perfectly nice flannel shirt. But, you live with it and you live your life.

At the bar after Tyrone’s funeral, I ran into his wife Beth. I had seen her throughout the day but had been avoiding her cause I didn’t think I could hold it together. Spoiler alert, I didn’t hold it together.

As we talked, she told me something that I truthfully already knew. She told me if I didn’t keep fighting to keep myself healthy and keep fighting to do what I wanted to be doing, that Tyrone would have kicked my ass.

p.s. If you have interest, learn more about the memorial scholarship fund in Tyrone’s memory and make a contribution. 

[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.

[jessefferguson]

I didn’t look like me any more...

It was an early morning in the first weeks of April, as I waded through the long, snake-like line at La Guardia airport to catch a flight down to Houston, Texas. This ritual trip to Houston to see the doctors at MD Anderson had become pretty standard over the last 3 years. As I’ve written about before, it would take about 36 hours for them to scan me and check to make sure the disease I fought in 2013 hadn’t returned.

This trip was a little different, though. About a month earlier I started getting concerned about the swelling in my face. You see, for over 2 years I’ve been fighting a side effect of my cancer treatment known as lymphedema. It creates swelling because of the surgeries and because of the things they removed to beat the disease. But, in spring of 2016, the swelling got a lot worse. By the time I was waiting for the plane to Houston, it had gotten hard to see because my eyes were nearly swollen shut. I was occasionally using my hand to keep them open.

But, like my breathing before, things can creep up on you and I don’t think I realized how bad it had gotten until I was in that airport security line. As I got to the front of the line, I gave my driver’s license and ticket to the TSA agent. But there was a problem: I didn’t look like me anymore. The agent wasn’t trying to be offensive or difficult – she was just doing her job. But I no longer looked like the picture on my license. My face, lips, cheeks and eyes were so swollen that she wasn’t comfortable signing off on the idea that the picture on my identification was the person standing in front of her. That’s when it hit me that things had started to really change.

I got through that security line with the help of a senior agent signing off and did my regular trip to Houston. But in the back of my mind I knew everything wasn’t right. I was back at home in New York on the very early morning of April 7th when the doctors from Houston called while I was still in bed. They confirmed what I already assumed – the cancer was back.  

I did what I had done before with this disease: I sobbed a little in bed. I called my parents and told them. I gave myself 15 minutes for introspection and deep thinking. Then I opened up my laptop and went back to work.

WORKING IT OFF

Yes, I used to provide more pretty regular updates on my health.

I haven’t been good about that recently. And this time, I really didn’t want to.  Previously, I provided those regular updates partially to keep everyone informed, partially because it was therapeutic to write it, and partially because the support network of friends and family helped me through it. This time, I didn’t want too many of the people I work with to know what was going on. Why? Because I want to keep doing the work I am doing.

By Election Day, I will have been on this presidential campaign for 650 days. While I’m obviously ready for it to be over, being part of it has been one of the greatest honors and privileges of my life. First, and foremost, that’s because of who I get to work for and what I believe is a stake in this election. I’m not going to get partisan while talking about my health, but I think it’s safe to say that this election isn’t just the same old thing. And I believe the stakes here are higher than anything I’ve ever seen – or hopefully will ever see.

Secondly, this is something I’ve wanted to do since I was a kid. I’m not sure exactly when I got the bug to do this. Maybe it was when I had a Dukakis bumper sticker at age 8. (Though that could have just been because I thought his name sounded funny). Maybe it was in the 1990s when I was leading high school debates on behalf of Republican candidates. (Yep, I was a young Republican.) I figure it’s fitting to work for a candidate who began as a Goldwater girl. Maybe it came from my die-hard Rockefeller Republican grandfather, who once had Joseph McCarthy on the witness stand in a libel case – and won. Maybe it was in college as I got more and more active in advocacy for higher education and in politics more generally. Or maybe I should just admit it was cemented watching Martin Sheen play Jed Bartlett. Who knows?

But I’ve wanted to do this for a long time, now I have the chance, and damnit, the disease that has plagued me for 3 years isn’t going to (entirely) stop me.

WORKING IN HIDING

For the last 6 months or so, I’ve been doing what I can – still part of the team, writing, pitching, and spinning, even sharing an occasional bad joke. Those are all part of my job description. That said, I’ve been doing it via email and conference call as I work from home. At home it’s just easier to deal with the swelling in my face and the chemo I’ve been undergoing since the summer. I went through chemo once before so I know what to expect: The hair is gone. The stamina is down a bit. And the 5 days after each chemo round can be a bit tough. I recover and then they do it to me again.

Every three weeks, I head over to the Sloan-Kettering team in Brooklyn and they set me up. In a nice private room, I sit for about 6 hours while the IV drips toxic chemicals into me again. I’ve gotten pretty good at telling them where to insert the IV so it still allows me to type. And I’ve been able to get quite a bit of work done over those hours each time; it’s really amazing what you can do with a computer and a cell phone head set. It was awkward that time when I was hosting a call with reporters and the IV pump started to beep in the background, but I covered it up pretty well. The nurses and technicians probably know more about Hillary Clinton’s campaign for President than they should after listening to me on the phone – but hopefully they won’t leak! Fortunately the Russian hackers targeting our campaign never thought to bug a chemo infusion center.

The chemo has been manageable – can’t say it’s fun. The first round back in mid-June hit me hard – so I spent a week in the hospital. That was the week or so after Hillary Clinton had clinched the nomination so I camped out at the hospital (even took over the visitor waiting room occasionally) to do my part where I could as we started a bigger focus on the fall. Since then, though, the Chemo hasn’t come with many major problems.

Colleagues I work with often do know what has been going on – largely because I haven’t been in the office – even if they don’t know the details. They have all been nothing short of amazing: Supportive when I needed it, but otherwise letting me do the work that I want to do. I think they know how I abhor special treatment and they’ve kept it in check.

When people come to visit HQ, I’ve just been “unavailable” to see them. When people ask what’s going on around the office, I’ve become adept at changing the topic. There are millions of people throughout our country who hide something they’re going through from their colleagues, and for the last few months I’ve had the experience of being one of them.

Now there can be some upsides for me in these last few months. First, and most importantly, less meetings. I abhor meetings. And meetings drive big organizations - especially big political organizations. Second, I join meetings via a conference call. Some have thought this is a disadvantage because I might miss something. Sure. But the upside is when i roll my eyes at what someone says, no one knows. Or, if I’m compelled to just laugh out loud, it’s my secret (thanks mute button!). Or, most often, if I don’t pay attention, it says between me and the soap opera I’m watching. Third, and most importantly, no one really knows what I did all day and what I’m responsible for. Something great happened, maybe I did it, maybe I didn’t. Something terrible, could be me. Could not be. It’s all a mystery. I’ll be honest, I’m somewhat enjoying that.

The truth is, I did my work from home without really talking about what was going on because I really didn’t want my work to change, because the daily difficulties are much easier to manage in an apartment, and surely cause I worry that if everyone knew the details, I would get more sympathy than substance.

Yet as much as I’ve done my small part these 6 months, it’s not the same. There is something very different about doing this from the remote confines of my apartment compared to being with the team, crammed together in a smelly, sleepless, germ infested headquarters. There’s a difference between making a big trip to the battleground states on the campaign plane and making a big trip of walking across the street to the diner for dinner.  

Most of the time I hasn’t really phased me, but does hit me occasionally. The big moments have been the hardest: The convention that I wanted to be in Philadelphia for, the debate nights, or even the night Hillary clinched the nomination. Being part of putting those together has been great, but not being present hasn’t been easy.

In the late summer, when we hadn’t made much progress medically and I was in a bit of a funk, it turned out Secretary Clinton was coming to the office. It’s a rare occurrence; after all, she doesn’t need to convince us to vote for her and her time is far better spent on the road. I was resistant to going to the office --  I didn’t want to see everyone, or more so have everyone see me. But I was told she wanted to say hello and see how I was doing.  So on her way out of the office, as she headed back to her car, I met her in the parking garage. She worked it out to see me in the more private setting just so she could ask how I was doing and I could say hello without worry. It wasn’t a long conversation and it didn’t need to be, but it reminded me of how important it is to believe in what you do and why you’re doing it.

Another powerful moment happened this summer and put an extra spring in my step, when Secretary Clinton picked Senator Kaine for VP. Now, the nation has grown to know him over the last few months and, I hope, will know him even more over the years to come. But I first met Senator Tim Kaine when he was still City Councilmen Tim Kaine in my hometown of Richmond. Lots of politicians end up doing the right things but Tim Kaine is always doing them for the right reasons. I was lucky that he stepped forward to back a nonprofit venture I helped start almost 15 years ago at a time when he had no real reason to trust us. And, when I first got sick, not only did Senator Kaine call me to check in, but he called my dad too. That’s just who he is. Those are the type of things it’s worth working for. I had been personally pulling for him to get picked the whole time though I hadn’t made that preference known to anyone internally and, to be clear, I wasn’t going to be involved in the actual decision. Not my role. But it was a real short in the arm (not a real shot!) when he was picked.

WHERE TO GO FROM HERE, (MEDICALLY)

In early September, I noticed that the swelling which had indicated a recurrence of the disease in April wasn’t the only problem. I was now noticing some bumps and inflammation in my left chest wall and under my arm. This time, I didn’t tell my parents at first either – they’ve been through more than their fair share of all this. I told the doctor and she set me up with a scan and a quick biopsy. While the scan showed nothing, the biopsy was pretty clear that the cancer had spread to my chest. I called and told my folks and we changed around the chemo regimen to include some stronger drugs.

The good news is that those stronger drugs seem to be working. The bumps in the chest wall are almost all gone, so we seem to be reversing the progress of the disease. That doesn’t mean it’s gone; far from it. But at least we’re making progress and stopping things from getting worse. While we don’t have a “cure”, we’re at least stopping its forward momentum.

The medical challenge for me is on two fronts. First, what I have is rare. And rare is an understatement; all head and neck cancers are rare. Mine is so rare, it’s as rare as having a women President. So, second, while we’re trying new drugs and looking at new trials, the doctors can’t tell me for sure what we should do or what will work. Right now, we have the disease under control, but far from beat. So we’ll see.

But, as we close in on the election in just a few days, I figured my friends and family should get an update; you should know what’s going on. People have been too supportive of me throughout this whole saga for me to keep everyone in the dark. I hope to see some friends over the next few days and maybe this way I won’t have to rehash everything. Most importantly, though, I wanted to be really clear about the amazing ride I’ve had for the last 2 years – even with my health issues and no matter what the outcome of the election. It’s one thing to say that once the election is over, but I thought it was important that my friends and family knew it before.

Life is full of ups and downs for everyone. It’s trite but true to say you never know what tomorrow brings. The one thing I’ve learned through all of this is that tougher days are made much easier if you have people who support you and if you able to do what you love to do.  If you go to bed at night and wake up in the morning thinking about your work, then you’re lucky. It helps you get through the darker days. And, in this way, I’m really very lucky.

[jessefferguson]

Good News: The Guillotine Didn't Fall, Again

A Good Report

The last time I flew to Houston, about three months ago, I couldn’t breathe. So I headed to La Guardia for this flight with a few differences. First, and foremost, I had a hole in my head. Or rather, a tube in my neck.  And this time I could breath.

It was time for the regular ritual of going down to MD Anderson in Houston, where I was treated in 2013, to get scanned and make sure the cancer hasn’t returned. Each time I go, I’m convinced that they’ll have bad news and tell me it’s back. But this time, like the last time, the doctors tell me it’s not. I’m still cancer free with a clean report from the scans. Good news.

---

I arrive at the Diagnostic Imaging Center for my CT scan and check in. The waiting room is filled with people and my scans are scheduled to start at 6pm. They run scanning at MD Anderson until 11pm because they have so many patients and they’re running behind, of course, so I wait. When they finally call me back, first come the obligatory questions about how I’m doing and then the IV. Unfortunately, this time I had a trainee trying to start it and she missed. That’s never fun. I don’t like getting stuck once – I sure don’t want it twice. But then came an experienced nurse who got it done in a flash.

I go in for the scan and it’s on the same machine that’s been scanning me since May of 2013. It’s like we’re old friends by now. The scan takes 20 minutes and I’m out by 730p.m. Then time to wait. Every little bit of waiting takes forever; you’re very aware of the fact that the answer is sitting in that computer or in some folder, but you don’t know it yet.

My appointment with the doctor is scheduled for noon the next day. And sure enough, the doctor is late. I don’t talk to him till almost 2:30pm. It’s been nearly 24 hours of waiting since I took the scans and 3 months since the last test. The doctor comes with some printouts in his hand.

The good news is that they’ve learned what to say first --- and the doctor makes clear that my scan is all clear. The print outs say “No evidence of metastatic disease.” It’s a phrase you grow to really like. So I’m on my way back to New York that night.

I’m still dealing with side effects from the surgery – in swelling and other changes – and the new reality of having the tracheotomy.  It’s a lot to deal with. But it’s still good news that another 3 months have passed and the shoe didn’t drop – still cancer free.

And I’m back to work pretty much full-tilt. It’s good to be back. I bore easily.

---

One brief note to say thank you to friends, family, colleagues and even competitors for the tremendous support and enthusiasm I heard from folks a few weeks ago when I talked about having to get this Tracheotomy. It helped keep fuel in the gas tank and I thank everyone from the bottom of my heart for it.

[jessefferguson]

A hole in the head...

Sometimes people tell me I need to stop and take a breath. Last Sunday night that took on a new meaning.

LIFE UPDATE First, it’s been a while since I’ve written on this blog. Things have been pretty solid lately. My surgery in February was pretty easy – for major surgery – and I was back home within a week. They got one last lymphnode out that had cancer (and the gland it was in) and sent me on my way -- no radiation, no Chemo. Since February, I’ve been scanned in June and November and given the all clear – no new cancer.

At the same time, lots in life has changed. In fact, I got the first call about my interest in a new job while I was in Houston in February learning I needed that third surgery (see previous blog post). And sure enough, 10 days after that surgery, I had relocated from Washington, DC to New York City to start with the nascent campaign of Hillary Clinton for President. Anyone who knows me, knows I’ve thought about having a role in a Presidential campaign like this all my life and I couldn’t be more honored to be on Hillary Clinton’s team.  But I’ll leave the politics to twitter (@JesseFFerguson) and keep the focus here on me and health updates.   Leaving DC wasn’t easy – that’s where all my friends were. Many of those friends got me through the 6 months fighting cancer. And it wasn’t easy going further from my parents either, especially with the health issues so recently in the rearview mirror. But I couldn’t pass up the chance to be on the ground floor of this campaign and I’m glad I did it. So I moved to Brooklyn, NY, and been working in Clinton HQ. It’s been an exciting 6 months at work.

SUMMER TILL NOW This summer, I started to notice myself a little bit short of breath. The doctors gave me a few things to try but nothing major. Then, in August, I took a flight to Houston for my regular checkup.  When i walked out of the plane and into the terminal, I could hardly breathe. I dropped my luggage several times but tried to keep walking. I got to the middle of the concourse and had to stop – standing up against a ticket counter for 20 minutes – and trying to regain my breath.

On that same trip to Houston when I had trouble with my breathing, they also gave me great news that my scans were all clear again. No cancer. A lot of this blog post is some tough news for me so I don’t want to ignore how great this is: I’m still cancer free.

But, they gave me some tough news too. My airway was starting to close up a bit from all the swelling caused by three surgeries. That’s why I was having trouble breathing. At first they just made passing reference to a tracheotomy while talking about other medical remedies. Somewhere, though, I knew the real recommendation was going to include it. Sure enough, on my final day in Houston, I met with my lead doctor. This is the same doctor who 2+ years earlier had operated on me twice and led the team that saved my life. He told me his recommendation was to get a tracheotomy tube in my neck because he couldn’t be sure how long my airway would stay open.

Gulp. It might have been hardest meeting with a doctor I’ve had since that very first in May of 2013 when they told me I had cancer. The idea of a tube in my throat? Are you kidding? Doesn’t that mean I can’t really talk? How can I do my job, work, and live? All these thoughts running through my mind.

I needed some time. The doctor gave me the appropriate cautionary notes – he couldn’t guarantee that taking some time wouldn’t be fatal – but I had to try. I left Houston and came home. I started trying things – new air pumps in my bedroom, acupuncture, therapeutic message, etc. I gave up coffee and booze because they can irritate your airway. I thought I’d try anything to avoid a tracheotomy.

But things kept getting worse. I couldn’t really sleep at nights any more. My body wouldn’t go to sleep b/c I wasn’t getting enough air when I breathe in. I could hear a squeaking noise from my throat where my body was trying to get enough air – and failing – every day. The problems were mounting up. I was falling asleep at my desk at work b/c I would go the whole night without a wink of sleep. And I would wander the streets of Brooklyn with insomnia at night. I kept most of it to myself until I decided what to do.

AND THEN But then the decision was forced on me. Two Sundays ago, I was at home in the late afternoon and my airway was again getting worse. I called a few friends and chatted with them – but I could tell that I wasn’t tracking information well – not enough air. I went to talk to one friend while taking a walk and I think I passed out for a moment because I fell down on the street. That was the sign I’d pushed avoiding a tracheotomy – time had come. My girlfriend and I called an Uber driver and had them take me to Memorial Sloan Kettering in New York. She stayed by my side all night. While it wasn’t MD Anderson where I’d been treated at all along – that’s in Houston – Sloan Kettering is the other “Best” Cancer Hospital in the world so I felt pretty comfortable there. And I had a doctor there. So I checked in to the E.R. and they started looking me over. They looked concerned and really thought my airway was collapsing. They put me on a few medications to try to keep things stable.  Around 3:00 a.m. that morning, things got even worse. I started having real trouble breathing. They rushed into the room, gave me some stop gap medicine, and prepared for surgery. I called my folks and they were getting on a Monday morning flight up to New York. At around 6 a.m., I was wheeled in to the OR.

Now, I don’t remember what happened next. My last memory is complaining that I had to go to the bathroom while lying on the operating table getting tied down. I woke up in the Intensive Care Unit at about 4pm Monday afternoon. The surgery went perfectly. I wasn’t easy surgery because of all the others I’d had previously – but the doctor was one of the best – and it went exactly according to plan.Despite trying to avoid it, I now had a tube in my throat to help me breath. The tube comes out of my throat around my adam’s apple, bypassing the swollen upper part of my throat and getting air right into my windpipe and lungs. Basically, I no longer have to breathe through my mouth/nose because getting there is too swollen.

As much as I didn’t want to do this, there is a pretty big upside: I can breathe again, and in a way I haven’t in months. And, you know what, until you lose your ability to breath you don’t realize how much you miss it. I’m sleeping through the night. I’m more focused. And generally in a better place. 

I was in the hospital for about a week letting it heal while they taught me how to clean and maintain it, how to suction things out of it, and what to do if I have a problem. There are lots of rules and lots of maintenance. It’s a bit of pain but all understandable.

WHAT’S NEXT Now I’m home on recovery. It will be another week or two before I can go back to work. But when I do, something will be different – I’ll be breathing through a tube in my neck. The good news is that tracheotomies today don’t mean you lose your ability to speak – at all. I can talk. And talk fine. In fact, people say my voice is stronger now than it’s been in a few months because I’m getting more air through my airway.

But there are downsides. First, when people look at me, they can’t help but notice this. It’s not something – like the cancer surgeries - that I can hide. And second, I’ve lost the ability to do one of my favorite things – swim. Sure, I can wade into the water a bit – up to my chest. But I can’t put my head below water any more – not with this. I can’t swim laps and jump in. For as long as I can remember, swimming has been a refuge for me. Since I was a kid, mom told me I was a water rat. It’s always been that way. I used to go to the family lake house and just float on my back. Now that’s gone.

So how long will I have to keep this? It depends on the swelling in my windpipe, so no one knows. It could be 6 months. It could be a year. It could be 10 years. If the airway gets stronger and the swelling goes down enough, then we can do the surgery to take it out. Until then, this is how I breathe. This is the new, new, new normal for me.

As I’ve told readers of this blog before, I’m a communications person – I think about how to sum things up. Family and friends have asked how I’m doing with this. My summary has been – “I’ve been better, but I’ve been worse.” And, that’s the truth. As risky was, I’m glad I took the time to try other options before doing this – otherwise I’d be sitting here wondering if it was necessary. But now I have no doubt.

Now, there is one more downside to the tracheotomy that I realized while talking to a good friend the other day. No matter how bad things get now, I’ve lost the ability to respond to a problem by saying “I need that like a need a hole in my head” …. because now I  have one.

[jessefferguson]

Here We Go Again

It’s been 20 months – nearly two years – since I was diagnosed with Cancer. It’s been 13 months since my second surgery.  That one left me able to return home and work full time.

For the year since my big final surgery, lots of people would ask me how my health was. I had a pretty standard answer – “All clear for now, which is great. And if it comes back, I’ll fight it again.” That hasn’t been by accident – it’s been how I think about it. I needed to expect it could come back.  It was a rare and aggressive form to start – more so than I let people believe at the time – so I always knew there was a decent chance I’d have to go through something again.

And, it turns out, I do.

Two Weeks Ago

I came down to Houston for tests on Monday (2/2) and Tuesday (2/3) as part of my regularly scheduled checkup visits. First I got the result of a PET scan that showed “something lit up.” That could have been nothing much – just a head cold. But it was in a weird spot – the top of my parotid (salivary) gland on the right side of my face. In case you don’t remember, the previous big tumor was in the parotid gland on my left side. We did a CT scan too and a “hot” lymph node showed up on it, but we weren’t sure what it was. Doctors hoped it was small and might not be anything. I was starting to get worried but was doing my best to pretend I wasn’t.

I was lying in a hospital bed, bandages on my arms from two days of blood tests and IVs. It wasn’t anything new to me after what I went through in 2013, but it’s never the most pleasant. And, to top it off, I had an icepack up against my neck because they had just used very thin needles to take a biopsy of the lymph node on my right side. Ugh, another biopsy. They used a needle to take a few cells out of the right side so they could examine them. It was the same type of test I had 20 months ago when I was first diagnosed. 

It was the second longest 30 minutes of my life. The longest had been the hour waiting for a doctor at George Washington Hospital in D.C.  when I was first diagnosed. It felt like that all over again.  Was I  right back where I started?

The radiologist came in and told me what I had feared and come to expect: the lymph node was positive for the same kind of cancer that I had rid myself of 1 year ago. They found that one single lymph node in my right parotid gland does have disease in it.

My heart sank. I was pretty convinced this was what I was going to hear – but that didn’t make it any easier. What does make it easier is how much smaller, much less significant, much less dangerous, and much less hard to treat this is than what I was diagnosed with in May of 2013.

That said, I still choked back a few tears and packed up my stuff to head to back to the hotel, where I  did the same thing I had done 18 months earlier when first diagnosed: ..some work. I made a call to recommend some people for staff and edited some memos.

I’m angry and pissed about it, for sure, but not really surprised.  In the end, I’m just as confident that I will beat it this time as I did last time and this one is a lot easier.

Self-Set Expectations

As you may have read in my previous posts, each time I’ve gone back for my regular check-in at MD Anderson to test for recurrence of the disease, I’ve been nervous it was going to return. I knew this was a very aggressive cancer when it started – frankly some doctors never thought it was really treatable – so I’ve always held down my expectations for how things would go.

I’ve been amazed that it’s been a year since the surgery and the last 12 months have been pretty awesome. As tough as 2013 had been is how good 2014 was – I got to enjoy time with friends and family and got to do what I wanted to do professionally. 

This week I’ll go back in for another surgery to remove the parotid gland on my right side. It’s smaller than what I had to deal with in the past – and not going to force me to re-locate to Houston again. But, it’s still a big surgery – with risks – and some treatment afterward. We caught it real early – way earlier than the first time – but we’re going to make sure it’s not spreading anywhere else. So it means another procedure.

I continue to be lucky to have some of the best doctors and surgeons in the world. They’re talented, experienced and just a little bit arrogant – perfect to box with God one more time.

One of the big difference from last time is I know what to expect. I know what the surgery will be like, what I’ll feel like when I wake up, what the hospital will be like, the drains, the recovery, etc. It’s a LOT less scary when the fear is gone – almost like “the only thing to fear is fear itself” (FDR might have been onto something with that).

The New Normal

I’m gonna gear up and fight it again – and I’ll win – but my dreams of cancer being “a thing of the past” for me are shot. That’s never gonna happen. The thought of it’s going to be with me. It’s part of who I am and it’s part of what I do. Some people fight alcoholism or deal with PTSD or other mental issues. Lots of people have challenges they face on a day-to-day basis. I’m not unique in that and I better get used to it.

Here we go again.

[jessefferguson]

Smith's Law

This will be a shorter-than-usual update from me but I wanted to share the latest news and updates on me and my health.

First, we had an election. It wasn’t great. It could have been worse. I’m proud of the work we did – really think we made a difference – but I certainly would have liked a better outcome overall.

More importantly, I’m on a plane back from MD Anderson right now. I scheduled my regular follow up visit for right after the election. I got here Sunday night, had tests on Monday and results on Tuesday. The news was all good. Still healthy. No new disease. I’m now 12 months since radiation ended and 9 months since surgery. All clear. For now.

It was weird walking around the halls of MD Anderson. Felt almost nostalgic. Sort of like when you visit your Alma Matter and you run into old teachers (doctors) and administrators (assistants). You see faces in the hallways that look vaguely comforting but you don’t really remember why. It’s good to see them but you still feel a bit like you don’t belong there. It was your home at one point but isn’t anymore.

Anyway, they did the CT scan and gave me the results. For those that had never had a CT, they lay you down on a table, shove you in a machine, and tell you to breathe at the right times. It takes like 20 minutes and you can hear the machine moving stuff around – presumably taking pictures. But, being a Cancer survivor and having a regular CT is a bit like being left on a guillotine – you’re definitely ok but you’re always worried that the blade might drop at some point.

That’s sort of my best description of being a Cancer survivor who is approaching his or her regular scans to make sure it’s not back. Each time, I hope I won’t be worried about what the pictures find and, each time, I always am worried. In fact, this time I was more worried than I’ve been in the past. I walked out of the room for the CT scan and stared at the technician hoping I’d see some indication in her eyes – a smile or a frown – that would tell me if she’d seen good or bad news. It’s ridiculous because the results would come the next day – but I still was searching for some indication.

Most of the time I’m an optimist. Sometimes I’m a pessimist – I can be a believer in Murphy’s law. But, when it comes to the regular scan to make sure Cancer isn’t back, I’m a bit of a believer in Smith’s law. Do you know Smith’s law? He said the Murphy was an optimist.

Otherwise, life is ok. Recovering from the election but really couldn’t be more thrilled to be part of it. I’ll leave that for somewhere other than this blog.

I’ve been actively involved in politics for about 12 years now in different ways. Each election is important and special but this one did mean something different to me. I know I got a little closer than I would have liked to not being able to make it back and take part in it.

All of it gives you a new perspective to the phrase I’ve said countless times over countless years -- "I survived another election."

[jessefferguson]

It’s that time again…6 month check

I can barely believe it’s been 3 months since my last post.  It’s been 6 months since my final surgery. 9 months since I finished radiation. And 14 months since I was diagnosed.

It’s also been 35 years since the first Walkman was sold on July 1st, 1979. Just saying; time flies.

So I just had a couple tests down at MD Anderson. The second of the two tests was an ultra-sound of my head/neck. This was the same type of test that they first used at GW back in May of 2013 to find out I had a problem. It was a bit eerie having that same device – the one that I think of being for pregnant women – used to scan me, again.

The topline news: Another 3 months have gone by and the check-up is all clear. I came down to Houston for my scans and they found nothing new had grown/returned since the surgery. This is the second check-up I’ve had with a clean bill of health since my treatment ended in January. Doesn’t mean it won’t ever return, but so far so good. And it means I’m clear through Election Day 2014 --- so back to work.

Work has really started to pick up. The team is strong and I’m getting to dig into it just how I had hoped. I’m starting to drive my consulting teams and staff a bit nuts, but that I’ll take that as an indication I’m doing my job right. As I told them all when I was hired, I’m fairly confident I will fuck something up pretty quick. I just hope people tell me. It’s like having your fly down: You just want someone to tell you.

I’m lucky to do what I do. I knew this is what I wanted, but I harbored some doubt it would happen during the darker parts of last year.  I like having it all behind me – but it’s always there in the rearview mirror.

And so each time I come down here for tests, I tell myself that I’m going to be fine and there is nothing to worry about. When friends ask, I tell them I’m not worried. When I get here, I keep telling myself that -- up until the point where it clicks in my mind that the news could be bad. I hide it well but gulp.

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A few weeks ago, though, was pretty tough.

Throughout the time I was sick, my friend Mame Reiley was fighting her battle with cancer too. She had started battling about 3 years before I got sick.

Mame was a teacher and a mentor - teaching me how to fight for ideals in politics without giving up your soul or principles. How to protect your team while forcing them to get better and work harder. It would take me day and night to list the people in politics who she's had a hand in shaping, from Senators and Governors to staff assistants and drivers.

During my treatment, Mame would call to check in. We didn't really talk about cancer. She had it. I had it. We talked about politics and life. That’s how Mame was. She helped me stay grounded, being me through all of it.

I knew from mutual friends that her battle wasn't going well. Sadly, she lost the fight last month.

We never really talked about how it was going - I couldn't bring myself to ask her. As hard as my battle was, I was improving. Her funeral was tough for a lot of people – many who knew her better than I did – but it hit home for me in weird ways.

Mame is the first friend or family that I've lost to cancer since I started fighting it myself. While much of my life isn't that different from before I was sick - but this part is. It's different having a small taste of what she was going through. It’s different sitting through a funeral of a friend and mentor who you’ll deeply miss, while also wondering, just a bit, if it could have been you.

The funeral was a who’s who of politics – former Governors, Senators, Members of Congress, political operatives, allies, and adversaries. After the funeral concluded, we had what some would call a wake in Mame’s honor -- but I would more appropriately call it a party.  When I got into the car and started driving back into DC, I started to cry. It was only the third time I had found myself crying in 18 months of this shit: The day I was diagnosed, the day results came back saying the cancer was dead, and now this drive.

I can't imagine how hard it had to be for Mame to call me knowing what she was going through, especially knowing hers wasn't going in the same direction mine was. But Mame always had that kind of courage. She knew I was pulling for her and I knew from every call that she was pulling for me.  I'll be honest: if the roles were reversed, I don't know if I could have done what she did.

The other day there was a story in the Washington Post with breaking news about Virginia Politics – a state Senator was resigning and switching power of the state Senate to Republicans. I did the same thing I’ve done for almost a decade - reached for my cell phone and started to pull up Mame’s number to commiserate. That's what I would do. This time, though, I realized what I was doing and didn't press the green button to connect.

---

I’m looking forward to my plane flight heading back to DC tonight. I do like night plane flights, especially into National Airport.

The feedback I continue to get for sharing this story is really amazing. Just the other day, I heard from the CEO of a PR firm about how he had been following along. Who knew? Sorry I don’t update more, but I’ve got a job to do! Thanks for reading.

[jessefferguson]

“The powerful play goes on, and you may contribute a verse”

Well now. Time flies when you’re having fun. Ok, that’s not always true, but time definitely flies when you’re not having chemo, radiation, and surgeries.

It’s been essentially 1 year since I started going to see doctors to figure out what was going on with swelling in my face. It’s been 11 months since I waited for an eternity in an un-airconditioned room for a diagnosis.

And, I’m writing this from Houston having returned for my first 3-month check-up after my final surgery in late January.

Today, I sat back in the same chair I sat in 10 months ago when I got to MD Anderson, and I took a deep breath. I had pretended not to be worried about it but I knew I was. I didn’t think anything bad would be reported but hell, who knows. I had gotten to the hospital the day before and they gave me the full scan of my head and neck. Now, my doctor was going to tell me what he saw.

He said … Scars are healing as they’re supposed to and first scans show no new disease. Clean bill of health for now.

For each of the doctors I saw, I think I tried to pretend like I wasn’t worried – cause I’m tough and all – though that was mostly bullshit. I’m pretty sure they knew that; it’s not their first rodeo.

Still many more check-ups to go before I pass 2 years and 5 years where reoccurrence rates drop significantly, but I’ll take it.

The New Old Normal

So what have I been doing? Getting back to normal, mostly. A long time ago, I wrote on here that the “new normal” for me was dealing with fighting Cancer – treatments, doctors, radiations, etc. Well, I’m getting back to the “old normal” with a few new twists. It’s been nice to get back.

People ask me how I’m doing and I have a pretty standard response these days: “living the dream. Avoiding the nightmare.” It works for me. Tells a pretty good story. Plus, it has a nice ring.

The folks at work who were so terrific during the 7 months I was getting treated have welcomed me back. They were fantastic while I was gone but everything still went on without me. It’s good to be back, but also a good reminder that “the powerful play goes on, and you may contribute a verse.” I’m glad to be back to writing my verse.

Couple updates on my life:

I moved. As you may remember, I closed my apartment in Alexandria when I opened one up in Houston. It didn’t seem to make sense to light money on fire by paying rent in Alexandria for a place I wasn’t using. I’ve moved into a new apartment in DC – near Eastern Market. It wasn’t easy to give up the Virginia residency – where my vote actually mattered – but it’s nice to have something new. The apartment is a renovated storefront and it’s just fun.

New job. During all my time being sick, I wasn’t really sure how much work I would get to do and what it would do to my career. Ultimately, that comes second to health – but it wasn’t a distant second for me. The good news is that they had enough faith in me to give me a new opportunity to run the Democratic Congressional Campaign Committee’s Independent Expenditure. To those in politics, you know that’s going to be a fun and exciting place to be for the next 7 months. My team is hired and we’re off the ground. To those not in politics, I apologize – in advance – for what I’m going to do to your television airwaves if you live in a competitive district.

The Big Thoughts

Lots of people asked what I thought of the piece the Washington Post did on my health “escapades.” I have the same reaction I do about a lot of the hoopla about what I went through. It was nice and heartwarming but, at the same time, they all give me too much credit. Honestly, for 7 months, my job was to lay there and not move too much. The doctors are the ones who do some amazing shit.

I’m not 100% recovered from the treatments and surgery – I might never be. I’ll always have some side effects and some things that have changed, but they’re all very manageable. Right now, I still deal with some swelling in places and my shoulders aren’t fully back to normal but it’s not debilitating in any way and I’ve gotten back to the gym in the last month, which has been a positive step. I still have to wear a big compression bandage at nights to try to decrease swelling and I’m still up at Georgetown once every three weeks for some treatments that are continuing until the summer to decrease the likelihood any of this comes back. Let me tell you, compression bandages at night make me quite the catch when I sleep.

It used to be that every conversation I’d have with a friend or colleague would start with a 15 minute discussion of health – they’d kindly ask how I was doing, what the latest was, etc. Now – after 3 months – it’s occasionally a passing question like “everything still ok?” I like this version better.

I’m not yet sure what I’m going to do with this blog going forward. I may do an occasional post  - like this one – to update friends and family. That said, I’ve got a day job and it doesn’t entail blogging every thought of my life. I save that for twitter (@JesseFFerguson).

Friends have wondered if all of this has changed me in some major way. I’m really not sure. I don’t think so, but I’ll admit to not exactly being in a reflective-deep-thoughts kind of phase. I don’t think I “saw my own mortality.”  For all that things were rare and got pretty bad during all of this, I never really thought I wouldn’t make it through. It was always a question of how long it would take and what winning would require of me. Nowadays it feels like something has been checked off the checklist, though I’m trying to be healthier and do those small things that can decrease the likelihood of fighting it again.

Then again, for all that I don’t think this affected my sense of mortality, less than 2 weeks ago I took my first flying lesson. It’s been on my bucket list for a long time. I told myself it was just a convenient time to do it and that’s why I had finally scheduled it, but I’m sure there is some deeper psychology going on there.

Meh, I’ll leave that to the shrinks to figure out…

[jessefferguson]

This One Was Fun To Write

In my last blog post from December, I got to tell my friends and family that the “Wicked Witch of the Left” was dead --- the tumor in the left side of my head/neck that we took out with surgery was 100% dead.

This past Monday (1/13) was my second surgery. It was smaller than the first one but still a hefty surgery to clean out any involvement on the right side of my head/neck. This evening I got the report back that 100% of the tumor in my right side – the Wicked Witch of the Right - is also officially dead.

So, for the first time since May of 2013, I don’t think there are any tumors or cancer cells in my body. I gotta admit, That’s kinda fun to write.

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Surgery #2 went well. It was easier than the first one – partially because it was smaller and partially because I knew what to expected. I got home for New Years between the last surgery and this one and I flew back to Houston this past Saturday – giving myself a day to settle in Houston before going for surgery.  With airlines the way they are these days, I wasn’t going to chance getting stuck in transit and missing my Monday morning surgery. I’ve had the worst travel karma during this whole process and it continued on this trip – as it took me an entire day to get to Houston because of airplane delays.

You may remember me writing that the first surgery back in December could have been 6 to 12 hours. Those who saw me afterwards could tell I have a pretty hefty scar from it. I am going to try to pull off the “you should see the other guy” routine when people ask me about the scar and see if it works. If nothing else I take solace in Keanu Reeves in the movie Replacements saying “chicks dig scars.” I’ve got that going for me.

This second surgery on Monday was smaller and I was less nervous for this one because of how well the last one went -- but certainly had nagging thoughts. The biggest concern was the assumption that  at some point things have to go wrong, right? I was an economist in college and am enough of a numbers guy to start wondering that. While having Cancer was obviously not good news, everything during  my treatment has generally gone well. I’ve gone from a pretty rough starting point to a good place now. But I definitely had to wonder if the odds just meant something had to go wrong with the second surgery by the law of averages. Well, it didn’t.

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Surgery wasn’t as early in the morning as the last one. The good part about that is that I didn’t have to wake up at 5:00 a.m. like last time; the bad part is that I couldn’t eat anything starting midnight the night before. That was rough.

The routine for surgery was basically the same. Get into the gown (which I still find both uncomfortable and uncomfortably revealing). Put on the special socks (to avoid blood clots). Answer the nurse’s questions: Have you fallen recently? Anything metal in your body? Any allergies?  Then answer the questions about who I am – my name – and what procedure I’m having done. They ask that one a lot. It’s both reassuring that they’re checking and discomforting that they’re unsure.  Then they came in with the sharpies and wrote on my neck --- YES on the right side and NO on the left side. I guess it’s a good double check.

In went the IV and away we went to the OR. I’ve been told I shouldn’t remember my time in the OR, but I do. They moved me to another bed. They were even talking about the Seahawks (go Russell Wilson!). After a little while they gave me oxygen over my mouth and out I went.

Next thing I knew was waking up in the recovery room. I wasn’t sure where I was for a bit but figured it out. I’m glad we didn’t do both surgeries at the same time – it would have been too much. As it is, I haven’t fully recovered from the first one and this one is making me a bit more sore.

I saw the doctor for just a minute after the surgery, but I couldn’t really process what he told me thanks to the pain medications – fortunately he already had talked to my parents and they filled me in later.

Bottom line from the doctor was that the surgery was successful and they got everything they wanted to get out of the neck and got clean lines on everything. I now have a nice long matching scar on my left side that matches my right. They almost touch.

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It was nice to get back to Richmond after the last surgery and up to DC around New Years. I got about 2 weeks worth of work in. New Years Eve was fun to see friends – some new and some old. It’s always a bit awkward when you can’t drink at New Years, though I might have been the only one that noticed or cared. I wasn’t sure how late I’d be up for being out – my battery still wasn’t at full steam. I made it to 12:03 a.m.

After the second surgery this week, they brought me up to a private room again on Monday night. I stayed over night and through the day on Tuesday. I saw the surgeon on Tuesday morning. He said I was recovering so that they could take out the drains and discharge me on Tuesday. The Doctor told me that hospitals are just not a good place to stay for a long time. The smart ass in me asked him why he spent so much time in them.

I’m going to be in Houston for another week to recover and get stitches out and then fly back to Richmond. I’ll be home for a while before I go to DC and back to work. There will continue to be some tests and some scans to make sure it doesn’t come back, but the treatment pieces of this seem to be over.

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None of this means that I’m Cancer free. I don’t think you can really say that until you’ve made it 5 years and nothing has come back. But it is sure a hell of a lot better than where I started.

There are lots of life lessons out of this whole thing and I’ll be reflecting for quite a while – maybe about 75 years. I know part of it was to have the support of your family and your friends – which I couldn’t have asked for more of. I know part of it was a supportive workplace – which I couldn’t have had any better. And I know part of it was to keep yourself in a good mental state – which, with me, is always highly debatable and in doubt..

I don’t know what I’m going to do with this blog yet, but I’ll definitely post again once I’m back in DC and into my routine. Thanks again, to everyone.

[jessefferguson]

Ding Dong The Witch Is Dead

On May 23, 2013, I was diagnosed with an advanced salivary duct adnocarconimoa that had spread in my neck. Six months later (on December 23, 2013) my surgeon called to say that the pathology report from my recent surgery came back and showed that the tumor they removed is dead.

This doesn’t mean it’s all over; I still have another surgery in early January to get the entire remaining tumor, but the news was pretty good. It means that the chemo/radiation was successful, the second surgery is much more manageable, and the long term prognosis is far better. The radiation was miserable enough; it’s a relief to know it worked. We’ve had lots of data points along this strange road over the last six months, but this one will stick with me. six months after I found out I had Cancer, I now know it is dead.

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Wednesday was the big surgery and it was successful – better than expected. For those that follow surgeries, this was a parotidectomy and a neck dissection. For those that don’t follow surgeries but do follow movies, have you ever seen the movie Face-Off with Nicholas Cage? They pulled back a bit of my skin and took out the parotid gland with the tumor and the lymph nodes in my neck.

After the surgery, the doctor said that “I made him work for it” because the case wasn’t easy. There was a lot of scar tissue in the area from radiation, but they got all the tumor out and, as mentioned above, it’s dead.

There are many things that they could have had to do during this surgery. The surgery could have been anywhere between 6 hours and 12 hours. Mine was 6. The biggest and most important thing beyond removing the tumor is preserving the nerve in the face . Given that I have a face for radio, that was particularly important to me.

That’s the nerve that runs out from your ear and breaks into 5 branches running to your eye, nose, lips, etc. Often times in order to take out cancer here, they have to harm or cut that nerve. They can try to fix it, but it’s never really the same. Those folks end up with a droop in their face or problems with speech. For me, they were able to save it with just a small 1cm graft. For all intents and purposes, I get to keep 100% movement on that side of my face. Phew. When I went through the what-if-theory-of-catastrophe before the surgery, having something that impacted my ability to speak  was really keeping me up at night. Thankfully, the surgeons were successful. I know I’ve said it before, but the folks here at MD Anderson are very good.

We will still have to do the much smaller surgery in mid-January to remove lymph nodes from the right side of my neck, but that doesn’t involved the gland work, reconstruction, etc. and is a much smaller piece of the puzzle. The surgeon didn’t want to do them at the same time; it would have been too much to recover from at once. The next surgery is a shorter stay  in the hospital and comparatively easy. I don’t want to underestimate it, because it’s still surgery, but compared to the rest of this nonsense that I’ve gone through over the last six months, this one is smaller and easier.

Let me outline the few days of surgery a bit for you.

Tuesday before the surgery was a somewhat surreal.. I showed up for a 7:30 a.m. appointment with the surgeon and we went through the whole procedure. He went through the recovery and what to expect and he presented the typical course of reaction and recovery. It didn’t sound pretty, but I was ready for it. He outlined the potential for plastic surgery work, nerve grafts, and other potential issues that they can’t know about until they get in there. I knew all of it in advance, but it definitely was a bit sobering to hear them outlined.

The biggest challenge with my particular case is that my cancer is rare. There aren’t many, if any, cases that match mine, so it’s hard to predict that will happen next.

For me, the most important news on Tuesday, though, was getting my biggest irrational fear answered. Despite going through needle after needle, chemo, radiation, and now surgery, the real thing that worried me was a catheter. I really didn’t want one. Something about waking up post-surgery with a catheter in me gave me the hee-bee-gee-bees. I know it’s utterly irrational for that to be a top concern, but it was. I talked with the doctor and confirmed if they used one, it would be removed before I woke up -- Big win for me.

Then came Tuesday night. I got back to the apartment, found out my surgery time, and packed up a bag. Then began the “Arrival of the Aunts.” Three different aunts – from three different parts of the family – showed up (one as a surprise) to help out in the following few days. In reality, they’re here as much to help my parents as me. My parents have been the primary support during this whole thing and the next few days weren’t going to be easy. The surgery could be as long as 12 hours and that’s a long time to sit in a waiting room alone. I get the easy part; I’ll be asleep!

It’s funny when people wish you good luck with surgery or express confidence that you’ll do a great job. I’m pretty sure I don’t do anything. I lay there. I sleep. Other people do some of the most technical work of anything in the country – and I hope they do well – but not much of it relies on me. It’s part of this process that’s entirely out of your hands.

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Somehow I got a decent night’s sleep Tuesday night and got up early Wednesday morning. I strolled to check-in at 6 a.m. and they checked my ID for the first time. I think they checked my ID bracelet no less than 20 times between that moment and when they put me under for surgery. I guess that’s a good thing -- I want them doing the right operation on the right person.

We started reviewing the paperwork and getting into the stylish hospital gown. Hospital gowns really leave nothing to the imagination, do they? The plastic surgeon came by and wrote the most important thing of the day --- he wrote on my arm and face in magic marker to make sure everyone knew which side we were operating on. Good precaution I guess. Then the doctors and others came through to verify all the last minute details. I kept giving the same response and we moved on.

Finally, in came in the anesthesiologist. In went the IV. And they started giving me “happy juice” which I think is just a relaxant. They covered me up and I was wheeled back into the operating room. In the operating room, there was a full team of people who descended on me. They all introduced themselves but I couldn’t recall any one of them if my life depended on it. I got moved to another bed. They hooked stuff up to my legs and put monitors on my chest. Then, they told me it was time for a little extra oxygen to help me breathe. I knew this trick. They put the oxygen on and that was that.

Next thing I remember was waking up in the post-operative ward with a nurse at my side who gave me a few ice chips to deal with dry mouth. I was somewhat confused as to how the procedure went. I was really groggy, but questions where racing through my mind – was it successful? Did they get it all? Did they have to damage the facial tissue and facial nerve? How bad?

The plan had been to remove some skin from my arms or legs to do reconstructive work on my face, but I saw no bandages in either my legs or my face. I wasn’t exactly sure what ended up happening. It  seemed like 15 minutes later, but it was probably 1 or 2 hours before I was ready to talk to people.

They let my parents come back. That’s when I knew things had gone pretty well. My folks explained to me that the doctor had gotten everything he wanted out of my left side with no real damage to the nerves and no need for hefty plastic surgery work.. They almost always have to do major plastic surgery – which makes recovery longer and harder – but didn’t have to for me. That’s either really great news (which I choose to believe) or just proof that I was so ugly to begin with there was nothing the best surgeons in the world could do about it.

I saw the surgeon briefly, though I couldn’t tell you what we talked about (blame the anesthesia). After a little while longer, they wheeled me up to my recovery room for the night. The trip to the room was the longest trip of my life. I’m not sure why, but I felt like we went on 7 elevators and down 15 hallways. It might have been the morphine talking.

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Then we started with recovery. I laid down in that room until later in the night on Wednesday and then had to go to the restroom for the first time. I was able to get up with only a little trouble. I wasn’t exactly easy on my feet but the sore side of my face/shoulder was made better by the pain meds. So I got up and even walked around a bit on the night after the surgery.. And I called my grandmother for a moment..

The next two days in the hospital are pretty boring. Eggs for breakfast, some other food for lunch and dinner. It was hospital food. Bleh. All with lots of interruptions to take my vital signs, breaks to give me pain meds and Antibiotics. All went along pretty smoothly.

The bed I was in felt a bit like a cruise ship. Every 10 minutes or so the bed moves around a bit to prevent you from getting bed sores. At the same time, I had machines strapped to my feet that messaged my ankles to avoid blood clots. Sometimes they two machines went off at the same time and I felt like I was on the ocean being rocked back and forth.

The nursing staff checked in every little bit and made sure I had the medication I needed. On the second day in the hospital, the PT nurse came in to teach me about exercises I can do to help my neck/shoulder heal and make sure I don’t lose range of motion. It wasn’t until the attractive PT Nurse wanted me to stand up, that I first realized I was still wearing just the hospital gown. I found a pair of shorts pretty quick.

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For the first three days they still had two drains in me. These are just little tubes running out of the area of the surgery and draining into bags that are just hanging off your body. They’re weird to have but not particularly uncomfortable. Each day the nurse comes and empties them. They make sure fluid doesn’t build up in the surgical area and become a problem.

On Friday morning, they pulled the drains out. That was a weird feeling. It didn’t hurt, but I could feel the tubing coming out from inside my face. I’m glad to be done with those.

That evening, I was discharged from the hospital and headed back to the apartment. Since then I’ve just been resting and recovering. I’m not doing too much, but each day I feel stronger and able to do more. I’m up, walking, talking, and been back online and working this week. I get the stitches out on Friday and the doctors will take another look then.

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As I mentioned at the top, I got the call from the doctor with the pathology report after the surgery. They had analyzed the entire tumor that was pulled out and, as mentioned above, it was dead. There’s been good news and bad news all along the way, but this was the first time I’ve felt really significant progress. I don’t always know what everything else means, but I get the idea that the tumor had been alive and growing and now it’s dead.

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While I work in domestic politics now, my academic background was in international relations. I’ve been looking at this fight against Cancer as a 6 month war against some cells in my own body (my own little non state actors – a terror cell perhaps). I got the news from my doctor tonight that the drone strikes were successful, the cells are dead, and we’d sent in the SEALS to clean it all up.

I still have one more surgery to go in January but I feel like I’m making progress. I don’t think about almost being “over” with this, though, because this disease will be with me forever. I can’t ignore it or forget about it. But, the one thing I know at this point is I think I can beat it.

[jessefferguson]

Done In The Microwave, Time for the Carving Station

This post is going to take some people by surprise – but I’ve started to find some good things in this whole saga of the last 6 months. Let me start off by being clear: this is finding the very slight silver lining in a dark cloud. But, you know what, it’s there. It just does a good job of hiding some days.

Those silver linings you find in this process make just a little bit of difference, but in that little bit is everything.

All that said, the silver lining will never outweigh the dark cloud. In other words, if anyone ever gives you the choice: would you like Cancer or not? Choose no. It’s just sound advice.

I’m feeling ok – still recovering from the radiation, but getting better. Most everything has healed.  My face is fully healed, I have all my energy back, etc. My throat is still sore and I’m told that will be with me for a while. But I did get some chocolate that I was able to eat and some other favorite foods, including a lot of Chinese food.

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After spending a few weeks in Richmond to recover from radiation and see some friends, I got back to DC just before Thanksgiving for the first time since September 1st, the longest time away since I headed to Houston in June. I got settled into an apartment and got back to work. Sure enough, the first day I was in the office (on a Friday), I was the last person to leave. I like the peace and quiet of an office after everyone leaves – it’s when I actually do work. I know, I’m not normal.

Thanksgiving was a good distraction. First, the weekend before Thanksgiving, I had a Thanksgiving dinner with some of my friends from college. Our traditional Friends Thanksgiving has been going on since I was a senior in College – it’s a lot of years.  The funny part about this dinner is that it started 11 years ago as a gimmick to make nice with potential volunteers for my buddy’s Student Body President campaign. This many years later, there we were to eat and see some longtime friends. Some of the players at the table have changed and others are the same. Some are married. Some have kids or have them on the way. Only thing I had that was new since last year was Cancer.

Whenever I see friends or colleagues for the first time during this process, they always say how great it is to see me. They genuinely mean it. I finally figured out my response a little bit ago, and now my retort is almost always that “it’s good to be seen.”

The rest of Thanksgiving was nice and very normal. My grandmother came up to visit and I saw her and my parents for a few days. We went to family friends’ for Thanksgiving Dinner. She used to host a huge crowd for Thanksgiving in a much bigger house. In recent years she’s downsized the House, but not downsized the guest list. So dinner is in a finished garage with a chandelier and folding tables w/ table cloths. It works.

The next three weeks back in DC were solid. I got back to the closest version of “normal life” that I’ve had since the day (May 23) I was diagnosed. I got back into a rhythm with friends and colleagues. It was good to be back. The hard part was the looming knowledge – ever-present in the back of my brain – that this was a temporary respite, not finality. It’s weird, but in a lot of ways going back to the office was a vacation – it was a therapeutic and relaxing break from 6 months of treatment and health-related tasks. I had been involved in work remotely (thanks to the internet) throughout this whole process, but there is something different about being at your desk.

I reached a “new normal” at work over the last few weeks. When I’m working, I usually have a lot of meetings – about every hour during the day. Folks would come in for a meeting and the conversation would almost always start with them awkwardly asking how I was doing. They all meant it well, but they weren’t sure if I was in the office because things were done, or things were progressing or what. I filled them in briefly and then we went into the substance of the meeting. Then we repeat with the next meeting.

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There are some upsides to going through all of this. It does put some things in perspective. I haven’t had some powerful, awe-inspiring, deeply religious epiphany or anything, but I have noticed some things during these last few weeks.

Certainly, I’ve reconnected with old friends. I’ve heard from former colleagues and people I worked with and even heard from friends of mine from high school. That’s been a trip. I haven’t kept in touch with many folks from HS over the years, but a bunch of them reached out in the last month or so. It’s been nice to reconnect and been a fun pick-me-up. They all sent cards and one of them included a gift. It was a mug that I had given out as the party favors at my Bar Mitzvah (20 years ago almost to the day). She had kept it all these years and sent it back as a pick-me-up.

It’s not just the support (though that’s key) from friends, it’s also some perspective that you get going through this. I got back to my desk at work and realized that life had continued on without me. I think I add value to what I do, but any crazy notions that you’re indispensable get pretty quickly dispelled. Life goes on. It’s a good reminder and important perspective, especially when you work in the most self-important town (DC) in the nation in the most self-important business (politics) in the nation.  (Though in all fairness, maybe we’re second to Hollywood.)

One other thing became crystal clear when I was back at work for the last 3 weeks: I’m not alone. The support from my colleagues at work has been unbelievable – from notes and packages to calls and good wishes. Even from the Members of our Democratic Caucus – many of whom reached out to share the stories of their own battles with Cancer. It’s helped to keep fuel in the tank through all of this.

I’ll be honest: this Friday, when I left my office to head back to Houston, was only the third time during this whole process that I got really sad. The first was when I was diagnosed and the second was the last week or so of radiation. And, now, the third was on the long drive from Washington to Richmond (my hometown) late Friday night. It’s a trip I’ve probably driven 100 times (at least) in the last 10 years but this time I couldn’t focus on listening to music or talking to folks on the phone. I was just thinking about how nice it was to have a “new normal” for a little while – and the hope to get back to that soon.

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So what’s next? Well, I started writing this on the airplane and I’m finishing in Houston. I flew back to my temporary home this weekend to get ready for tests and go for surgery. Gulp.  We’ve done the chemo and done the radiation to try and attack this thing, now it’s time to get it out of my body. The test results all looked good and the chemo/radiation had a big, successful, effect shrinking as much as 50 percent of the tumors. That said, I had a lot of it to start so 50% is only half-way home.

This surgery is scheduled for tomorrow. Weirdly, I’m not actually worried about it. The surgeons know what they’re doing and it’s not like I’ll be awake or know what is going on. As I mentioned in a previous blog item, I like it that my surgeons are very good and slightly arrogant. You should be arrogant when you box with God all day.

In all honesty, I’m not looking forward to the surgical recovery. The 3-5 days after the surgery where I’m uncomfortable and doped-up and pretty miserable. Not looking forward to that. I’ll have a lot of discomfort – so they tell me – and a pretty big incision to heal. I’ll even have drains for a few days. Won’t be pleasant but none of this is supposed to be.

Today was the day of signing consent forms for surgery tomorrow. I signed forms that say any number of terrible, horrible things can happen knowing full well that they won’t actually happy. I get why the hospitals have to do it this way (for insurance reasons) but part of me would prefer a blank that just said “Bad shit can happen but we don’t expect it to, sign here:”

Going into the surgery, my solace comes from the fact that surgery is different from radiation. In radiation, every single day for 33 days they’re making the situation harder on you. For surgery, it’s one day and then you can start to heal.  I am going to like that part of this.

So, that’s this week. That’s what’s next. I’ve gone out of the frying pan and into the microwave (from Chemo to Radiation) and now it’s time to see to head to the Carving Station.

[jessefferguson]

Making Progress Isn’t Fun

It’s been way to long since I wrote an update here. I imagine some people think that silence means bad news, so I’m sorry about that. For a while I just wasn’t sure what to write and then I wasn’t up to writing it. Oh well. I’m back on the horse now.

I was back in Richmond for 3 weeks recovering from the radiation treatments. It’s nice to be back and out of Houston.  The recovery is slow so I wasn't doing much other than working from bed, but I’m getting there.

So, the good news: I finished radiation. Whew. The bad news: radiation side effects are cumulative and linger after you’re done, so the last chunk is pretty tough and so are the weeks after.

For a good long while, I was a redneck. Really – my neck was blistered, red, and tan. The weirdest moment was when I realized that one of the pads they gave me to put on my neck wasn’t really for radiation side effects, it was for burn victims. I guess it makes sense, that is what this was, but I had never thought about it that way.

The end of radiation wasn’t particularly fun, though it was exactly what they warned me to expect. I’ve got to give the doctors credit, they’re good at setting expectations.

Frankly, and I know this is weird to say, but I’ve had a pretty easy ride of cancer treatment up until this point. The Chemo wasn’t too tough (compared to what it could be) and the first half of radiation didn’t hit me too badly, either. Maybe i just have a high tolerance for that stuff. The second half of radiation was another story.

By about day 20 of the 33 treatments, it got unpleasant. I started to take the pain killers right before treatment and that made it more tolerable, but when my face/mouth/throat were sore, it wasn’t so easy to be strapped down in that mask.

In short, the cumulative effect of the radiation made my mouth and throat very sore so that by the end of it, I could only eat liquids and any with flavor was too hard. The saddest day in the whole process was when the taste (flavor) of chocolate became too much to tolerate. That one hurt. I’m looking forward to the point in healing when I can go back to chocolate ice cream. Hopefully it’s soon.

So all that was the bad news. What’s the good news? Based on preliminary exams, the doctors who've looked at me say they  think the radiation had the desired effect. They think we may eliminated a lot of the cancerous cells and shrank the bigger tumors. Now, we won’t know anything for sure until we do scans, and we can’t do that until the swelling goes down, but the doctors think we made progress. That’s what makes it all worthwhile.  We won’t know if the progress was real till middle of December – so I’m keeping things realistic – but at least the doctors think it was positive. I’d rather have that than nothing.

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There is one big irony to the side effects of the radiation treatments. I had doctors telling me – all the time – that I needed to eat more. Because the side effects made eating difficult, I was losing weight (sometimes pretty rapidly).  However, they don’t want me to lose weight cause it’s not healthy during recovery. So I had doctor after doctor telling me to eat more, get more calories, and put more fat into my diet. I was slathering butter on pancakes if I could eat them to get more calories and using whole milk instead of skim to sneak a few more.

The irony? It’s a 180 degree turn from the last 20 years of my life that I’ve been overweight. I’m a kid who loves to eat and eats too much and I’ve had doctors telling me to lose weight for 20 years. Now, thanks to radiation, I didn’t want to eat and the doctors were telling me to eat more. Who says life isn’t full of irony?

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The radiation center is an interesting place, well designed to make you feel comfortable. You walk in and check in with the friendly receptionist and go down a circular stairway into an open waiting room with TVs and games and a big fountain in the middle. Patients sit there waiting for their turn or waiting for their family members to go for treatment.  All the colors are light and friendly and the chairs are soft and inviting (almost).

It’s not like your typical doctors office,  where the people you meet will not be there next time you go back – these folks are there with you every day. My treatment was 33 days and I got to know some of them. At the beginning, you gravitate to the people and their families who are near completion. They tell you how it has been, how they’ve managed to handle the side effects, and how they’re feeling. By the end of things, you’re the one giving advice to the new patients. I’m not really sure when the change-over happened, but by the end I was telling new patients about tricks to numb your throat and make it easier to eat.

I did get through some good reading done during treatment. First I got through Robert Caro’s book on LBJ (Master of the Senate) and then I got through the book about the Middle Class by James Carville and Stan Greenberg. I did them both as Books-on-Tape (or Books-on-IPad to be more accurate). To be sure, most people don’t go through radiation treatments listening to the dulcet tones of James Carville reading a book on tape, but it worked for me.

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I was still able to work during most of this period. It got harder to talk a lot – so I cut back on the calls and the conference calls – but my fingers still work, so I was able to keep up on most stuff. My hours weren’t as good as they were during the first half of radiation because I was taking a lot more pain medication and that left me needing more sleep.

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So what’s next? I'm recovering between Richmond and DC for the next few weeks. It will be a while longer for the swelling to go down and things to heal up. Mid December I’ll be back in Houston and we’ll finally do the surgery. I like thinking that the surgery could be the end of the process. I’d rather be done already, but the idea that there is one more day – even if it is pretty major surgery – is something I can wrap my head around. It will take a while to heal from surgery and then, ideally, I’m done. I feel like I’ve rounded second base and nearing 3rd – not there yet. Will be nice to be on the way to home plate.

[jessefferguson]

They’ve Started Needlepoint

  I haven’t posted in a while, mostly because I ran out of things to say. It’s not that things aren’t happening; they’re just repetitive and not that interesting. The doctors at MD Anderson are treating me for things, it takes time,  and hopefully it’s working. At least that's the plan.

I’ve been working remotely from Houston. I’ve been here for nearly a month straight without going back home and it will be quite a while longer.  And you know what I’ve found out? I can do 75% of my job from a laptop. And the best part is no one else has to know if I’m still in my bed or if I’m sitting at a desk. My little secret.

I am trying not to comment much about politics on here (go Democrats, boo Republicans). I like to think of this space as more about me than about what I do. That all said, watching how messed up Congress is right now actually makes me feel like my situation isn’t that bad. I mean, I have Cancer but they have shutdown/debt ceiling/immigration/guns/tax reform/Syria/Obamacare to deal with. So, maybe we’re even.

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Monday, September 16th was the start of the newest wave of treatment – radiation. It’s been 4 months since I was diagnosed. It took some time to figure out the plan and then we did 16 weeks of Chemo.

The radiation isn’t exactly what I would call “fun” but it isn’t miserable, at least not yet. They bring me into this funky looking room that looks a bit like a nuclear fallout shelter – mostly cause it kind of is – and they put me on a table. This huge machine rotates around me and zaps me with proton beams from 4 different angles.

I can’t feel the zapping (and I’m not sure what other term I could use to describe it). The discomfort comes from the fact that they have to immobilize me so they zap the right places (important, right?). That means a big mesh mask bolted down to the table. It’s really tight and unpleasant. I’m apparently not made to wear a fencing mask, I guess. Here’s the best picture I could find

.

Each treatment takes about 45 minutes from start to finish. For other patients, they have nice music playing in there, but I hijacked the stereo system and hooked it up to my iPad. Now I’m listening to Robert Caro’s books on LBJ. Much more relaxing!

For the science nerds among us, proton therapy would actually kinda neat if I wasn’t going through it. There is a giant machine – the synchrotron – which accelerates protons in a circle to almost the speed of light before they shoot them at me. The protons are traveling around in the synchrotron and may travel 300,000 miles – same as circling the earth 12 times – and they get zapped out through a huge 190-ton device that directs them to the right place on me. 300,000 miles traveled and sent out through a 190-ton device yet the machine is precise down to 1mm.

When I come out of the treatment, the biggest problem is that my face looks the like a waffle. The mask has pushed down and made little boxes all over. It’s not painful, just uncomfortable and funny looking. It goes away pretty soon each day.

I’m starting to notice some side effects – a little discomfort but nothing too terrible. I’m told it takes until weeks 3 or 4 for the side effects to really hit. We’ll see. I’ll tell you what they are if and when they hit. ---

The radiation treatments are 5 days a week and we’re continuing the chemo as well. Chemo is every Monday, proof that Monday’s are cursed even if you’re not in your office.

So I finished a radiation treatment Monday and went into my little room for Chemo. I’m used to it by now: In goes the IV, up goes the bag, down goes the juice. Next bag. Next bag. Few bags later, we’re done.

At the end of Chemo, they also gave me a flu shot. I know I’ve gone through a lot in this, but the childhood fear of shots still means that I am more apprehensive about the shot than all the rest of this crap. It’s strange how our mind works.

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There is one part of this whole treatment process that I’m a bit chagrined about. I’ve taken up needle point. Not that kind of needle point that you’re think of. I’m not knitting or anything (could you imagine me knitting?). No, I’ve started acupuncture.

During acupuncture, I like to think that the doctor is doing needle point on me. Its more accurately reflects my attitude toward the nature of the situation.

Now, you should know something about me. I’m not much of a believer in things like acupuncture. In fact, I don’t really believe in much medicine that my childhood pediatrician didn’t teach me about – especially any of this “new fangled stuff” like acupuncture (note: acupuncture has been around since 2000BCE but whatever).

So I go in there and they put in the needles and leave me for 20 minutes with some calm music. What the heck am I supposed to do for the 20 minutes? Think? I tried once to reach for my blackberry but the doctor wasn’t too fond of that idea. So I wait.

Why am I doing acupuncture? Well, some studies have shown that it can help minimize the side effects of radiation. I don’t know if I believe it, but at this point, why not try, right?

Tomorrow is Friday – last radiation of the week.  It’s day 10. After I am done, I go over for needle point. On we go.

[jessefferguson]

Out of the frying pan and into the…Microwave

I looked up from the dinner table at the microwave heating up our potatoes for dinner. Instead of my usual wondering how much butter I could put on them, today, I looked in the microwave and said: “hmph, that’s kinda what they’re going to do to me.”

This coming week begins the next phase of treatment: radiation.

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On August 21st, I had my 4th and final round of full chemotherapy. Just like the last three times, I went in to the hospital for a 6 hour IV drip. It’s been getting a bit harder for them to find a good vein for the IV, but they make it work. I guess I’m not built to be an intravenous drug user.

You know what the most challenging thing is during the chemo? Reaching up to your laptop to type emails and do work while an IV is in your arm.  I usually get a good deal of work done – a TV, a laptop, an iPad and a cell phone. But it would be worse to not doing anything during Chemo and just think about the IV being in you dripping.

This treatment round got awkward for a few minutes because I took a phone call from a reporter that really got me riled-up. Not his fault, he couldn’t know I was in treatment at the time. But, the doctors had me hooked up to a blood pressure monitor every 5 minutes. Suddenly, the cuff started to inflate and it took my blood pressure right after the frustrating call. Not surprisingly, my blood pressure had surged, the alarm on the machine went off and the nurse got concerned. They thought it was a reaction to the chemo. It wasn’t. It was the reaction to real life.  I convinced them it would be fine when the machine took it again in 5 minutes after I cooled down and, sure enough, it was. The hazards of working during treatment, I guess.

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I stuck around for a few days after the Chemo treatment to start taking tests and getting prepared for radiation. We knew that would be next on the list and it was now time to get started.

They first made a mold of my mouth. It wasn’t hard, though the molding material was a bit disgusting. The most interesting part that when they measured my mouth, they told me it was very big… I’m sure everyone is shocked to find that one out.

Second, I went over to the Proton Therapy Center to get set up. In order to make sure I don’t move my head during the radiation, they made a mask for my face and head that clamps down to the bed in the same position each time they do radiation. It’s a bit weird and not the most comfortable thing I’ve ever been in. If you ever saw Silence of the Lambs, I look a bit like Hannibal Lector with the mask on.  The technology itself is pretty interesting. The put material on my face that feels like the strings of a tennis racquet and it suddenly molded to fit every contour of my face. In 2 minutes, they have a mask. It reminded me of a cross between play-dough and paper-mache.

I had to sign a consent form to go forward with the radiation. Medical consent forms are a bit strange. They list every possible downside and side effect that could possibly happen – the paper version of those drug commercials that quickly list all the terrible things that could happen. My favorite commercials are the ones that cure something small (leg soreness) while warning you of serious side effects (death).

Well, the consent forms here list lots of bad things that COULD happen during radiation, not necessary that WILL happen. I told the Doctor she could just get rid of the forms and just write “lots of bad things can happen to you and we’re not responsible if any of them do, please sign here….”

Sometimes things do hit home though. I was in the hospital the other day for an appointment to get ready for radiation, when I saw a family of two kids and two parents in the waiting room. They seemed a bit sad but were still talking and playing around. I started to wonder which of the parents was the patient and what they were “in for.” I looked at both of them and couldn’t figure out who it was – neither of them had an MD Anderson bracelet on that they give to patients to identify them. I started to think maybe they were new and didn’t have their bracelet yet.

Then, it caught my eye. There was the bracelet on their 10 year old daughter.

 Obviously everything I’m going through isn’t easy. We know that. But I’ll be honest that sometimes the hardest part is seeing the other patients. Especially the kids.

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So Chemo was over, we finished the preparation for radiation, and I flew back east. I was home in Richmond for a while and saw some good friends. I even took a quick work trip to DC and New York. Overall, the recovery and side effects from this round were pretty easy. Maybe I’ve just gotten used to it. My dad used to say if you hang upside down long enough, you’d probably get used to it.

The last three weeks have been pretty normal and normal is a good thing. That said, I can’t avoid the elephant in the room (or the tumor in the gland, as the case may be). I can talk to a friend, colleague, reporter, coworker, etc. about anything and the discussion inevitably includes the question of “how are you doing” or “how are things going.” Not a bad question to ask, but it’s hard to not have it come up.

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One of the upsides of all of this is that I’ve reconnected with some old friends. I’ve heard from college and high school buddies that I haven’t talked to in years. I’ve even met some new people who reached out because they hard what was happening. That’s been neat. Some are survivors of Cancer and others are current patients. Been interesting to swap stories and compare notes.

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Now I’m back in Houston as of this weekend, getting ready for the week of appointments, tests, and the start of radiation. I’m not really looking forward to it but that’s mostly because I don’t know what to expect. I got used to Chemo and now I have to start anew.

I guess it’s time to get out of the frying pan and head into the Microwave.