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.
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.
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…
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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: