The Human Side of anti-EGFR Therapy
After coasting yesterday and letting Tami Boehmer do all the writing, I figured it was time for me to write a real post since it has been a while. I’ve already written about the science behind my anti-EGFR therapy here. I think what I wrote is already a fascinating scientific story and hopefully it becomes even more so in the future after I see how successful my current experiment has been… 😉 BTW I do feel somewhat validated by this brand new AACR-2015 poster from ImmuneXcite just presented this week which shows the power of combining an innate immune system activating beta-glucan and cetuximab, in their case in the same molecule – big Mad Scientist thumbs up to that great idea!
Today I wanted to switch gears & focus more on the “human side” of anti-EGFR therapy. As you know, I am both a scientist and a patient. It is a unique duality which I have to constantly psychologically juggle. I juggle it day-to-day e.g. as I switch back & forth from days I drive to work versus days I drive to an infusion (ironically literally the same commuting exit – turn left for work, turn right for infusion!). I often have to juggle it even hour-to-hour and at times even minute-to-minute. 7 days a week. Cancer doesn’t take days off or take vacations – inside my own body or inside those of fellow patients in need – many of whom I have gotten to know personally. It’s a lot of juggling but thankfully no balls have hit the ground yet 🙂
Oncology (and medicine in general) is a mixture of both science as well as the human nature impacts of disease. Both are intertwined and today I wanted to pull back the curtain a bit on some of the human aspects of being a patient on anti-EGFR therapy.
Since my last update, my face rash has visually decreased so I’m lookin’ FINE (well OK, at least I look a little bit “less strange” than I did a few weeks ago, “FINE” may be pushing it! 🙂 ) Overall however, the rash has increased in spread and discomfort/pain (getting closer to Grade 3) so I have definitely started towing the line between trying to maximize efficacy with quality of life. I made a firm decision to myself however that I wouldn’t decrease dose or take any treatment breaks at the very least until after I get scans (full speed ahead!). The scientist side of me wants to give his experiment the best chance possible and the patient side of me obviously wants those damn tumors who have been staring at me from CT-scans for almost two years to shrink! Since I know people are wondering, I just met with my oncologist and the next scan results will arrive on May 5. Quite the Cinco de Mayo planned for this year! He also warned me that cetuximab sometimes takes as long as 4 months of dosing to show results (I’ve only done 2), so an impatient scientist may end up having his patience tested….
Aside from the literal aspect of the rash side effect, the most significant impact of starting anti-EGFR therapy was that for the first time ever, I couldn’t walk down the street pretending I’m 100% healthy. Even when I was on chemo & feeling much worse – I just looked a little pale. Since I did not lose my hair, most people I talked to had no idea I was being treated for “currently incurable” cancer. Psychologically that had been a good thing for me – it helped me retain a sense of social normalcy. I did not have to openly talk about my cancer whenever I met someone, just when I chose to. Of course I did chose to talk about it pretty often… but I had significant personal control over when & how it was discussed.
All of that changed when I started anti-EGFR therapy and that was the toughest thing to get used to during the past 2 months. The “double-takes” I would see when I saw a person for the first time after starting the therapy, the uncomfortable averted eyes in e.g. stores, restaurants, kid birthday parties etc etc etc when my face rash was worse… all were completely understandable (in a reversed situation, I probably would have done it myself) but of course I couldn’t help getting the movie “The Elephant Man” stuck in my head. My favorite example was from someone working on our house remodel. The first time he saw me with my rash: “What happened to your face?!” – “Umm, it’s a side effect of a cancer treatment I’m taking right now” – “But you have hair!” – “Umm, different cancer drugs are toxic to different parts of the body, this one attacks skin” – “Well hopefully they caught it early and this will cure you!” – “Umm, not quite early enough” – “Do they at least have it under control?” – “Umm, hopefully” – I was then glad he quickly returned back to the fascinating world of new construction foundation design (no seriously, I find construction fascinating! But that will have to wait for a different post when I have remodel pictures to show beyond just foundations & excavations – windows ordered yesterday, woo-hoo!). As most of you know, I love to openly talk about my cancer and oncology in general (I write a damn blog for goodness sake! ha) but it was weird to have zero control over when/who/how the conversation came up – the rash automatically brought up the topic for me.
I was telling this to a very smart woman and she pointed out a great way to look at it which I think of & gain strength from whenever I now walk down the street, hallway etc. She said “Tom – think of it as a badge of honor showing that you’re fighting your hardest to live no matter what the side effects.” This in effect takes control of a perceived negative and flips it into something positive! Great insight/advice and I have tried to approach it that way ever since.
As I blogged about last winter I was excited to be chosen to be profiled in a national cancer advocacy publication for young CRC patients diagnosed 50 & under (the Colondar 2.0) with the interview & photoshoot scheduled for June. Of course when they chose me, major areas of my skin weren’t being attacked by an EGFR inhibitor. I nervously contacted them to let them know that one of their “models” is now covered in rash. It figures! It took getting Stage IV cancer for me to get my first modelling gig – and then I get covered in rash. All-righty then… I wasn’t too sure if they had that in mind when they chose me. Having learned to take a negative and try to make it a positive – I believe it could actually be a good thing. Many Stage IV CRC patients (and lung & head-neck cancer patients) are on anti-EGFR therapy and many are probably feeling the same social discomfort I was feeling at first. In my view, what better patient advocate could there be than to have “one of their own” be photographed for a national publication? The organizers told me don’t worry about it…… we chose you (regardless of rash) – now get your damn rashy butt to the photoshoot.
Although my face rash has somewhat improved, in terms of the remaining neck/chest/back rash, I am also extremely sun sensitive now. Ironic huh? I live in San Diego. I finally bought a dream convertible last year. And I now need to hide from the sun. Doh! But more importantly, this has led to really the first direct restrictions on “being a Dad” since I have been sick. Yes, I missed a couple of classmate birthday parties while I was on chemo but in terms of “Dad activities” for their childhood, I really was able to participate fully with my kids aside from laying in bed on infusion days. All parents occasionally get colds etc, and I always avoided being infused on e.g. holidays/birthdays – so it was OK. For example, I ran around dressed as Spiderman last Halloween – I just timed it so that it was the day after chemo!
The ever present EGFR rash has now changed that – and I had a big example last weekend. Last weekend we had family visiting us from out of town. The resort they stayed at of course… had a resort pool! Woo-hoo! So we spent a lot of time at their resort with them, us having a free resort staycation! I LOVE pools & I have always played in them for hours with the kids whenever we go on vacation. Not this time. First of all, it was blazingly sunny in the pool and I needed to stay in the shade. Secondly, although I have treated my face as a badge of honor there are limits – let’s just say no one wants to see my chest or back right now within 2 hours of eating. Ewe. Even badges of honor have limits. So I sat on the side and watched the two other Dads play with our kids in the pool including the kid life milestone event of them learning to play “Marco Polo” for the first time. Marco Polo is a major summer childhood memory for me so this really hit hard being an observer of this milestone & not a participant. Once again, because of EGFR, I had to acknowledge my cancer in public and for the first time miss out on a key childhood event and memory making moment while everyone else could play in the pool. Psychologically, it was very tough.
But also something wonderful happened. My little girl came out of the pool so that she could snuggle with me & warm up. The magic of life is that if there is love, it will find a way around whatever little barriers that may arise in life. Maybe there won’t be a childhood memory of Dad teaching/playing Marco Polo. But there will be a childhood memory of Dad being there for her to snuggle her warm after a full day of pool fun. “Being there for a kid” in their childhood is the single most important job a Dad has – an EGFR inhibitor can’t take that away and I don’t plan on letting cancer take that away either – no matter what it takes.
Here are two pool pictures from 2013 (recent chemo) and 2015 (on anti-EGFR therapy). In both of them, my girls are having fun hanging out with a “sick” Dad. It may not be a “normal life” but we’re living the one we’ve been given with as much love & childhood fun as possible – treatments and cancer can’t take that away if we refuse to let them.