First, Merry Christmas, Happy Hanukkah, Kwanza, Winter Solstice, Boxing Day, Yule and of course, Festivus (and National Bacon Day, which is 12/30).
Welcome to another edition of “My Colon is More Interesting Than Yours”, which by the way, could topple Cards Against Humanity as the next disturbing party game.
Let’s start with a super quick recap of where we left off on the last C-Note in late September . . . diagnosed Oct 2013 stage 4 colon cancer, check . . . had 70 rounds of chemo, check . . . chemo stopped working, check . . . need to find an experimental trial, check . . . had 30+ rounds of phase one immunotherapy trial drugs, check . . . zapped with rounds of radiation, check . . . immuno stopped working, check . . .shit . . . . went back on the original chemo for another 12 rounds, check . . . that stopped working right before Thanksgiving and tumors started to grow, check. . . fuck . . .hey wait . . . ahh SHITBALLFUCKRATDONG!!
Ok, now we are all caught up and that left me right back in my “new normal”, treading frantically in the soup of mind-numbing fear and panic mixed with splashes of cockiness and bursts of drunken optimism. I’ve said it before and I’ll say it again, you’d be surprised what you can get used to.
As terrible as that may sound, it sure as shit beats the alternative. They use the acronym NED with cancer, which stands for “No Evidence of Disease”. Those with cancer all dream for the day that NED may give us a smile and ask us to join his “in-crowd”, because, you know, NED is clearly the coolest muther fucker around. So at this point in time, picture NED as “Jake” from Sixteen Candles . . . rich, good looking, Porsche, king of the school etc. To continue that analogy, I’m like the Anthony Michael Hall character, kinda cool on the inside, but a geek, and Jake is still way out of my league. So as I wait for NED to give me a wink, I continue to hang with my good friend SAL (“Still Alive and Living”, I just invented SAL by the way). SAL and NED are friends, and the longer you hang with SAL, the better your chances are that he will put in a good word for you with NED (and eventually have NED give you the keys to his dad’s Rolls Royce so you can take the prom queen home . . .come on, you all saw the movie).
Anyway, so no more chemo . . . again . . . and we needed to start looking for a new experimental trial . . . again (everything I’m involved in now is on the cutting edge and experimental, very cool and very terrifying). Its funny, you would think hearing that I need a trial for a second time would have been devastating, cause, you know, if you don’t find something . . you kinda die. Yet bizarrely, I wasn’t devastated by this news (upset yes, devastated no).
I’ve had the same oncologist for the last 4 years at Sloan, and luckily, he is also the rock star at the center of much of their new groundbreaking trials (how many of your doctors have been interviewed by Katie Couric?). My trust in him is what allows me to live my life. The first day I met him he told me to live my life normally and only think about cancer on the days I came for treatment. He said it was his job to think about it all the time, so there was no need for both of us to do it. He also told me NOT to get on the internet (I assumed he meant to read about cancer and that surfing porn was still ok). If I had any questions on anything, he would answer them. That seemed like a reasonable distribution of effort since I wasn’t getting paid to think about cancer anyway. That was also the beginning of my Han Solo flying into the asteroid field approach to cancer . . . “Never tell me the odds”.
Now being the pet lab rat of one of the top cancer doctors in the world makes that kind of trust pretty easy. He has a solid 4 year history of keeping me alive (and working, skiing, playing tennis, drinking, etc), so I walked out of his office on Friday 11/17 fairly confident he would pull another rabbit out of that bag of snakes. I should point out that he is also very practical. When we asked if he could guarantee I’d get in a new trial, he responded simply “there are no guarantees to any of this”. He’s a straight shooter and knows “hope” is not a strategy. He said he would put his team to work getting me a slot in something that he felt would work for me. On 11/28 he called with two trial options.
One of these was a back-up option because he was really optimistic about another one, but the spot was harder to get. He landed me that slot on the day I came in to discuss the other trial. Just as a point of reference, I am also very blessed to be where I am as far as trials go. The “trial” process is crazy and ridiculously difficult to navigate, and its not uncommon for patients to have to search for trials themselves. Also, you typically move doctors with each new trial. I am extremely lucky to have a team at Sloan matching me into new cutting edge treatments and also being able to keep my primary doctor. This is a very big thing, especially since we’ve already established I’m not terribly bright on the cancer front. I should pause to say although I have 100% trust in him, I did get my case reviewed by the head of the colorectal team at MD Anderson in Houston a couple years ago (he was a friend of a friend). He knew my doctor and his opinion was essentially, “your doctor is a rock star, just do what he tells you”.
So the last week has been a flurry of pre-trial tests . . . blood, urine, EKG, cat scans, liver biopsy and the ability to balance naked on a stool in a strange ballet plie’ stance (I’m not sure why they keep asking me to do that last one, its getting weird, the crowd gets bigger each time and they already have the pictures from the first time). So the last test was the liver biopsy on Monday and I started my first round of the trial this past Tuesday 12/19.
I would love to provide all the technical details about the trial, but as usual, I didn’t read the packet. For those interested, the drug is called INCAGN01876 and its ½ phase GITR trial. My doctor is pretty jazzed about it. GITR isn’t a drug, it’s a protein, and the trial has to do with making super immune cells that cancer cells can’t disarm (which is why your immune cells can’t normally kill cancer). As my cousin John put it, my immune cells are now “strapped”.
GITR is pronounced “Git-er”, which unfortunately meant all I could focus on while my doctor was explaining the trail was a big redneck version of my immune cells screaming “lets git-er done fucker!”
Actually, I do know a bit more. When I stated the last experimental trial I had to spend 3 days in the hospital to make sure the drugs didn’t kill me. That short stay quickly transformed me from the cocky swaggering dickhead you see on the outside into the sniveling, sobbing, pleading with God, snot running down my face dumpster fire of a human being that I try to keep hidden on the inside. Luckily, this new trial does not require a hospital stay, so the nurses at Sloan will be spared my nighttime wailing. I’m also assuming that means the chances of the experimental drugs killing me are relatively low (and since dose one is already in and I’m still alive, that is partially confirmed). WIN WIN. Second, the other trial was weekly, which is pretty hard and just a logistical time suck because Sloan is like waiting at the DMV . . . except with more needles and puking. This new trial is once a month. Let me say that again, once every four weeks!! I can’t even convey how HUGE that is (please pronounce that without the “h”). I’ve had chemo or immuno drugs every week or every other week for over 4 years, so I’m actually having a hard time getting my head around this. So pretty good upgrades . . . ya know, as long as the drugs work.
The side effects have also been minimal, which is really nice. Got the first treatment on Tuesday and went to work on Wednesday. I’m a little beaten up, some from the drugs I suppose and some just from spending 8 hours at Sloan on Monday to get a liver biopsy and 11 hours there on Tuesday for the first treatment. Keep in mind, I’ve had 112 rounds of chemo/immune drugs over the last 4 years and have plenty of regular “issues” I have normalized. Feeling “ok” for me is a relative thing. The new drug didn’t make me stop breathing, cause a severe allergic reaction, double me over with shooting pain, make me throw up on myself or feel like my heart was about to explode, all of which I’ve had in the past with new drugs. So in the grand scheme of things, this new drug is cooler than the other side of the pillow!
I will also say I am NOT having a “this is the beginning of the end” feeling about this new trial, which may not be justified, but is still nice. I’ll explain.
Over the last four years there have been a handful of significant times when I truly felt like “this was the beginning of the end”. A couple of these were mental and a couple were just physical. Obviously, the first was when I got diagnosed in October 2013 and the doctor told me to “get my affairs in order”. Yeah, that phrase turns shit very real, very fast. You then wallow in the “I’m going to die” swamp for a bit, until you decide that’s a shitty option and figure out how to move forward (in my case that was going to Sloan) . Then, about two years later around Christmas week of 2015, I got extremely sick and lost about 25 pounds in 10 days. It got to the point where I couldn’t even stand without my legs giving out and falling over (picture that pale, cancer skeleton shivering under a blanket). I can vividly remember laying there in the middle of the night crying and thinking “that’s it, there is no way you’re going to bounce back from this one you delusional fuck”. The next two times came in pretty quick succession. First, when the chemo stopped working in mid 2016 and I was told the only options were now “experimental” trials. That was pretty crushing because I viewed those trials as a game nobody really wins, like when my fraternity would sell raffle tickets in college to win a new VCR . . . a VCR we never intended to buy or give away (although an excellent way to generate keg money). And the last time was in the hospital during the first dose of the last experimental trial drugs. It was about four in the morning, I could barely breath with the pain, they had just put in a catheter, I was sobbing and begging God for help and I suddenly became very sure there was no way in hell I was ever leaving that hospital. What was really scary was Courtney was sitting right next to me and I could see in her eyes she felt the same way. Luckily, and as usual, I was wrong.
This is not to say that the rest of the time I’m all “Cool and the Gang” with my current situation, I am definitely not. Cancer blows on so many levels its not even possible to convey. I do try to project as much positivity as possible because it does help me keep my head in the game. Staying positive in front of others helps me stay positive on the inside and keeps that internal dumpster fire from burning the joint down. It also lets me compartmentalize the situation by thinking of it as something more abstract and outside my current being when I discuss it with others. My theory is the stronger I appear, the stronger I remain. And to be quite honest, somebody HAS to be the one to blow the Bell Curve . . . why NOT me? Soon or later, NED and I are going to slam some tequila shots as best friends, with a big toast to SAL for bringing us together.
Well, I need to do some Christmas shopping now so we’ll wrap things up. All this cancer nonsense over the last couple weeks has put a serious dent in my holiday cheer activities (I have had only ONE boozy holiday lunch so far, which is incredibly tragic).
I’m going to skip the usual “recap” and just leave you with the important aspects of this note. . .NED . . .SAL . . . and after reading this, I apparently cry in the middle of the night a lot. WTF?
By the way, thank you to all who encouraged me to get off my ass and post all of these emails on www.RobsCNote.com . Although I haven’t written a new C-Note since the end of September, I get 50-100 new people reading the site per week, which is bonkers. Lots of folks with an ass fetish I assume (and when you “assume”, you make an “ass” out of “u” and “me”, man that works on so many levels). I have also gotten a ton of wonderful notes from people stopping by the site, so thank you for those as well.
Anyway, happy holidays and here’s to a wonderful 2018 for everyone!
Head Lab Rat, Keeper of the Ass Flame
Welcome my friends to another edition of the C-Note. Its been quite a while since my last update, about six months actually. First, let me apologize for that empty hole I know you are all feeling down deep inside, perhaps near your own colon. I understand its difficult to get through the day without reading about my cancerous innards, but after 4 years, I try to only send a C-Note when I have something meaningful to say (unlike in person when I spew meaningless shit fast and furiously).
Now for those feeling the anxiety building because I’ve clearly gotten very lazy in writing these, fear not young sparrows, I have a solution. I finally put all the back issues of the C-Note on www.RobsCnote.com. Now you can pretend its Oct 2013 again and relive all the past C-Notes in their full ASSTASTIC glory. You’ll laugh, you’ll cry, you’ll wonder why the shit you’re spending valuable time reading about some guys colon. There’s even a podcast interview I did last month for all you diehard colonheads. In full disclosure, I only listened to about 15 minutes of the interview, which was enough to hear me say “fuck” about 167 times. Doing a shot every time I curse would probably make a very fun, although terrifying, drinking game.
Lets see, when we last left our hero I had just told you that the new, wonderful, global, groundbreaking trial I was part of had stopped working. RATSHITFUCKNIPPLEBALL!
For those that have come in late, or who’s aging minds are now predominantly bong resin and pizza crust, let me provide a quick recap . . . stage IV colon cancer Oct 2013 . . . RATS . . . did 70 rounds of chemo with the two main drugs they use on colon cancer for about 2 ½ years. . . puke . . . became completely hairless . . .WTF . . . both eventually stopped working . . . oh shit . . .seemed like the beginning of the end .. . . oh fuck, get super sad . . . rockstar doctor slots me in as one of 10 people on the planet for a new double drug immunotherapy trial . . . get slightly less sad . . .trial works awesome and shrinks the shit out of the tumors . . . get super happy . . . one “escapist” tumor resists . . . get a little worried . . . blast that fucker with 7 rounds of targeted radiation . . . get happy again. . . get 31 weekly doses of the new immunotherapy trial drugs . . . all cool and the gang . . . things are awesome . . . hair grows back dark . . . 7+ months go by . . . I’m gonna win . . . trial stops working . . .oh shit . . . cancer starts growing again . . . oh fuck, get super dooper scared . . . rock star doctor has a new idea . . . wants to put me back on the original chemo that stopped working and had horrendous side effects . . . wait . . .W.T.F.
Ok, now we’re all caught up.
Now you may ask yourself, why would they give you chemo drugs they already know stopped working? And you may ask yourself, where is that large automobile? And you may tell yourself, this is not my beautiful house. And you may tell yourself, this is not . . . wait, wait, hold on, sorry, broke into some Talking Heads for a moment, but I do ask myself “well, how did I get here” all the time.
So I agree, putting me back on the old chemo sounded like a “sour milk” strategy. You know, you accidently drink sour milk but put in back in the fridge with the theory it will be better tomorrow. That never works, the same way that annoying boyfriend/girlfriend never gets any less annoying the second time around. That said, we’ve already established my education has left me at a distinct disadvantage when it comes to treatment plans for advanced stage cancer, so I figured I’d hear him out (I still think my strategy of keeping the cancer too drunk to kill me is also working, but its nice to have a back-up plan).
His theory was simple. The immunotherapy drugs had not only bought me some extra time that might allow those drugs to work again, it had also changed my body and made it much much smarter. Just to be clear, the “smarter” aspect ONLY applies to my body’s ability to identify and kill cancer cells, so don’t expect me to be “smarter” in any other aspect of my life. For example, I still think tequila shots on a Sunday night are an excellent idea and two bottles of wine and a banana is a perfectly acceptable dinner. Nuff said.
So let’s jump to the punchline. I had a scan about three weeks ago after being on the old chemo for about 3 ½ months and . . . holy shit my doctor is smart. Some of the tumors shrunk, some stayed stable, nothing grew and nothing new. This was awesome news, but unfortunately, I also know its temporary. I’ve played this game long enough to know this chemo will stop working or the side effects will become too severe to continue. Hopefully I can stay on it for a while, but I’m way past standard treatments. My new normal is counting on my doctor to figure out the next breakthrough to keep me alive. Luckily, it appears he paid attention in school and he’s two for two so far on pulling new things out of his hat (I use “hat” because that’s where smart people pull ideas, as opposed to the “ass”, where the rest of us pull ours). He also just resequenced my genes again to begin figuring out what comes next. I’m hoping we go with a bionic colon and liver, think of the possibilities.
Now not to take anything away from my brilliant doctor, but the reality is this is a fucking nerve racking way to live, mainly because I’m pretty sure being dead sucks. Actually, I‘m like 99.99% positive it sucks and something I definitely don’t want to try. I’ve always had a serious case of FOMO (fear of missing out), which is probably why I usually close most bars and parties. Well, FODO (fear of dying out) is way way worse.
I recently had someone ask me what it’s like to “have to” worry about dying all the time. That’s a pretty serious question, which I think I shrugged off with a generic “it sucks” answer because I didn’t want to think about it. After actually thinking about it later, I guess the real answer is that it’s a surreal, semi-constant mixture of fear, anxiety, despair and self-doubt trying to bring you to your knees while you fight to stay on your feet. Questioning whether you are being strong and optimistic or just delusional, being terrified and small on the inside and appearing confident and big on the outside, of being so close to tears most of the time but keeping a smile on your face. And at the core of this emotional shitstorm is a little voice that likes to constantly ask “who will do this if you’re dead” whenever you do anything more meaningful than taking a piss. These “what if I’m not here” scenarios try to bombard you 24/7. Unfortunately, I’ve had four years to make a pretty comprehensive list of those scenarios, from the big ones . . . will I see my kids grow up, see them get married, meet my grandchildren, get to be a cranky old man with my beautiful wife, even see next Christmas . . .to the crazy little ones . . . who will know how to log into Apple TV if I’m not here, who’ll get the broken pin out of the air pump for my boys, I’m the only one who knows how to work the generator, I’m the only one who knows where the receipts are for the kids annual ski rentals. It literally permeates everything you do at times . . .every action creates a scene in your head where that action takes place, but you’re not there. It’s a pretty heavy bag of rocks to lug around at times, and damn it makes you tired. . . like 6 days in a comp’d suite in Vegas tired. I get that these things will get done if I’m not there, but DAMMIT, I want to be the ones to do them.
Now even with that, I still consider myself very lucky at this point despite my big weepy bag of boohoo whaa, whaa heavy rocks (maybe I should call myself a whaaaambulance). My doctor has referred to me as an “outlier” in the past due to my reaction to most treatments. I can tolerate a lot and my body is usually pretty cooperative about jumping on the “cancer is an asshole, lets kick its ass” bandwagon (I picture my immune system like a drunken bunch of hooligans roaming my body looking for a fight). Also, not to get all fucking Stuart Smalley on positive affirmations, but I do believe my mind and attitude play a big part in how my treatment has gone. Despite cancer trying to trip me up at every turn, I just keep trying to live my life as if its not there as best I can. This attitude is actually a bit of an issue with the nurses at Sloan. They get pretty concerned about me at this point because I can now “normalize” most things and move forward (my scale for feeling “good”, “bad” and “pain” is incredibly cocked up). For example, and think I mentioned this in the past, Sloan called to say I had to go to the emergency room immediately because a scan showed I had pneumonia and an infected mass in my lung. When I got the call I was just finishing riding an hour on the bike at Cycle for Survival. They were a bit shocked at what I was doing, and I said I just figured I couldn’t breathe because I was out of shape, so I just kept riding (you’re a hooker? Jesus I forgot, I thought I was just doing great with you). It turned out I also had a blood infection that put me on IV antibiotics for 16 days. Now I’m not trying to sound all Patrick Swayze in Roadhouse with a “pain don’t hurt” attitude, Dalton remains one of the great bad asses of all time. Pain fucking hurts A LOT, but you can get used to just about anything if you do it long enough, and I’ve been doing this a very long time.
I guess since its been so long I now get a lot of people asking me if I’m in remission or cured (I actually got a “remember when you had cancer” not too long ago). That would be awesome, but unfortunately, the answer is also a big negatory good buddy. I still have stage IV cancer, lots of tumors and need to continue to get treatment constantly. Its funny, I think because I look pretty normal (or at least as normal as I ever did) and still act like the social chair of my fraternity, the seriousness of the situation gets lost a bit when people talk to me about it. I had someone tell me recently that any of us could be hit by a bus tomorrow, so everyone has the same situation as I do if I really thought about it. Well, ok, I can see where you are trying to go with that, but unless you have a psychotic bus driver circling your house trying to kill you every time you walk out the door, its not really the same thing (and if you do, you live in a really shitty neighborhood and should move). People say weird, sometimes really offensive things because they want to try to make a connection to me on the cancer level, which is fine. Why should I have exclusivity on saying dumb shit? Cancer is an incredibly hard thing to discuss, but its also something that people have a million questions about. Those that know me know I have no problem talking about it, but I will caution you as I have before, not everyone with cancer feels the same way. Words are very powerful and echo in people’s minds for years, so think before you speak (damn that’s just solid life advice right there kids, cancer or not).
Here’s an example of some words that have haunted me for 3 ½ years. I had to go see a hematologist at Sloan to get on blood thinners because I got a blood clot in my lung about 6 months after I got diagnosed. Cancer and chemo both can cause clots, so this is pretty standard. I met the doctor, he was a royal dickwad right out of the gate, but you only see these guys about twice a year, so I figured I could deal with it. As I’m getting up to leave he feels the need to tell me again that there’s no cure for cancer. “Yeah, I think I heard that somewhere, but thanks for reminding me again”. I think there may have been an “asshole” at the end of my response, but it was so long ago, who can be really sure (there definitely was, I’m 100% sure). Then as I’m walking out the door, perhaps in response to the alleged “asshole” comment, he goes “you know, I’ve had patients in your situation live maybe 3 years, sometimes even a bit longer”. It was like being hit by a car. I kept walking, didn’t turn around and that was the last time I saw him (when they called to make my next appointment I suggested there was the very high probability of physical violence on my next visit, so I immediately got a new doctor and he left Sloan very soon after). My point is his words have echoed in my mind ever since. . . especially as I cruised past 3 years and am winding up my fourth. Dickwad! I can’t believe he got that power over me.
Damn, this is getting pretty long. I was just going to tell you a funny story about me screaming and crying as a Sloan nurse gave me permanent tattoos for radiation targeting, but I should wind this down. Here’s the quick gest of that story. First, its not a normal tattoo machine that just puts a small dot on your skin as I expected. Its actually a massive needle filled with ink that they stab in and swirl around like they’re stirring a fucking witches cauldron (and they’re stabbing you in the chest, stomach and ribs, all Pulp Fiction like, or that’s how I remember it ). Second, this process is a million times worse if you’ve been out drinking until 2:00 a.m. and the stabbing starts at 7:00. Third, and less important I guess, the nurse in charge of this does not wear a leather Harley Davidson vest as expected. It was a very disappointing experience on many levels.
So LETS RECAP and let you get back to your lives shall we. . . my hair is dark and awesome . . . ASSTASTIC, add it to your vocabulary today. . . or Dickwad, which I’m bringing back . . . “escapist” makes tumors sound unnecessarily cool . . . my foul language has apparently increased exponentially . . . I don’t fucking give two shit fucks . . . . ride the swan (you need the podcast for that one) . . . FODO blows . . . sour milk, like old flames, never gets better . . . don’t get you next tattoo at Sloan Kettering . . .www.RobsCNote.com, better than pornhub (well, not really even close) . . .SUNDAY RUMDAY . . . I’m still alive and kicking . . . RATSHITFUCKNIPPLEBALL.
As always, thanks for the prayers, drinks, food and general good vibes. You all make this so much easier and fun, I think I’ll just keep doing it for a few more years.
On a serious note, for those with kids that may know my kids, please don’t share these with them. My kids know all about my cancer, but I don’t want them reading C-Notes, still too young.
Travel forward, travel light.
King of the Lab Rats!
P.S. If anyone wants to say maybe grab a few drinks, perchance find out where that doctor lives and PERHAPS swing by late one night and say hello, I’m completely down with that! Dickwad!
Hey Kids, not really a C-Note, but I was interviewed for a podcast series called "10,000 No's with Matthew Del Negro". Now, I have a pretty high opinion of myself as we all know, but Matt is the type of guy that makes you feel like an ugly hobbit just standing next to him, but he's so awesome you don't even mind! A really great guy and a lot of fun to be part of this.
Below is the info if you want to have an audio version of my ass story, he also makes me sound pretty cool in the write up (damn, he's smart and good looking). Also, apparently I felt the need to say "fuck" every 4th word in the interview. Go figure, Montclair State education at its finest, and an English degree no less!
In full disclosure, I only listened to about the first 15 minutes. Its really hard to hear yourself.
At the age of 42, Rob Whitaker was diagnosed with Stage IV Colon Cancer. Not one to accept this news passively, Rob chose to wage his own war, with biting humor and a unique perspective on how to manage pain and setbacks. Rob's life with his wife and kids is enviable to most because he has chosen to live it to the fullest. Honest, tough and funny, Rob gets down to the brass tacks and talks about his hopes, his strategies and his fears. I'm not the only one inspired by Rob's words of wisdom, Nurses from Sloane Kettering and Doctors of Nursing up and down the Eastern seaboard have taken it upon themselves to print up the periodic email updates he sends to friends and family, and disseminate them to cancer patients and their loved ones as a guide of what to expect and how to handle the road ahead. It is my belief that these emails will some day become a book, which will inspire and encourage future cancer patients, their loved ones, and anyone looking to overcome any insurmountable obstacle.
Listen to Ep 5, Rob Whitaker: Humor over Cancer from 10,000 "No" s with Matthew Del Negro in Podcasts.
Actor Matthew Del Negro (The Sopranos, The West Wing, Scandal) describes his career as being told "No" for a living. Here, he gets up close and personal with top-shelf folks from all walks of life about the 10,000 "No" s they've had to endure and struggles they've had to overcome on their journey to where they are today. Inspiring, raw, honest and funny, this podcast will help you see that the people you think have "got it made" put their pants on one leg at a time, just like you.
When we last left off I had started a new experimental drug therapy that was supercharging my body’s ability to kill cancer, but had also disfigured me terribly, forcing me to leave the woman I love and stalk the shadows as a tortured immortal, with new powers and a rage that could . . wait, wait, wait, that definitely doesn’t sound right. Yeah, that’s probably “Deadpool” again. Sorry.
Hmm, let’s see. For those playing the “Robs Colon” home edition, let’s take a look at the big board and check the numbers. We’ve got . . . 70 rounds of chemo (which blew) . . . 31 rounds of experimental immunotherapy drugs (this blew less) . . . 5 rounds of high dose radiation (would not have been too bad if I wasn’t ferociously hungover each time) and one very strange psychiatric appointment. Let’s start with the psych visit and work backwards (it will make sense later).
For the last 3 ½ years, Sloan Kettering has been trying to get me to go see the shrinks in psych and I completely understand. Cancer causes a very real fear of dying, a real fear of dying causes high levels of anxiety, high levels of anxiety can be alleviated by taking Xanax, the people with medical degrees and goatees who hand out Xanax like M&Ms are lonely and like to talk, they keep these folks over in psych, THEREFORE, you get cancer, you go talk to the shrinks in psych and get your M&Ms.
I GET IT, I just had a problem with the whole “tell me how that makes you feel” talking part. Yes on Xanax, No on talking. I’m really more of a crying on the inside kind of clown, but damn, I do like me some Xanax (don’t judge, I have cancer after all, and it’s like a pill version of a big glass of wine). So for 3 ½ years I’ve been begging my regular doctor for the occasional handful of Xanax that I then ration like Elaine with her sponges on Seinfeld (is this anxiety attack “Xanax worthy”). This is not a good process, so I decide I’m finally going to go see the shrinks and get a proper big boy prescription. Just to be clear, this is NOT because I have decided that denial and booze are no longer effective coping tools. They work quite well I assure you. The problem is that one of them only works if you get anxious during appropriate drinking hours (after 4:15 on weekdays, after 3:00 on weekends, 1:00 on weekends if doing lawn work/watching sports, after 11:30 any day while on vacation, after 9:30 on Thanksgiving day etc.). I also realized they keep the shrinks right next door to where I get treatment anyway, so it’s an easy trip for me to grab some goodies.
So since I’m finally going to visit the folks at psych, I decide I’m going to go all the way. I gonna let them to psycho-babble the shit out of me. I’m gonna walk in there, lay on that couch and pour my heart out. I’m gonna be 100% raw, I’m gonna cry, sob, scream, tell my darkest fears, punch pillows and do all those things like people do in the movies. He is going to stroke his white goatee in his tweed jacket and use his massive psychiatric powers and make me feel like a new man. This is gonna be awesome . . . except apparently my shrink hasn’t seen any of those movies and doesn’t know how this is supposed to go. I am in and out of the office in 10 minutes, no crying and really, not much talking at all. First, there is no couch, so I’m instantly disappointed. Second, she’s early 30’s and has that crunchy “I’m so smart it doesn’t matter what I wear” vibe thing going. I’m crushed. Clearly there will be no soul bearing today . . . I think we both knew that the minute I stared too long at her worn Birkenstocks and white socks. We’re adults, this clearly is not a fit, so I just boil it down to one sentence of 100% honesty so we can move this along; “cancer makes me think I’m going to die all the time, that causes a lot of anxiety, Xanax helps the anxiety, I need a prescription for Xanax”. She punches the prescription into the computer and we spend the next 9 ½ minutes pleasantly talking about the ridiculous amounts of different treatments I’ve had (she’s kind of fascinated) while I try not to look at her feet. She’ll keep filling the prescriptions if I agree to come back again sometime in the next 3-4 months. DEAL! I'm so pleased I don't even point out she works 4 blocks from Bloomingdales.
For those paying close attention to my verb tense in the beginning of this email, you’ll note that I referred to the immunotherapy as “blew”, as in past tense, meaning I am no longer doing it. Yes, it worked awesome for 7 months, right up until the day it just stopped working. This happened a couple weeks ago and I wrote a pretty dark C-Note about it. Ironically, I also wrote another C-Note right before I found out it wasn’t working about how awesome I was. You may be wondering why those don’t sound familiar. Well, ya see, I actually write a lot of C-notes, I just don’t send most of them. I write them for my benefit, but don’t sent them for your benefit. Here is how I view these.
An update every once and while is fine. I usually send these just when you are starting to wonder if I’m dead or not, which seems like the right frequency. Continuously blathering about my ass cancer (still funnier than saying colon cancer) is just too depressing for words. As you know, I don’t read or watch anything about cancer. I get all my information from my doctor, which works great for me. Now in full disclosure, my doctor is a rock star in the cancer world and one of a handful of global experts on new cutting edge immunotherapy drugs for colon cancer (he was just interviewed by Katie Couric two weeks ago). I was just lucky and he has been my primary oncologist since the beginning, so my one source of information is pretty friggen solid. Most people don’t have that luxury, which is sad. What the hell was my point again? Oh yeah, having cancer is fucking boring and depressing, and the only thing more boring and depressing is reading about other people’s cancer all the time. Thus, my “write many, send few” philosophy of these C-Notes.
So getting knocked out of the trial was a massive blow, in truth, it was pretty devastating. I had been in the trial longer than anyone at Sloan (or the US). In my mind this was my last shot and anything short of a cure was a death sentence, game over. Pretty dramatic, but that’s how I was viewing things. Now its been a couple weeks and I’ve had some time to get my head around it, so I’m much better. My doctor also doesn’t really seem to be all that concerned over it, which made me feel WAY better. He just looks at it as a another path in this journey and keeps telling me I am still doing great. This is pretty reassuring because Sloan docs don’t tell you things just to make you feel better, its not how they operate. They are solving a problem all the time, simple as that. I actually had an extra biopsy on Monday because they want to study why this worked so well on me and also what caused it to stop. Hopefully my cells will help them figure this out a little quicker (this also got me huge brownie points with the team at Sloan, a little “let’s keep Whitaker alive” incentive).
So starting next week I’m back on chemo every other week again while we figure out the next move. This is the allergic to cold/microwave everything, numb fingers, bottle attached to my chest for 48 hours chemo . . . not the bald like a baby mole rat, heart palpitations, diarrhea all the time chemo. I was supposed to start chemo this week but am pretty sick (just a virus). Its funny, although immunotherapy helps your body kill cancer, it actually suppresses your immune system in other areas, so you get sick a lot. Since starting the trial, I’ve had the flu, an RSV repertory infection, was on IV antibiotics for 14 days for a staph infection and have grade one pneumonitis in my lung (from the immunotherapy, that happens). 70 rounds of chemo and not even a sniffle, go figure. Stupid cancer, why can’t I just kill you with booze like my brain cells.
Yes, chemo sucks, but when you really think about it, the choice between chemo and death is pretty easy. Chemo, yes please! And my doctor is convinced he’ll have something new to try in the future, just like this last one. Ya know, I’m starting to suspect there’s really not any upside to this whole cancer scam. In truth, I really can’t figure out why so many people are doing it. Its expensive, makes you feel like shit, super depressing, extremely terrifying, screws up your social schedule, makes you get tons of needles. Shit, I definitely should have read the brochure much more carefully. I HAVE been told it does make me more interesting . . . so I got that going for me, which is nice, but I still think I’m getting the shit end of the stick. I could have bred donkeys, collected rare beetles or done close up magic. All of those things would have made me interesting while also not trying to kill me. Definitely should have picked the donkey breeding over cancer. Well, 20/20 hindsight and all that. Maybe next time.
So that’s the big news, what was old is new again. Lets wrap this up and let you get back to your non ass cancer activities . . . Chemo is the new black . . . Birkenstocks and white socks are just tragic, no exceptions . . .when begging for drugs, honesty is the best policy, except for the police, ALWAYS lie to the police . . . its never like it is in the movies . . . my hair is still awesome . . . cancer does keep things interesting . . . breeding donkeys would make you an “ass farmer” . . . don’t knock microwaved wine until you’ve had it . . . you don’t get ass shaped balloons at Sloan when you hit your 100th colon treatment, I asked . . . denial and booze, what can’t be accomplished. . . and lastly, Deadpool, just fucking awesome!
That’s it for today kids. Every day brings us all new challenges, just keep marching forward, be thankful for what you have and don’t drag the baggage with you, its fucking heavy.
Travel forward, travel light.
By the way, for the cancer groupies among you, here is the link to my doctors interview. My guy is Neil Segal. I also know Tom, the “patient advocate” on the panel https://charlierose.com/videos/30195
It’s been a while. When we last left our hero he had been diagnosed with very advanced cancer. It had spread to multiple locations and there was little the doctors could do. He then agreed to take an experimental drug that would not only cure his cancer, but would give him new powers beyond his dreams. In exchange, he would have to . . .
Wait. Sorry, that wasn’t me. That was Ryan Reynolds in Deadpool (which is a great movie in case you haven’t seen it).
So a lot has happened to me since the last C-Note. I know these can get kind of long at times, so for those with something better to do, here is a quick summary and you can get back to your life: Chemo stopped working over the summer, cancer was going to kill me, got into a crazy new experimental trial, seems to be working, still alive. Hey, that does sound kind of like Deadpool. For those with nothing important to do and a few minutes to kill (and I know that’s 99% of you), below is the story.
So the last time we spoke I had just gotten a scan in early April, and the results were not great, although I did try to spin it as kind of positive (I do that for me more than for you). The cancer was growing and the chemo was becoming less effective. My CEA levels were also up over 100. Now for those that don’t spend their lives riveted by these emails, here is a quick tutorial on CEA. CEA is a protein that is generated when your body makes colon cancer cells. The higher the number, the more cancer. When I first got diagnosed in Oct 2013, my CEA was 1,400 (this was catastrophically high, apparently I was going for a record). With chemo over the last 3 years, we had driven that down to about 30, which is fantastic. That was pretty low and meant the cancer was fairly stable. So we’re at 100 in April, not too great, tumors are growing again a bit, but the doctors decide to continue with the chemo. My theory was that they really didn’t have any other options at that point. There have been huge breakthroughs in the treatment of cancer with immunotherapy drugs (drugs that get your own immune system to kill the cancer); however, they still have not figured out how to get it to work on colon cancer. It’s not that the colon doctors are sitting around smoking dope all day and not working on it, my doctor has been running immunotherapy trials to try to figure this out for about 4-5 years. The immune system in the colon just works differently than everywhere else in the body and that makes it really hard. Of course, since I have colon cancer, that’s the really hard one. Figures.
So back to the story. I get my next scan in early July and I’m expecting the worst . . . and as usual, cancer deliverers in spades.
After 70 rounds of chemo they tell me it’s just not working anymore. Things are growing more steadily and there is no point to continue with the current treatment. In addition, my CEA levels are now climbing like crazy and are already at 300. So let me get this straight. Body making lots of cancer. Drugs that kill cancer no longer working. FUCKBALLSHITCOCKSUCKFUCKINGCANCER!
So the cancer is partying like its 1999 and the chemo police I’ve been using to shut that party down have all checked out for donuts. Although I’m now out of chemo options, my doctor then tells me there is a brand new immunotherapy trial that just opened. Hmm, haven’t you been telling me for like the last 3 years you haven’t gotten that to work yet? Anyway, there is only one other person in the trial and my doctor is very excited about the new “science” behind it. Ok doc, sounds interesting, is it working for the other guy? Sorry, too early to tell. Of course it is, why would it be that easy.
Apparently it’s the first time they are going to test combining these two experimental immune drugs at the same time. As he’s telling me this, I’m actually picturing what my funeral will be like, so this part of the conversation is a bit blurry. I snap back to attention when he says it will take about a month of testing to see if I “qualify” to get into trial. Wait, let me get this straight. We don’t even know if I can get into this trial that’s not going to work anyway? WTF? He seems pretty confident I’ll qualify because it’s almost like they wrote the criteria for me. You need to have had an oil tanker load of chemo pumped through your veins (check), have that chemo stop working (check, and SHIT!), have your tumors make a bunch of CEA protein (check and climbing) and still be in perfect health (I think they are amazed that the cancer or chemo hasn’t caused me to keel over in my soup yet, so this looks positive as well). Now it’s on to pet scans, cat scans, liver biopsies and removing about 30 gallons of blood for testing. The way I see it, you need to be able to qualify as an astronaut while still having advanced stage cancer to get in this thing. “We only want the healthiest patients so we’ll know it was the experimental drug that killed you and not something else”. They didn’t actually say that out loud, but I know its what they were thinking.
Now this is probably the worst period I’ve had since getting diagnosed. I’m sitting there facing two really shitty options that both probably end the same way. Outcome #1, I DON’T qualify for the trial, there are no other real options, and the cancer house party that’s now raging in my body continues until it burns the house to the f’ing ground. That blows. Option #2. I DO qualify for the trial, but like every other colon immunotherapy trial they’ve done, it doesn’t work. See “cancer house party” result in outcome #1 and “that blows” comment.
I have to say, facing the reality of two shitty outcomes . . . “definitely going to die” OR “most likely going to die”, is pretty exhausting. Do you continue going to work and pretend nothing has changed? Do you just stop trying and curl up in a ball? Do you create a bucket list for the time you have left? Do you buy the kids a horse (how cool would that be)?
As you can probably guess, and although a horse would have been awesome, I decided to ignore it, go to work, enjoy my phenomenal family and just hope to get into the trial. When the trial doesn’t work, and I know it won’t, I’ll jump off that bridge when I come to it. Of course I also keep trying to do my part to kill the cancer with beer and rum (thus the invention of Sunday-Rumday). I’m not sure how effective this alcohol treatment is, but it sure as shit is a lot more fun than chemo. Courtney and I did make a list of all the passwords and financial account info she would need “just in case”, but that was pretty much as far as we went. I secretly knew this had nothing to do with my heath and was more about Courtney’s pre-cancer plan to bump me off for the insurance payout.
Fast forward a month (it’s now August) and its option #2. I am now the second person in this very exciting trial (this is a phase one trial by the way). We have to pause in the story here so I can tell you that during this period all my hair grew back, and it grew back dark (I was completely gray when I went full body bald). At least I won’t be bald for the funeral, that would have just been weird and awkward for everyone involved.
So back to the story. I’m in the trial and find out that unlike chemo, which was every other week, this new treatment will be weekly, every Tuesday. Well, that sucks, no “off” week. I’m also a little preoccupied around this time because I’ve been off chemo for a while and the cancer side effects are starting to return (cancer side effects, not chemo, which is really terrifying). Yes I have hair, but I also have night sweats, dizziness, weight loss . . . all the fun shit I had right before I got diagnosed in Oct 2013. AND, I’m told I need to spend three days in the hospital for the first treatment in case there are any serious reactions (like the experimental drugs kill me). I’ve never spent the night in the hospital and am a little freaked out about this. It will be just like a hotel right, just with really sick guests? I’m actually hoping I have to stay for 3 days because it’s really a secret government program to make superheroes and I’m going to walk out with Deadpool and Wolverine like powers. I know what you’re thinking, that’s just stupid. But is it any more stupid than the doctors thinking that after a gazillion immune trials on colon cancer that this is the one that will finally work? Probably about the same odds as superpowers.
Now in all seriousness, this hospital thing is a big issue for me. Why you ask? Because people die in the hospital all the time, don’t you watch TV? As usual, cancer knows my deepest fears and delivers once again. I can now assure you with 100% confidence that sleeping in a cancer hospital is everything you would imagine it would be. Let’s start with the person in the next room dying on my fight night and all their relatives crying in front of my door. Really, are you fucking kidding me with this shit? Then we had the rest of the routine . . . moaning crying roommate, sleepless nights, lots of needles, a catheter (another fun first), me becoming the moaning crying roommate. You get the point, your basic three day shit festival. I do have to say that as bad as all of it was, the nursing staff at Sloan is awesome. Somehow they keep everything positive and are funny as hell. Cancer nurses are some of the strongest, funniest and most positive people I have ever met. They are truly remarkable human beings. Somehow just when you are mired down in self-pity or fear, they crack a joke and it all seems not so bad (like when the nurse told me she’d be right back to “rip” my catheter out so I could go home and stop complaining). Normally penis trauma jokes are very upsetting, but somehow this was ok. So I made it through the first treatment, the experimental drugs didn’t kill me, but it was a truly awful experience. All I could think was how the hell am I going to do this every Tuesday and still have a life (and when the hell are my superpowers going to kick in!).
So I was in the hospital Tuesday - Thursday and by Friday . . . I actually felt fine. I went for treatment the next Tuesday and that was pretty much fine too. In the beginning, immunotherapy gives you a fever of about 102-103 for about 3 hours and causes a ton of pain because it inflames your tumors while it jacks up your immune system to kill them. It’s kind of fascinating how it works, but pain and fevers mean your immune system is in hyper-drive, so something is happening. After about 4-5 weeks of treatment (I still went to work the next day every week) the fevers stopped and the pain got much less. I also notice my night sweats had stopped and I started putting on weight, which I diagnosed as positive results. Could this actually be working . . . surely not. And as you probably guessed, no superpowers yet.
So around week six I get another pet scan (this measures cancer “hot spots”) and it appears that some of the spots seem to be getting smaller. Hmmm, that sounds kind of good. Later that week I go back in and get another liver biopsy. They biopsy the same tumor they did right before I started the trial . . . but now it seems like that tumor is mostly full of dead cancer cells. Hmmm, that doesn’t sound too bad either. In week seven they check my CEA level, and I am terrified at how high it is going to be. Right before I started the trial it was up to 420 and climbing fast. Wait, exqueeze me, did you say my CEA has dropped from 420 to 78? Ok, yeah, ok, that doesn’t suck, but don’t get excited, surely this is all a mistake and the hammer will fall again. In week eight they do the cat scan (this was last Friday). The cat scan is the real test of whether this is working or not. With it they actually measure the tumors and see if there is tumor growth, stability or shrinkage since the start of the trial.
Now we need to pause for a second so I can provide a little background on the cat scan process. For the last 3 years and 16 cat scans I get my scan on a Friday and my doctor explains the results when I see him on the following Tuesday. Always face to face, always a couple days later. In fact, in the last 3 years and 16 cat scans I’ve only gotten ONE call the same day as the scan. That day it was a nurse calling to tell me to go to the emergency room immediately because I had a blood clot in my lung. Even then, my doctor didn’t call me himself.
So I have the scan last Friday and that night my phone rings . . . and it’s a nurse from Sloan Kettering . . . holy shit . . . “Can you please hold for Dr. Segal, he needs to speak with you?” Ok, I’m instantly sweating, dizzy, hyperventilating and about to throw up all over the living room rug. Holy shit, holy shit, this is really bad, see what happens when you get excited, cancer knows. ..
So I wait about 6 hours for my doctor to get on the line (ok, it was probably about 60 seconds but it felt like 6 hours). Finally, he comes on the phone and says he just wanted to call to tell me the scan results look fantastic. I’m sorry, can you repeat that, I’m a little preoccupied with the FUCKING STROKE you just gave me. All I can really muster is a meek “thank you” because I’m teetering on balling my eyes out and still about to throw up on the living room rug. “Hi, the cancer isn’t going to kill you right now so I’m going to try to kill you with a heart attack instead”. Nothing with cancer is ever easy.
It actually gets a little better if you can believe it, but don’t get too excited, cancer is always listening. So this Tuesday I go for treatment and I meet with the head of the colon team at Sloan. I’ve started meeting with him recently because the doctors are pretty jacked they finally have an immunotherapy for colon cancer that isn't a complete failure. Apparently my colon is becoming somewhat of a celebrity and everybody likes to ride the celebrity train, even world renowned doctors. Anyway, he gives me some more info about the cat scan. There was some significant shrinkage, some small tumors are gone and some stayed the same (which is ok, not growing is good). I guess the shrinkage was up near 30%. He also told me that unlike chemo, which eventually stops being effective after a while (yeah, no shit Sherlock) and “targeted therapies” which only work for a short time, from what they have seen with other cancers, immunotherapy seems to just keep on working. Even if it eventually stops shrinking tumors, he says it still holds them stable, which is pretty good news.
Another nice perk about immunotherapy are the side effects, which are minimal. I now can get treatment in the morning in midtown, jump on the subway to my office downtown, work a full day and even grab a beer on the train ride home. It’s all quite civilized now and a massive change from chemo. Every week feels kind of like an “off” week and I have a ton more energy (it’s the superpowers coming in, I know it).
GOOD LORD this email is getting long. Guess you probably wish you were one of the folks who bailed out after the short update at the top. Sorry about that, just a lot has happened.
Let’s recap and let you get back to the non-colon related aspects of your life: they are sciencing the shit out of cancer with immunotherapy . . . Sunday Rumday should really be an everyday thing . . . The movie Deadpool was obviously based on me . . . .penis trauma jokes are only ok when told by a cancer nurse . . . staying in the hospital is NOT anything like staying in a hotel . . . there is probably more to being an astronaut than a month of tests . . . having a famous colon is pretty cool in some social circles . . . I should have bought the horse when I had an excuse . . . my hair is awesome and hasn’t been this dark since I was 30 . . . and lastly, I’m still waiting for my superpowers . . OR . . . do I already have them and have been sworn to secrecy by the government agency and now spend my nights fighting evil and watching the city vigilantly from the ledge of a skyscraper?
Anyway, that’s about enough for today.
Keep the prayers and good wishes coming, it’s apparently working (I’m not letting those dope smoking doctors at Sloan take all the credit, you are a big part of this).
Remember, travel forward and travel light. Don’t carry all the negative baggage, its exhausting.
p.s. For all my folicly challenged friends who welcomed me so warming into the bald club this year. . . .yeah, this I awkward . . it’s not you, it’s me . . .but I’m gonna need to give up my membership . . . CAUSE I GOTS HAIR AGAIN BALDIE!!
Long time no hear!
Well folks, it been about 6 months since my last C-Note. The real reason behind the delay is that these are much easier to write when you have positive things to say. Yes, cancer is hard, but if you feel things will be alright in the end its much easier to deal with it. Unfortunately, some recent events had me questioning my positive attitude and how this situation was going to end for me (Spoiler Alert: I’m positive again . . .but Han Solo dies).
In addition to some negative turns with my treatment, I also had a couple of life events that put a chink in my seemingly impenetrable armor. First, my brother passed away in the fall. This was the kid we called “unbreakable” because no matter how bad his health would get, he could always rally back out . . . until he couldn’t. Second, cancer took one of the most inspirational people I have even met a couple months ago. She was one of the first folks I spoke to after my diagnosis, and her strength, advice and example is what got me out of the “I’m going to die haze” and back on a track to life. She was also someone I viewed as unbreakable. The examples they set in how to face challenges will always be a part of me and live on, I guess I just forgot for a while (ok, pause for a tissue break).
So as for me, my last update was right after I switched to the new medication. To provide a recap, there are two main chemo drug treatments for my type of colon cancer. I was on the first one for about 2 years, but then it became less effective. I switched to the new one last September, and its been a bit of a roller coaster that finally seems to be on track. The first few months on the new drugs were pretty unpredictable on the side effects. We seemed to be bouncing back and forth between somewhat debilitating, such as not being able to walk due to severe cramps and back pain, to getting really sick and losing 18 pounds (think dysentery in a POW camp sick, I thought that was the end of me) to actually not too bad and bouncing back in a couple days. Recently I think I’ve gotten things pretty much under control on the side effect front, you’d be surprised what can become your new normal.
Speaking of new normal, I just had my 64th round of chemo yesterday, which is just a ridiculous number even to the nurses. I also got results to my most recent scan. This last scan and meeting with my doc was what put me back on the positive track and writing again. Its not that the scan was great. The last two scans have shown very small growth on a couple of tumors (the rest are “stable”). The problem was I was convinced that this scan would be awful. And if things were growing, the chemo wasn't working. And if the chemo isn't working, that's the end of the story.
As I mentioned, there are two main chemo regiments they use, and I’m already on the second, and was now getting some small growth. My thinking for the last few months was that once this drug stopped working, I’m finished, so even small growth was providing disproportionately sized panic attacks on a regular basis. I was also convinced that the scan results I was getting yesterday would show HUUUGE Trump sized cancer growth. There was some actual logic to my conclusion. You see, the scan was Friday and my bloodwork was posted online Friday night (not the actual scans however). The protein marker for cancer growth (my CEA level) in my blood had doubled since my last scan . . . holy shit. So I put my English degree from Montclair State to work and diagnosed that I was dying very soon because the cancer was growing out of control. Obviously hearing the results from my doctor on Tuesday, who would analyze the actual scans, was just a formality at this point.
This made for an interesting weekend, and just for the record, thinking about your own death blows. Its very surreal and provides an endless (and useless) stream of “what will happen when I’m gone” scenarios. These pop in fairly regularly anyway, that comes as a package with cancer, but this weekend we took it to a whole new level of crazy. Now the reality is, when this drug stops working there are more options, which are very new. I was just assuming new meant “too new to work”, again relying on my extensive medical education.
As it turns out, the growth that showed in this last scan was minuscule (the CEA level was not proportionate to the actual growth, go figure), which means we keep on the current chemo track, its still working. When it does stop working, my doctor is very excited about the new immunotherapy drug trials they have because they are seeing some great things in the responses. Being at Sloan is a blessing because they have about a zillion trials going on with immunotherapy, which is the future of cancer care. AND, as a perk, he told me my hair will grow back.
So according to my doctor, I’m actually doing great, not dying any time soon, he is very positive and is REALLY excited about the immunotherapy treatments. So the punchline is that I’ve been thinking way too much with way too little actual information, as usual. Stupid brain . . . I need to just go back to killing you with beer.
So did you catch the important bombshell in the paragraph above? Not about me not dying, which is cool and all, but the important one, about my hair. I am SUPER bald, like no hair at all. And I don’t mean bald in a very short cool stubble way like a movie star, with five o’ clock shadow and bushy eyebrows. I mean like super bald, like hairless mole baby bald (they’re bald right?). My beard also went on vacation with my hair, and I guess they needed some of my eyebrows to carry their suitcases. Head, beard, eyebrows, arms, legs . . . well, you get the picture. I am ready to grease up and swim the English channel I’m so hairless. Luckily, my head is a pretty good shape, and without the hair, it looks significantly less gigantic, which is cool. I also wear my glasses now which not only allows me to see, they help break up all the skin on my face (and give the illusion of eyebrows). Bizarrely, nose hair wasn’t impacted at all. The only hair that grows besides my nose is a small gray half goatee on the bottom of my chin, which gives me a bald weird hipster look, but I’ll take it. Fucking hipsters.
Cancer is a funny thing. Just when you think you’ve got the routine down and know what to expect, it changes the rules of the game. Its goal is to wear you down and have you give up. I have to admit, the longer you do it the harder it gets to stay positive, but you really don’t have a choice. Trust me, I’m REALLY fucking sick of having cancer. The key is to just keep pushing forward and not to carry all the anger, fear “why me” type bullshit with you. There are so many new challenges to pick up going forward, you can’t have your hands full of the garbage from the past. That’s the new philosophy kids, travel forward, travel light.
Whew, soooo serious. Have you heard enough about my colon for today? Shall we recap and let you get back to your lives?
As a recap . . .I look AWESOME bald . . . english degrees are a poor substitute for medical degrees . . . . the future looks much brighter today than Saturday . . .nose hair is incredibly resilient. . .baby moles are bizarrely cute (i googled em) . . . . I am going to resume killing my brain with beer . . . fucking hipsters ruin all the cool looks . . . other people can have a massive impact on your life . . . I can’t believe they killed Han Solo, WTF . . . travel light my friends!!!
As always, thanks for the prayers, support, food (Michelle C, my 2 ½ year chef) and good thoughts. Without you all, and especially Courtney and the kids, this would be much harder.
Later campers, until next time.
Before I give the update on my most recent scan and its implications, lets pause for a moment and discuss how handsome, dashing and sexy bald men really are. Sure, the look was first made famous by Uncle Fester and Kojak, however folks like Bruce Willis, Sam Jackson, Vin Diesel, Dwayne Johnson, LL Cool Jay, and Jason Statham have made it super cool. Even Britney Spears pulled it off with some success. But I digress, more on that later.
I got my scan results yesterday and it ended up being a mixed bag of positives and negatives. For the last 23 months my scan results have been very steady . . .nothing new, nothing grew and most of the time, some solid shrinkage. This meant we stayed on the current course with the same treatment and drugs, however that changed on this round. For the first time, the two tumors on my liver showed growth. Now, this growth was minimal at 0.5 centimeters, and the rest of them stayed the same, but this means we change course to get back on the shrinkage track. There are two main drugs that work best for colon cancer, each with a different set of side effects. Typical course is you use one until is stops being very effective then move to the other. Now I’ve been very lucky that the first one worked steady for 23 months and 45 rounds (which is great), however it is now time to change to the other.
So there are some positive and negatives to this. The new drug is administered fully at Sloan, which is positive. This means I don’t need to walk around with an infuser bottle attached to my chest with a big needle for 48 hours. That’s actually awesome. I do have to go back to the every other week schedule, which kind of sucks, but I did it for 19 months, so I’ll adapt again. I do need to get use to a new set of side effects and reactions, which is really annoying, but they seems pretty tolerable on paper, with one glaring exception (now, back to my original comments) . The big side effect is pretty shitty (and its not explosive diarrhea) and especially traumatic for me.
Wait for it . . . I was told yesterday that my hair will fall out in “clumps” within the next 10-14 days. HOLY SHINY DOME BATMAN! Now we all know how much I like to make fun of my balding friends, so I’m pretty concerned on the negative impact this will have on my joke material. Also, since I haven’t been bald for the last 43 years, I’m hoping I don’t have some bizarrely shaped melon or birthmarks lurking under my locks. The thought of “clumps” falling out is also way too disturbing, so I’m going to shave it down proactively tomorrow and go all Breaking Bad Walter White. And apparently my eyebrows and beard will stay, which is weird, but cool. Not sure how the drug knows where to stop killing hair. I am a bit curious on where the “fall out” line is drawn. For example, I’ve noticed, as I’m sure many guys my age have, that my ears and nostrils seem to be acting as if they are covered in Rogaine. It would be nice if the new chemo took care of that problem and extended to my ears and nose. This would ease my grooming regimen. And speaking of ease, just think how much faster I can get ready in the morning without having to worry about my hair, and I can probably buy a boat with all the money I’ll save on hair product.
See, there are positives, but I do have another issue. I spend quite a bit of time at the beach, so I’m pretty tan. Not George Hamilton tan, but significantly darker than my mostly Irish genetics. Shaving it down tomorrow also gives me the opportunity to try to tan my giant white head for the last weekend of the summer (if you see a strange light in the sky this weekend, it’s not a UFO, it’s just the sun reflecting off my huge bald head). Is it weird that my main concern of the new chemo side effects is having to deal with cranial tan lines?
Yes, bald sucks, but to put things in perspective, I was also on a drug for 32 weeks that shut off my breathing anytime I drank or breathed anything colder than room temperature, during one of the coldest winters, trapping me in my house with warm beer. When given that choice, bald seems pretty damn good. AND, let us not forget my hair will grow back eventually, unlike many of my follicly challenged friends, and it may grow back even thicker, making me even more obnoxious about my mane. HA! See, I can still mock the baldies even with my impending streamlined dome.
And HATS! I love hats, but was forced to only wear them on a limited basis due to my overwhelming fear of “hat head”. I’m a little concerned with hat availability however, given the size of my head, which is massive (it’s a miracle our kids don’t look like those giant head statues from Easter Island). My friend Mike said he will check to see if there is a hat version of the Big & Tall suit store for guys with huge heads (Immense & Voluminous Lids?). Otherwise I’ll probably have to find a store that sells mascot heads to take care of my hat needs (luckily, the new drugs kept me up from 12:30-5:30 last night so I had a lot of time to consider my head).
So let’s recap, shall we . . . new drugs blow, but not as much as growing tumors . . . I’m still alive . . . there are more sites on the internet to buy mascot heads then you think . . . being bald with facial hair does not mean I know how to make meth . . .yet . . . try to avoid using the word “clumps” in any context, its never really works. . . the less time with large needles in your chest the better. . . wear sunglasses this weekend to avoid retinal damage from the glare of my head . . . it’s really sucks fucking hipsters ruined fedoras for everyone . . . AND I AM ABOUT TO MAKE BALD THE NEW BLACK . . or make bald whatever is already the new black, i'm really not sure, but you get the point!
I will leave you with a fantastic quote a good friend gave to me yesterday when we talked about my results. “Life is not about waiting for the storm to pass, but learning how to dance in the rain”.
Keep your aquatic dancing skills sharp kids, they come in handy, trust me.
As always, thanks for all your prayers, food, thoughts and support (although its been 23 months and I’ still waiting for the bag of $20’s . . . just saying).
P.S. That just reminded me a of an awesomely bad dad joke. What’s the difference between an alligator and a crocodile? One you’ll see later and one you’ll see after a while!