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.
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?
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
Gulp. As of today it’s been three months since I sat in that Doctors office in DC with the broken air conditioning and found out my first test was positive and I have Cancer.
3 months. Time flies when you’re having fun? Not really fun. Some days it seems like it’s just been a week and other times it seems like 3 years. It never seems like 3 months.
What have I learned in 3 months? A lot of people I know, and a lot of people I don’t know who have reached out, have had Cancer. The network is really amazing. It’s like having support from the alumni network at Princeton or Harvard (both rejected me for college but I’m not bitter).
At times I have wondered if MD Anderson is the right place to get my treatment — It’s so far away from friends and family. Then, just yesterday, it was confirmed that Beau Biden (the Vice President’s son) was coming here for his tests and a prodcure. I hate the way it happened – cause I don’t want this to ever happen to anyone– but it did serve as a good confirmation that I’m in the right place. Good enough for Beau, good enough for me.
In all seriousness, he’s in the right place. The team here at MD Anderson impresses me more every day. I wish him all the best in recovery.
I was recently forced to wonder: Could the heat of a competitive election season (post Labor Day in an election year) be worse for me than Chemotherapy? As it turns out, possibly.
The question hit me the other night over dinner with a good friend and former colleague who had seen me and worked with me on multiple election nights in the last few years. We had talked a number of times since my Cancer diagnosis but he hadn’t seen me.
In the first 10 minutes of conversation, he mentioned that I actually looked more rested and healthy today than I did in the heart of the 2012 campaign. It made me think: I’m sleeping, eating right, and not working late. Maybe that’s healthier, even with toxic chemicals streaming through my blood, than normal. It makes me wonder: how bad did I look on Election Day 2012?
It’s been a long while since I wrote an update here, largely because I haven’t had much to update. It’s really just going through the motions right now – trying to “do normal” as much as I can. I’ve been working a lot remotely – God bless the internet. My staff still appreciates one line emails at 2 a.m. with some ridiculous request… right? Hope they do, because I haven’t stopped sending them.
Early August was the third round of Chemo. It was really just like the previous two other than I had some scans before it (more on that later). I had a weird reaction to one of the drugs, but it didn’t turn out to be a problem and is, apparently, pretty normal. That said, it freaked me out a bit.
After Chemo, I had a few more appointments in Houston and headed home to Richmond, VA (where my parents live). I got to the House there and just relaxed. I’ve honestly found my favorite thing to do during this whole period is to sit in bed with my laptop on the office network, watch some TV, do some work, and sleep some. It can take anywhere from 5 to 10 days to get through the Chemo side effects. Between a laptop, iPad and cell phone, I’ve got a pretty good command center going in my bed.
I saw some of my friends while in Richmond – even got to the new swanky restaurant. It calls itself Southern Fusion. I’m not really sure what they fused it with, but the food was good.
Then I headed up to DC for a week to get into the office. It was good to schedule some meetings and see some friends. Who would want to miss a good meeting with lawyers, right?
Two big highlights from DC: One, a Trivia tournament with a bunch of friends. We didn’t win – but we didn’t do too badly. Two, a happy hour for friends from Virginia politics – great to see everyone. Happy hours are great, though considerably less fun when the doctors won’t let me drink.
I do like meeting newpeople during this period –they don’t know what I’m supposed to look like with hair. It’s refreshing.
My grandmother has wanted to see me for a while (likely since May 21st when the diagnosis came in). I flew out to L.A. for 4 days to see her and some family. It was great to get out there – and great weather.
I saw two different babies while I was in L.A. – one family and one friend. I’m not that most adept at handling babies – though I’ve gotten better as more and more of my friends have them. In the back of my mind though, I couldn’t help but wondering what twists and turns these babies will encounter on their rides.
Now I’m back to Houston.
Here I am writing this post while sitting in a hospital bed. 3 months after this started and I’m in my fourth round of Chemo today. Another IV. Another dark bag of toxic chemicals.
In my profession, what I’m doing now is called “burying the lede.”
When I was in Houston in early August I came in for a new CT scan to check on progress.
The test was scheduled late in the day – 7:45 p.m. I figured the place would be empty. I was wrong. I got to the waiting room and it was packed. Everyone there looked really sick – masks, blankets, looking frail. I was also the youngest person in the room again. I’ve gotten used to that by now.
The called me back, I got changed and they put the IV line in me to give me chemicals for the scan. Those are never fun – I don’t mind a blood tests but IV lines freak me out. I don’t like anything in me that goes out of me and isn’t supposed to. Things in me should stay in me. Things out of me shouldn’t come in. I’m a purist like that, but I don’t have much luck with those rules right now.
I went into a one person waiting room – room for just one chair. There I sat. In a 3 by 3 room. Thistook a long time. It was probably a 30 min wait but it seemed like 4 hours. Mostly cause I couldn’t stop thinking about the test. I know it’s the very first test and doesn’t mean that much – and I didn’t have high expectations. But what if I didn’t show any progress? What if the tumors were continuing to grow? What if… What if …. What if.
We went back for the test, lay down, and they ran the scanner over me. Quick and painless. It’s eerily quiet in those rooms. As weird as it may seem, during the 5 minutes of the scan – I did one thing to help the test along. I thought about VERY small things: dust, heads of pins, sand, etc. I figured thinking of small things might help my body make the scans find things that were smaller. Don’t ask where this theory came from but I’m allowed a few ridiculous things in this process.
Then we were done. I Went home< tried to sleep and failed miserably.
The next morning I met with the doctor. The first thing she told me was the results of the tests – she knew we couldn’t pay attention to anything else.
The good news – progress. The tumors are having a modest response to the chemo and shrank 20-ish percent. I’ll take it. It isn’t a game changer but it’s a hell of a lot better than going backward. And it’s honestly the first “good news” I’ve gotten since this started in the spring. It’s a weird balancing act when you get good news cause you don’t want to make it seem too good – there’s still a long tough road ahead.
But it’s good. And I’ll take that.
Now I’ve had my third treatment and going in for my fourth today. My priority: having another round of good news to share sometime soon and maybe I won’t bury it at the bottom of post next time
So I got to go home to the East Coast for two weeks. Houston is a nice city but it’s hard to associate it with positive things when I’m there for the reason that I’m there for.
So it was very good to get home. I finished the second Chemo treatment and flew back to Richmond the next day. Unlike the first round of Chemo, this one was a bit easier, mostly because I knew what to expect.
I got home to Richmond and took a few days to recover from the side effects. People brought dinner and came over. It was nice to have people around that I knew —- the real upside of getting out of Houston. I even met two of my best friends one night for Frozen Yogurt. The place was packed with teenagers and we were the oldest people there. I find large groups of teenagers fascinating — 6 teenage guys circling 14 teenage girls with one of the 6 guys being the one brave enough to walk a bit closer and talk to them. Watching all them makes me wonder if sociology would have been better than politics. Though moody, teenagers in large packs and Congressional Republicans actually have lots of similarities.
(Side note: I came up with a marketing campaign for Frozen Yogurt that includes giving away FREE Frozen Yogurt’s and calling them “Free-Fro’s.” People get to shoot foul shots; baskets get yogurt. I may have too much time on my hands.)
After Richmond, I headed up to DC. I don’t have a home up there cause we closed out my apartment, but lots of people offered me a place to stay. As nice as they all were, I got a hotel – a little bit of “me time” sounded nice.
I went to the office for 2 days as well, which was good – got a few meetings in that I’ve been wanting to have in-person and seeing everyone was great. I’ve been able to do a decent amount of work remotely thanks to the magic tubes known as the internet, but actually being in the office is super helpful. I even got to see a lot of former staff, reporters and political friends at a send off party for my former boss. It was great to make it out! Best part may have been comparing the shape of my bald head to the shape of others there who were bald-by-choice.
The only bad thing that happened on my trip to DC was my car broke down. I picked it up at the office – having not driven it for the 5 weeks I was in Houston – and it drove fine. One day later, as I was driving back to my hotel, the battery light came on and the electrical system cut out. I thought to myself, “you gotta be kidding me.” In the middle of all this, my car is going to die. It got fixed, though, and I drove back to Richmond and made it back to Houston.
I did have one really interesting thought while I was back in Richmond. I was out one night by a lake and was getting a LOT Of mosquito bites. I noticed that the mosquitoes died pretty quickly after they bit me. Forced me to wonder if the chemo toxins in me were killing the bugs when they tasted it. The dosage doesn’t hurt me that badly – side effects and, hopefully, kills Cancer cells. But a little mosquito? Maybe we should get rid of our bug zapper and just hook me up outside instead.
These are the things I think about.
Got back to Houston on Sunday. Doctors appointments Tuesday and round 3 of Chemo is on Wednesday. It’s now been two whole months since the first doctor told me I had Cancer. While I don’t feel any better about the diagnosis, I do feel like I’m in the right place for treatment and we have a plan that we’re executing. That’s better than the hopelessness right after the diagnosis and the waiting game that ensued.
I had a day back here in Houston to get settled and went over for tests on Tuesday night. I like to call that Pincushion Hour. While needles don’t really HURT, after a few of them I feel a bit like a pincushion.
I got to the hospital at about 6 p.m. for a blood test. That was pretty easy. Checked in. Not a lot of people there. They verified that I was who I said I was and took me back. The blood test room is weird – the chairs you sit in feel like your elementary school desk with an arm on it (for them to use to take the blood). It’s also weird because there are a lot of desks in one big room. It makes it harder to avert your eyes from watching the blood come out of you, because you end up watching someone else. It’s a tad bit awkward.
Now, I should let you know a little bit of a secret about me: I’m a big baby. I tell that to every single nurse who gives me a test with a needle. I tell them I’m a big baby who hates needles. I’ve had a lot of them in the last 2 months, but I still tell that to each nurse. The truth is, needles don’t make me uncomfortable any more — a little pinch, no big deal. But, over 20 years ago, I remember getting a blood test and the nurse couldn’t get it right. She stuck me 5 or 6 times (seemed like 10) before she could get what she needed and I hated it. So, 20 years later, I think I’m going to hate every blood test. The mind is strange sometimes.
After the blood test, the pincushion time continued. I went up and checked in for a CT scan – a scan of my head and neck – to see if things look like they’re getting better, staying the same or getting worse. They checked again that I was me and took me back to get the IV before the test. It took about an 1.5 hours before I got into the scanner. I got to sit in a little private room and stare at all wall for a bit waiting for them to be ready. The test is quick and painless – though it’s still weird to have people stuff you in a tube and scan your head. I wonder what they’re going to find and I don’t want them to find anything new – I had that happen to start this whole damn process.
While I was in the CT scanner and I decided to think about VERY small things – figured it couldn’t help to focus on small things if I want the tumors to look small on the scan. Doubt it helped, but why not?
So now the scans are done, the tests are done and I head over to the hospital on Wednesday for another round of Chemo. I’ll work on my next post from there.
The Big Question
The question I get most often from friends, family, people at MD Anderson and even casual acquaintances is: how are you doing? I’ve been awestruck by the number of people that genuinely want to know. It’s actually a much harder question than it used to be. It took me a while to figure out how to answer it.
My first thought: “Well, I have Cancer, so how the hell do you think I’m doing?” But that seemed a bit belligerent and dismissive. When you live in Washington, you can become a bid jaded to think that questions like that are just perfunctory while the person is looking for the next guest to say hello to – but these questions are real.
I went through some other options:
• “Not loving it but surviving.” That sounded too defeatist. • “Hanging in there.” That didn’t tell anyone that I do feel I’m making progress. • “I’m doing great.” That seemed to ignore what was really going on.
Most of the time I get this question via email so my latest and favorite response is now:
So it’s all gone. My hair that is. I wasn’t surprised —- I was warned it would happen during Chemo. That said, it’s still odd. I haven’t not had hair since I was born. But that was a long time ago and I don’t remember it too well.
I came into the barber at MD Anderson Cancer Center about 10 days ago for a short buzz cut because my hair had started to fall out a little. They told me I should just shave it because it was all going to fall out anyway. I said no, no no. I wasn’t ready to go that far and the buzz cut sounded like a nice idea.
You know what? They were right. The rest fell out. So, I went back Wednesday and it’s all shaved off. It was very weird to feel big locks of hair drop on my shoulders and know it wasn’t just a cut or a trim, but a goner. I’ve gone back and forth deciding whether I look like the characters from Cone Heads, Yule Brenner in King and I, Lex Luther or Mr. Clean. It’s a tough call.
But what’s good about hair is that it grows back. What’s good about Chemo is that the tumor (hopefully) doesn’t.
Despite the follicle wars of late, things are going ok. Not fun, but ok.
The first round of chemo treatment is finished. I was very tired for a while during the 3 week period, as my blood counts hit their lowest point, but it came back up to normal. And last week in Houston had been pretty good: Ate out at restaurants – Houston is a total foodie city. Went to an Astros game – and they actually won. Minute Maid Park is a fantastic stadium – I’ll go back. Though, I’ll admit, going to a ball game is far less fun when you can’t have a beer. Even just one. I even visited visit the Holocaust museum here in Houston (not exactly a pick-me-up, but very worth a visit).
Then, Wednesday, was doctor appointments and Chemo treatment number 2. The docs were good. Interestingly, the biopsy they did found some new available treatments for them to use - hormones in the tumors they can target. That could be good news.
Before the Chemo treatment this week, I had an echocardiogram – a scan of my heart. I wasn’t exactly sure what I was looking at on the screen but definitely got some news out of that: I have one. I know there had been some doubt about that claim (mostly among some Republican candidates for office over the years). It’s confirmed – I saw it on pictures.
During my visit, the doctor also confirmed what a previous doctor saw: the tumor MAY be shrinking and softening. Nothing for sure until we do scans, but I’ll take it.
The second Chemo treatment was fine. It’s still VERY strange to have dark bags hooked up to the IV and know that a toxic chemical is being dripped into you. Takes a bit of getting used to. The Chemo didn’t get started till 6 p.m. which made it a late night ending at 11 p.m. It’s a bit ere to exit out of a huge Cancer hospital at 11 p.m. at night.
It’s boring to just sit there for treatment and wait as it drips into you, but I’m getting used to it. The worst part about this round of treatment? My internet wasn’t working right. First world problems, right?
The packages keep coming in from folks and it’s amazing. The support means a lot. And I now have more reading material than all my textbooks from college combined. I didn’t read the text books back in college so we’ll see what happens to the reading material.
The other bit of good news right now is that I headed back to Richmond on Friday. I get to be on the East Coast from now till the end of month when I go in for treatment #3. I’ll probably be in Richmond most of the time because of the side effects, but I’m definitely going to sneak up to DC for bit if I can. It will just depend on how I’m feeling. It’s nice to get out of Houston – I showed up here on June 10th for a short visit to get second opinions and have now been here for over a month for treatment.
The other big change for me… I’m homeless. It’s official. I gave up my apartment in DC area this week and the movers took away all my stuff and put it in storage. I couldn’t justify paying rent in DC while renting an apartment in Houston. But it’s weird not to have an apartment of my own – I’ve had one since my Junior year of college. I’m lucky to have great friends who supervised my move but now all my worldly possessions (and trust me they’re not that worldly) are in crates and boxes at a storage unit. I’ll look forward to getting them all out of storage cause that means this is all over.
It’s 3:47 a.m. on Friday morning and I’m awake in my bed. It’s no surprise — I’ve not really been sleeping straight through the night since Chemo started. It’s been 10 days since the first treatment and I’m making it through. Is it fun? No. Is it tolerable? Sure. Is it worth it? If it works.
The upside of not consistently sleeping is that I see the news at weird hours – and what whirlwind week for the country.
Last Sunday I was up at predawn hours to see Edward Snowden “escape” Hong Kong for Moscow. Of course, he was supposed to be in Cuba or Ecuador by now. Instead, he’s still in Moscow. A guy, stuck in an airport on a layover. That’s still big news? Fly to Charlotte or Atlanta and you’ll find people like that every day.
And what a week for our democracy: Lose the voting rights act, gain gay marriage, and pass an immigration bill out of the Senate. All in one week. It makes me tired just to type it. And I’ll admit, I was a little pissed to have missed this week at work —- you always remember the big ones like this.
Things are ok here in Houston. I got an apartment – I am going to be here a while. I’m lucky my parents can travel back and forth. And with a computer, an iPad, a blackberry and a TV, I can do everything that I can do at my apartment in Washington.
On Tuesday, June 18th, two things happened: I started Chemo and I started working on this blog post. I started working on this blog post while I sat in a hospital bed in a very nice (private!) room at MD Anderson. We had chairs for guests, a dresser, a nice TV. Welcome to Chemo.
First they put the IV into me. That’s fine; I’ve had a bunch of those at this point. Normally they hook up to a big bag of stuff that makes you feel better. But this time it wasn’t the typical stand with one bag at the top. It had 10 bags. Most of them looked like nice clear liquids. But there were two bags where the liquid was dark color and they had warning labels all over them like you see on toxic chemicals. Those were the Chemo. Delightful. And they weren’t really going to make me “feel better.”
The treatment took 7 hours and the biggest side effect was boredom. I knew it wasn’t going to be fun when the nurse told me that the first 2 hours of treatment and the last 2 hours were just medicines to head off the side effects of the actual chemo in the middle. I did work from bed – writing some stuff, responding, etc. I saw a reporter friend of mine on MSNBC that afternoon and shot him an email. Told him that seeing his ugly face on TV might make me throw up even when Chemo doesn’t. I couldn’t resist having a little fun with things.
Day 1 was over. Chemo was in me.
The next few days were ok – I didn’t feel 100%, but didn’t feel terrible either. Kind of like when you have a virus. Maybe a better description: kind of like a long hangover. It’s tolerable. The few days after that were a little worse. I’ll spare you all the details but I don’t like feeling weak and I don’t like spending time in the restroom – I was doing both. Such is life.
Every day since the Chemo started I’ve been running my hands over my tumor and convincing myself that it’s getting smaller. Then, immediately after, I convince myself that I’m just letting myself convince myself. I convince myself it’s not really getting smaller yet and I’m just being overly optimistic – so I move on.
One week after Chemo started, I had an appointment at the Doctors. It was the first day I’d left the apartment complex since the Chemo and it was actually harder work than I expected it to be – I’m just tired.
Excitingly, that we got a SMALL good indication from the doctor. Both the doctor and his fellow said it felt to them like the tumor is a little softer than a week ago. They assured me it might not mean anything, but could be a small bit of good news. The first good news since this all started. I’ll take it.
There is one big similarity between having Cancer this summer and all those summers I used to go to camp. People like to send packages.
The packages and letters and mail keep pouring in. I’ve started hearing from friends from High School who I haven’t talked to in almost 15 years.
Here are a few highlights include: A gavel from the Democratic Majority from my office; A Ping pong ball gun from friends of mine in Richmond ( I shouldn’t be the only person in Texas not packing heat); Ice cream. Lots of Ice Cream. And much more.
The most amazing thing came a few days ago. DCCC Chairman Steve Israel called me one morning to check in and how I was doing. We talked for a few minutes and then he asked me to do him a favor. He said he had a video for a Member retreat that he wanted me to lay eyes on if I was up to it. I said sure and he said he’d email it to me. I thought SOMETHING might be up because the Chairman doesn’t usually ask “permission” in order to send me work to do.. I opened the video on YouTube. It was a get well message from my team at the DCCC and folks in Washington and it was incredible.
I’m not much of a crier – haven’t teared up except that first day when the biopsy came back – but this one got me. I’m laying on my bed watching a video that included Chairman Israel, other Members of Democratic Leadership, reporters I work with, and our DCCC staff. It was a definite pick-me-up and know I’m going to watch it again and again throughout this process.
I’ve become convinced of a few things at this point: (1) Having good friends, family and supporters cheering you on helps, a lot; (2) These are the right doctors at the right place to fight this; (3) This is going to take a while.
Chemo treatment number 2 is on July 10th. Getting ready for that now. It’s a long road ahead, but at least I’m on the road …. And we’re moving.
It’s been a full week since I updated – busy week of doctor meetings, scans and tests.
As of tonight, I’ve been in Houston for a week. Friday, I went to a local synagogue for Friday night services. It seemed like a good time to do that.
The service was very nice, though saying a prayer to heal the sick was tough to get through. Afterwards, I went into another sanctuary, where no one else was, and had a private chat. God and I needed to talk and it was time. It isn’t something I’ve done often in my life – faith has always been part of my life, but never a cornerstone. I’m not going to share everything I said during our chat, but you can be sure I asked a few tough questions and asked for a bit of strength and a helping hand.
The verdict’s still out. We’ll probably have to talk again, I think.
That was Friday night. I’ve been here since last Monday.
I like my doctors – especially surgeons – to be slightly arrogant. If you box with god every day and win, it’s ok to be a little full of yourself. And I’m lucky to be treated by some of the best – the heads of Head and Neck Cancer here at MD Anderson. I’ll currently call them “some of the best” until I get through this. Then they can become “the best.”
On Thursday we had a plan: I was going in on Monday (6/17) for a 10-12 hour surgery to remove the tumor. First reaction? Gulp. Though I’d be asleep for all 10-12 hours, unlike my family who would have to sit and wait. My next thought was to dread the recovery and all the tubes involved. I hate tubes. My final reaction was to be glad we were finally getting this crap out of me.
Then, on Friday morning, the plan changed. MD Anderson does something pretty smart – they put all the doctors together in one room and talk through tough cases like mine. So we’re changing plans. I met with my Doctor Friday morning and he explained to me that they wanted to start with Chemo first. It’s not the usual plan for this type of cancer, but they want to stop the tumor from spreading and shrink it before starting surgery. The doctor asked me if I was ok with the plan. What do I know?
I thought of all the conversations I’ve had with candidates for public office over the years who’ve told me they know how to do it better than I do. They don’t. The same holds here. He knows how to fight cancer. If he wants to run office or pass a law, I’ll give him advice.
So on Monday (6/17) I have a quick biopsy and I start Chemo on Tuesday. Sitting there for 7 hours while they drip toxic chemicals into me won’t be fun. I like my hair. Oh well. Best thing about hair is that it grows back.
They outlined all the side effects of Chemo. Some are terrible but unlikely. Some are very likely and common – widely known. They outlined this scenario for the few days after a Chemo treatment: I’ll be tired, nauseas, vomiting, and sore. I won’t want to move. Sounds like a rough Sunday and Monday hangover after a good Saturday night in College. Won’t be fun, but it’s something I can deal with. We’ll see if I feel that way when I’m in the middle of it.
—- The thing I find the strangest about the way we “treat” and “kill” Cancer cells (a toxin in your body) is that we put more toxic stuff in our body. Treating Cancer is kinda funny – we attack bad stuff with bad stuff. It’s like responding to negative advertising with other negative advertising. I can understand that.
I did hear from a researcher here at MD Anderson recently. She wanted me to sign up to be part of some research, which was fine – but she mentioned that that the pathologists are enjoying my case. I’ve always been proud of how unique I am – how individual – a special flower. But when it comes to cancer, I’d much rather be more run-of-the-mill. Alas, I keep things interesting. I don’t actually think that’s a good thing but I like that I’ve got them interested. Glad I’m worth attention. I’ve always tried to get noticed whatever I do.
So, it looks like I’m going to be in Houston for a long while. I guess that’s ok. It’s not like I’ll be doing much. Food here has been good, at least.
Here we go. Treatment starts Monday. First a quick biopsy then Chemo on Tuesday.
So this was an interesting week. I started the week by telling everyone I have Cancer and ended the week sitting at my desk as if nothing had changed.
Last Sunday, I started making phone calls to tell people what was going on. I had the “pitch” down to 13 minutes. I couldn’t find a way to get through all the normal parts of that discussion any quicker. As I started through the call list I had made, I had a quick news flash: What the hell was I doing? Had I really made call sheets and scheduled call time to tell people I had cancer?
On Sunday night, I stopped making those calls and just decided to share the news en mass with friends and colleagues and get it over with – so I created this blog. I emailed a note to a few folks around 8p.m. on Sunday night and threw a link up on Facebook. I figured some would write back and I’d hear from some other friends the next day. I never expected what I got.
Through the magic of the series of tubes known as the internet apparently the whole world knew.
As of right now, I’ve heard from over 1000 people – via email, calls, Facebook, etc. The messages come from family, friends from college, from my work in Richmond, from my time here in DC. They come from both sides of the aisle and ends of the age spectrum. Some people I hadn’t heard from in a decade, some I had never even met. Some came from the upper ranks of political circles and elected offices and others from regular people who just read the news and emailed.
It’s really bowled me over – I never expected this. Every time I looked back at my computer, I had another message. The notes meant a lot – shared memories, personal experiences with cancer or family members with cancer, advice, and unrelenting pledges to do whatever they can.
A couple of them stood out for comedy if nothing else:
One prominent Republican staffer on the hill wrote, “If you go after this cancer with the determination you go after us Republicans every day, you’re not just going to beat it, you’re going to make it regret picking the fight in the first place.” I gotta admit, I liked that one.
One progressive journalist simply sent a note with a subject line of “thinking of you” and the entire text was “fuck cancer.” It pretty well summed things up.
One senior Democratic official joked, “Look, if you just needed a few months all you had to do was just ask” and a Democratic operative sent a note with the subject line “WTF” and the text “you’re taking off work?” I guess the work-a-holic thing is well known.
One of my favorites was a former intern from a few years ago wished me all the best and thanked me for the “opportunity you gave me to condense the Southern region’s press clips each Thursday during that summer before the midterms.” Gotta love interns – he was thanking me for letting him do the menial parts of my job at the time
I even had some people offering to search their purses for that cancer killing machine (see previous post).
The others that meant a lot were from strangers who had read the news, read the blog, and just emailed. Sometimes they were people involved in politics; often not. It was wishes and prayers and cancer survivors just sending a “hang in there” note with their experience. They were all amazing. Thank you all.
All the notes and support won’t make the disease go away, though. I knew they wouldn’t, but will admit to waking up a couple mornings this week wishing it was all a dream, wishing maybe I could be that unexplained miracle case where it just goes away over night. It didn’t work.
That was Sunday. Then, on Monday, I went back to work.
I was actually in the office almost this entire week and it was very weird to be there. Everyone is great and supportive. I couldn’t ask for more from them – and some are even calling in favors to help me in this process.
That said, it’s odd to be in the office and talk to coworkers and reporters. The first day back people seemed to have a weird look about them. You could tell they wanted to say something but weren’t sure what — so they said nothing. It was fine — I don’t blame them — but it was awkward. I’m still not sure if the new intern kid is looking at me cause he knows I have cancer or looking at me cause he’s 21 years old and has no idea what he’s doing. Who knows.
The other hard part is backing myself out of work. I don’t want to get into new projects or put new things on my plate. I’m trying to back myself out of work-related obligations so I can more easily check out for surgery and treatment. That’s hard for me to do – I don’t like watching the game being played and only getting to coach from the sidelines.
I did get a strange sign this week. I turned on my Netflix one night to watch an episode of West Wing – get my mind off things. Guess what was the next episode of West Wing for me to watch? The one where they talk about curing Cancer.
On Friday afternoon, I was in a meeting at our office and got a called from the doctors in Richmond. They got the results back from the latest testing and the diagnosis was confirmed. Well, shit.
I had gone in earlier that week for another biopsy. It’s a weird biopsy and is more uncomfortable to think about than it is to experience. (If you’re squeamish, skip this section). The stick needles in my face and pump them back and forth to pull out tissue samples to test. It’s in lieu of doing a full biopsy and I can walk out of the room after just an hour. It’s actually pretty amazing that they’re able to do that – the medical technology continues to amaze me.
What doesn’t amaze me? Medical records. I spent a bunch of time this week between 3 institutions, 3 offices at each institution, trying to gather and coordinate who had what records from which tests. It’s infuriating.
The other bad news is that the swelling is getting more uncomfortable, and, honestly, that has me more scared. I can feel it more now than I ever have – in my face, my check, my jaw and down my neck. That can’t be good news. I found myself getting tired a bit this week and leaving work early – that’s just not me. I tried to go out with friends but had to leave – just wasn’t up to it.
I don’t think I’ll be work much next week. I’m heading down to MD Anderson in Houston to get their opinion and see about next steps. Right now, the biggest thing that’s frustrating is that I haven’t started treatment. I’m ready – anxious – to start. I talked to one expert the other day who said this can be the hardest part. In my thinking, the sooner I start this terrible treatment, the sooner it will be over.
But the doctors want to make sure they get the RIGHT treatment, so I guess I’m for that too.
The air conditioning was broken in their office and I was 30 minutes early. The doctor was 30 minutes late.
An hour after sitting in the chair in the exam room, sweating like a stuck pig, the doctor came in. He told me what I knew he was going to say – but hoped he wasn’t – that I had cancer.
Couple things went through my mind: why is this happening to me? What will the next few months be like? What’s going to happen to my career? What will be the impact on my quality of life? Will I have a life?
I didn’t have the balls to ask the last question…. Couldn’t bring myself to do it. Instead asked what questions I was forgetting to ask that others ask and the Doctor brought that one up.
That was Tuesday, May 21, 2013. Not a great day for me. I left the doctor’s, called my parents, cried my eyes out in the car, and drove back to work. After all, I had conference calls to prep candidates every 30 minutes till 9 p.m. that evening.
This hasn’t been my favorite month. It started about 8 weeks ago when I saw myself on camera and noticed my face looked fat. I thought it was nothing — just some weight gain. A month ago, I was home with my mother and she asked, “What’s the swelling on your face for?” (Imagine it said with a hint of leftover New York accent.) Oh shit this could be “a thing.” I went to a doctor – he told me it was nothing. Probably just an infection, but 3 weeks of Advil and antibiotics didn’t help.
I kept the swelling covered up pretty well by letting my beard grow. I could tell though – especially if I saw a picture of myself.
The second doctor got a CAT scan to look at it and it showed something. She sent me to a specialist. We thought it was a stone in the salivary gland – no one had even mentioned cancer. They did an ultrasound of my face, and running the scanner over my face the doctor saw several masses in my cheek and neck. I could see them too. He looked concerned.
There was a team of doctors hovering over this device. The only times I had ever seen an ultrasound before was on TV and it usually involved pregnant women – this was decidedly not that. He told me he wanted a biopsy. Gulp. I know what that means.
We did the biopsy and a few days later I went back to get the results. That’s the day the AC was broken – May 21, 2013.
I’m lucky to have parents as supportive as mine are. It’s really amazing. They were ready to drop everything to drive me to an appointment or just be there when I got back with bad news. They are ready to do whatever I need over the next few months to fight this. I’m lucky.
I started telling a few folks. Some of my closest friends. Some family. Told my boss. Everyone was fantastic – supportive, ready to help, told me to focus on my health.
I can be a bit obsessed with work (just a bit). I’ve been a work-a-holic for about 15 years. I’m the type of person who checks news clips between 2 and 3 a.m. because I can’t wait till the morning to find out what’s going on. My phone doesn’t vibrate or beep when I get an email, I just check it often enough that I catch everything. That’s going to make this hard. One good friend put it in perspective – my JOB for the next few months is to fight cancer. I think I get that.
I told more people – some folks I work with, some long time friends from college. They were incredibly supportive.
It’s a weird conversation to have. It usually goes something like this: “Hey, I gotta tell you about some medical stuff. My face has been swelling up. I have cancer. I’m going to beat it. It’s going to suck.” Then the person I’m telling responds with “Oh my god, I’m so sorry. Let me know what I can do to help. We’re here for you.” I have no idea what to ask them to do. It’s really nice to have the offer – and there is nothing else anyone else can say – but unless you have some cancer-kicking magic machine in your purse, there isn’t much I’m going to ask you for.
Other than that, I tried to go about my normal business. I worked a lot. Went out and saw friends. No one there knew what was going on. Went to a party with reporters late into the night and a friend’s birthday party the next. It was all very normal. But in the back of mind, I couldn’t stop thinking: this is going to be the last time I do this for a while. I’d better milk it while I can. But I snuck out of the bar early from a colleague’s birthday. I wasn’t in the mood to do a round of “goodbyes.” I took the rest of the weekend to relax. Tried to keep my mind on watching TV and doing a little work. It seemed to actually work.
The last two weeks have been doctors. Some in DC, some in Richmond. Conflicting opinions and differing recommendations for treatment. I don’t like that part — I want to know what to do.
The hospital visits for opinions and reviews are surreal. I’m a bit younger than most cancer patients and I stick out like a sore thumb. On one visit I checked in at the desk in the cancer center. My full name is Jesse Franklin Ferguson. The person checking in next to me was Franklin Ferguson. He was born in 1937. We met one person there who my dad had known 10 years ago. He had spinal cancer and lymphoma. I know I should have felt bad for him, but in truth, it also reminded me that my situation could be worse.
We’ve had some good news: The cancer hasn’t spread anywhere outside my head and neck. I feel a little better because of that. Over the five days it took for the scan results to come back, I had these irrational — though explainable — concerns. Every time any part of my body hurt, I was convinced the cancer spread there. I stubbed my little toe one day and 3 days later was convinced the pain in my little toe was cancer spreading. I’m glad that’s over.
Now starts the hard part: Surgery, recovery, treatments. It could be months. I’ll be back to work when I can be, but it will be a while. I’ve got a good team at the office so they can handle things without me. I’m not worried about that. We will see how well I handle things without them.
I’ve created this blog because I’m going to want to share what’s going on with friends and family and this seems to be the best way to do it.
I’ll be taking leave from my work sometime in the next 2 weeks to begin the treatment. If I can’t give quotes and interviews about Congress all day, I’ll need something to write and talk about. I guess this will be it.