3RD ANNUAL BARN DANCE FUNDRAISER!! THIS SATURDAY!!
Time for another self-indulging promotion of our 3rd Annual Fundraiser on Saturday September 26, 2015. Please buy your tickets today! http://www.fightlikeachampion.org/events-fundraisers/
I’ve said before that I have no issues bragging about this event because I don’t set it up and it’s such an awesome night and a really uplifting time for me. The amount and quality of auction items this year is phenomenal! There will be some great deals. Also, as I’ll reference below, we are starting some costly treatments so we can use all the medical money we can raise. Special thanks to my immediate family, the Chicago Von families (especially Uncle Tom, Aunt Georgia and Billy), all my parents’ neighbors, Joe Atamian, Maureen and everyone at MFSS & our partners that are making a HUGE contribution of time, effort and money for this event. Thanks also to the hundreds of family, friends, businesses and people that don’t know who the hell I am that have donated incredible items to the auction/raffles. In my most silent moments I can’t help but feel this gracious sense of pride that my life was deemed worthy of such events; that the way I’ve lived and the many friendships I have built has put so many people in my corner, rallying. It’s the greatest present I could be given.
Now on to the blog………
Man I don’t know if I should be more ashamed that I left our Christmas mischief as the ‘last’ post for this long or that you could have conceived a child and then actually had it since I last checked in. Please tell me someone actually has. Spare me the conceived details. What can I say? 30(ish) year olds with ALS and devilish good looks are popular people. And I’ve been out and about. Most of you have seen me. Now where to even start… well we can run thru the basics. I’m not dead (plus). I’m not cured (minus). I’m still a smartass (plus). ALS Sucks (still). And I still firmly believe there’s some milkman out there as my real father (plus/minus). 2015 has had some of the most gratifying and challenging moments in my life. Why don’t I catch you up…
We did learn that the first clinical trial at Mercy in Grand Rapids didn’t turn up anything significant. Well, that’s a qualifying statement with the qualifier that many believe there are hundreds of subset diseases that make up ALS. So, trials might help 15% of patients with ALS (pALS) but we don’t know why and aren’t advanced enough to correlate some shared gene(s) with those 15%. The future is genosequencing everyone immediately and then finding connected mutations and learning what treatments that subset respond to. Anywho, it didn’t help me. But 26 trips to Grand Rapids and back didn’t come without its share of joy. We met and fell in love with Dr. Gelinas (who currently serves on our personal advisory board), Dr. Baer (The dudes’ dude) and the hilarious staff of Lynn, Stacey and Heidi (that’s what she said). I miss them all.
The 2nd clinical trial I got into was the much-hyped Brainstorm’s “NurOwn” stem cell procedure at UMass with the esteemed Dr. Brown. I was REALLY hopeful on this one after seemingly encouraging results in Israel. Unfortunately, I felt no benefit anywhere in the months after injection. There was a 25% chance I got placebo. We’ve also heard anecdotally that people weren’t rushing back to the trial with any significant improvements. Most doctors believe that any successful stem cell treatment must include multiple injections and at higher dosages. They are testing that out soon in Israel. Unfortunately, the FDA (and other countries’ equivalents) move too damn cautiously for my liking, forcing companies to do long, drawn out trials at each step. I get it. I get the Macro perspective. Why approve something without overwhelming evidence of statistically significant efficacy, costing insurance companies billions that is passed on to customers premiums. More importantly, why lead patients to a treatment that may not help them at the opportunity risk of trying something more promising. The grounds for approval are under a microscope when you’re talking about the whole expensive and extensive surgical process of special IP stem cells, along with the general risks involved. That doesn’t make it any easier on us ‘micro’ individual patients who are dying.
I am now pretty much excluded from any trials since my ‘2 years from first symptom’ has passed and my breathing scores are right up there with the 91 year old Jimmy Carter’s.
Current Health Status
I can’t lie; things have progressed much more rapidly this year than last. I really don’t get it. I had a seemingly slow progression the first year and I was told your progression doesn’t change much. For you math folk, my progression slope (the derivative) should be linear, like a simple HS calculus equation of f(x) = x ² or f(x) = x³. But that’s not the case. While I don’t have an exact equation to reproduce my bumpy slow then rapid decline slope, I would bet it is in between the 2nd and 3rd standard deviations of a normal bell curve. Since we all remember the 68-95-99.7 rule from Statistics class, that means my progression ‘dot’ is such an outlier that at least 95% of all progressions have been more normal than mine. There. Math. I miss it. But to put my progression further into perspective, the ALS-FRS (Functional Rating Scale) is one way you track your disease progression. It’s a 48 point scale based on your answers to 12 questions. I was told you have a rather linear progression on the FRS. Well from 1st symptom (March 2012) to September 2014 (1.5 years), I only lost 5 points. I scored a 43 in Sept 2014. But from then to now, my scored dropped from 43 to 17. Crazy.
In December was when I first noticed some weakening of the fingers. It was so odd, just my left hand wasn’t as strong. We had been told that for some cases, the ALS disease can stay contained within your bulbar area (speech, swallowing, etc) for years and years. So this was quite a disappointment to us. Once February hit, it quickly spread thru, making my left index finger stay bent at a 90 degree angle and rendering my left thumb basically useless. It has also spread to my right hand, affecting my thumb and index finger the most so far. My typing has also slowed down. Here’s me trying to straighten and spread my hands as far as they will go. In other news, my hands just signed on to play the Snow White’s evil stepmother’s hands in the upcoming Broadway play (bros, relax…I don’t know these fairytales off the top of my head. It took a lot of google searching to find out the fairytale that included those gross hands and the apple. I got that image in my head, wanted to include it…. Thought it was Little Red Riding Hood – read that whole plot. Then thought Cinderella – read that whole plot. Finally googled “Poisoned Apple” and Snow White came up. Then had to read that damn plot before finding where this lady with the weird hands fit in. Ahhh it was the evil Queen in disguise!).
In March, it was taking me forever to eat all the calories I needed so we elected to have a feeding tube surgery. It’s essentially just a tube that hangs out my stomach to pump food into me. I know, real sexy. Safe to say, my hot beach body days are over. It’s kind of a bad-ass battle scar though. And my beer chugging days aren’t over just yet! The feeding tube was to supplement calories so I didn’t need to eat and drink that much. Sure, my ability to eat and swallow had gotten worse, but I was still mauling down Chicago Cut filets like cows were going extinct. That all changed on the morning of April 11th. I tried swallowing a large anti-inflammatory pill and it got stuck in my throat. Then the contents all came out on my throat and just burned like hell for a few days. I kept waiting for it to clear so I could resume eating. It never did. One of our pulmonologists blamed it on normal progression. That was nonsensical to me. I was eating steaks and drinking one night, then an acute trauma happened the next morning followed by not being able to eat basically anything. I swore it would heal up and I would be back to normal. It never did and I was now resigned to a life of tube feeding with food tastes here and there. Though the food tastes are getting harder and harder these days.
But, the biggest concern I now have is my breathing. Your breathing is always on your mind as an ALS patient but it was on the backburner of issues I was dealing with. That all changed during a 6 week period of stress with our wedding coming up, followed by a 2 week Euro honeymoon I packed with sight-seeing tour after sight-seeing tour. Neither Linds or I could have guessed the nightmare we lived thru as my breathing couldn’t keep up with the hours of walking these tours required, in record heat, unfortunately. We also had a big issue getting food for me after being told Ensure bottles were really common in the cities we traveled. NO THEY WEREN’T!! Ha, so for the next young, Europe honeymooner with bulbar onset ALS (at odds of 400 million to 1)…. Don’t say I never warned you!! So the combination of under-nutrition, eating too much at once and not realizing what effect all these tours and traveling in general would have on my breathing made for quite a challenge. Of course once we got back I figured I would stabilize and recover some of what I had lost. Unfortunately, my breathing has done a further nose dive since then. We recently purchased a push wheel chair so I can conserve my energy to and fro (yes fro) my destination. If I try to walk more than a short distance, I’m so out of breath that my body has a meltdown and the body twitching attacks me immediately and aggressively. Seriously, it’s horrible. I can’t believe how fast my breathing has declined in even the past month… I’m in the stage of mentally processing and adjusting to this newest reality. This disease seems like just another game….except the rules keep changing.
UPDATE: I wrote that last week. Now I can’t get around walking anywhere outside the house without a wheelchair. We just received a mobile ventilation system I can use as needed, so that should help me. I just don’t get this disease. I know I joked a benefit of ALS was I wouldn’t be around to watch the Cubs win the World Series but I wasn’t thinking THIS WAS THE YEAR!! : )
Current/Future Treatment Status
We will be starting a new treatment this week called WF-10. It is a Sodium Chlorite based drug from Thailand. Another similar Sodium Chlorite treatment, NP001, is continuing through the US Clinical trial phases and just got a $1.5M grant from the ALS Association to help fund Phase 2 Clinical Trial thru (in part) Bob Miller in SF. We have been eyeing this treatment from the beginning, but once I got into the free clinical trials we decided to shelf this high cost treatment. The time to act is now though. I recently had a minor port surgery so we don’t have to start an IV every time we want to do treatment, since we are self-medicating.
We also are considering a costly non-approved stem cell treatment down in Florida.
Celebrate good times….. Come on
Now that I’ve utterly depressed you…don’t let me fool you; I’m still alive and kicking! Here’s some of my favorite moments from 2015… and there were quite a few of them
-We started off the year with my sister having her baby Natalia and me being the proudest Godfather! She is such a good little baby, never seems to cry, is just happy to be alive. She loved my keyboard. But, before we gave her a non-functional one, we decided to hear her out on mine. Her cute little hands banging on the keyboard produced this: 5420 (which is her Mom’s first 4 cell phone numbers), vacaaaaaaaaaaaaa, and then she tabbed over to some unknown screen that only had a little dress emoji. Weirdest thing. How did she find a screen that had literally nothing else on it but a cute little girl dress? I’ve NEVER even see that screen. So we surmised she was trying to call my sister to tell her to take a damn vacaaaaaaa from work and pick up a dress for her. Her intentions were quite obvious.
-In March we celebrated Lindsay’s birthday month with a trip out to Arizona to visit her awesome grandparents. It might as well been my birthday month too. We took a trip up to Sedona and the Red Rocks followed by a journey up/down to the Grand Canyon. But my fun was just beginning. As most of you know, I got a dream day with my favorite team, the White Sox. Yeah I got to throw out the first pitch, hang with Robin and Bo Jackson, and meet basically the whole organization. But my favorite part was just hanging in the training room as players came in and we were introduced. They made me feel like ‘one of the guys’ joking around and then spending some time with me. Chris Sale was so awesome to us. An in depth 10-12 min convo with Linds and I felt like 10-12 hours. I showed Sale what I wrote to Lindsay when I saw him. Even Kenny Williams got a laugh from my note. Special thanks to my gorgeous wife Linds and to assistant Sox trainer Brian Ball for setting this up for me. And to Sox PR Sheena Quinn for showing us around. It doesn’t get better than that day [For sports I’m talking, Lindsay, not for overall life moments, which you have #’s 1 to 50 of course :)].
-Everything Linds touched this spring turned to gold. Next up: Final Four tickets. Aaaand wouldn't you figure, my team since I was 6 years old, Duke, made it to the Final 4. Yes I went to U of I, and if they square off I want the Illini to win by the slimmest of margins...but it’s truly a no-lose situation. I was already a fan of theirs when "The Shot" (college edition) happened. Yet that IL/AZ game to go to the Final 4 my senior year was the greatest game I ever watched (in a vacuum since they didn’t win it all… Right Mike Victor? That’s why Kirk Gibsons injured, pinch hit, Bottom of the 9th, 2 out HR against Eckersly is better than Fisk’s foul pole HR cuz Dodgers went on to win the World Series lol that argument took up ¼ of college!)
I always digress…..so the Final Four plan is to go home Sunday because Linds had to work Monday and I wasn’t forking out THAT much for a 5th level football stadium seat. But of course, Duke wins. Then Wisconsin stuns KY and the same 100 level ticket that would have cost me $2,300 is now going for $500 with KY's quest for perfection over. I had to stay. This only comes around once in a lifetime. By myself, I met some Dukies near me and cheered them on to the National Championship victory. I couldn't believe how good my seat was.
-On a whim, I decided to buy "Home Game 3" off a secondary market site for the Blackhawks Stanley Cup Series when they were still early in the playoffs. I figured I'd make some money selling them if it wasn't the Hawks clinching game, or they'd be going for A LOT more if I waited and it was the clincher, by chance. Well you can guess the ending. I was at "Home Game 3" (Game 6) with my brother Josh when the Hawks won the Cup at home for the first time in 77 years. It's hard to tell in those pics, but there's 3 cool videos in there to check out. It was a really special brother bonding moment for us. This was one of the most sought after tickets in Chicago sports history.
-Then in the 3 months of Eric (think summer of George), I did a little thing called Get Married!! We had a small but awesome wedding on the ELITE Private Yacht at Navy Pier. What can I say, I feel very blessed that she allowed me to pay her for her hand in marriage. In all seriousness, I waited 28 years to meet her and I would have waited another 28 to find her. Simply put, she is the best. Here are some pics from our wedding.
- We capped it off with our Europe honeymoon to London, Paris and Barcelona. Yeah, I mentioned some of the struggles but there will still plenty of awesome moments and things we will never see again! Unfortunately, we tried going to the Tower of London THREE damn times and were late by under 5 minutes each time. Here are a few other pics.
- I want to apologize to everyone I owe emails, texts, Facebook reply messages to. I know you understand, but there’s hundreds of unreplied messages out there and just remember that pre-ALS, this wasn’t me. It bugs me to death. Just please text me again if you don’t hear back from me for a while. I know I am really close to a lot of you that I haven’t gotten back to, especially recently with the breathing issues. Thanks.
- I just wanted to take a moment to thank those especially close to me for all your sacrifices. We have a team of Linds, Mom, Dad, Josh, Sara and Mel who literally take care of what I need on a daily basis. Then the incredible help, support and mentorship from my extended family, friends, co-workers, and neighbors. Hell, we didn’t have enough room at our wedding to invite my long time growing up neighbors, who are like family to me. So they threw Lindsay and I a separate shower flooded with gifts… and real nice gifts too!!! It was unreal, but that’s the kind of people they are.
My Current Mental Status
Well this title is quite a big, loaded question. Boy oh boy, what is my current condicion de cognitivo? Well, I can tell you it’s not at its best and it’s not at its worst. What a cop out. These last 5 months have taken this disease to a whole new level and with that comes even deeper and more convoluted thoughts. Wanting to follow the most prudent daily schedule to fight death for as long as I can is juxtaposed with the reality that, TODAY, will likely be the healthiest day of the rest of my life…. so why I am I wasting it on this ‘routine’? It’s a never ending mind-fuck. I googled versions of "how to cope with your own death" and interestingly I found a lot more diverse and impactful rhetoric on coping with a loved one's death. What the hell? Not much help there. I googled "What is the meaning of life" and immediately wished I hadn't. Where do people come up with this stuff?!?!
I'll start out by saying I'm happy. I really am. And thankful. I could spend the rest of my life thanking people and it wouldn’t be enough. I'm not depressed or even melancholy. The only sadness derives from the realization that literally nobody in this world loves life more than I do. Maybe the same, but not more. So, yeah, when I see my friends and my sister start a family, and every conversation now centers around their kid.... do I sometimes get annoyed, jealous or frustrated with life? Yes, I do. I just want us to relax, enjoy being newlyweds, enjoy everyone else’s kids and look forward to that next stage in the coming years. Starting a family with my best friend, there's not anything higher on my bucket list.
But ya know what? You can't plan life. This is something Lindsay imparted on me very early into our relationship. She very much lives in the moment and I always admired it. Sure, no one has more fun ‘in certain moments’ than me, but I’m really good about keeping an eye toward planning tomorrow. Too much so sometimes. I always knew the exact time. She never did (sorry babe!). But it has worn off on me. And the only way to successfully cope with your own terminal illness is to compartmentalize it all and literally live day to day. Try to make today a good day. Sure, you got to take care of future plans and make sure everything is sealed up tight. But you put on your hat for that. I'm talking about the pure and raw emotions of living. Those can only be fully appreciated in that singular moment. So that's what I do. And I’m getting good at it. I draw some inspiration from how Jim Valvano (“Jimmy V”) lived his life both before and with his terminal illness 2+ decades ago. This video of his speech never gets old and if you haven’t watched it in a few years, please do now!
None of this is said to reflect the hope I still have for a prolonged life. We are excited to start this new treatment and I’m always optimistic. I never leave any game of significance early because I always ask myself “if we come back and win, will it be the most improbable outcome in history?” If I answer No, then why leave. Who doesnt love an underdog story? No one more then me. And with a feeding tube, unable to talk, spit, swallow or walk without a ventilator, I still believe in miracles. Its why Frosh year of college in 2001, when everyone went to dinner, I sat alone and watched the Bears win back to back games in the most improbable fashion capped by Mike Brown’s OT interceptions. That is the eternal optimist in me and that won’t ever go away. I’ve just come to the realization that my end point, whenever that is, will be caused by ALS (I hope). I said I hope because as hard as it is, you get the chance to say and hear a lot of things you wouldn’t get to if you died suddenly. And I am so grateful for that.
The opposite of that, though, is seeing your family and friends helplessly suffering so much. I feel the same, so helpless to their suffering and have twisted messed up feelings of guilt because A. I’m the reason for everybody’s suffering and B. My suffering will likely end before theirs does. I know that’s not how you should think but you do. I’ve never been through a crisis like that for anyone close to me, really. We’ve certainly had some acute losses, most notably my Uncle Dan Hastings, RIP. My Dad has 7 siblings and my Mom has 2 and everyone is still around and pretty healthy. It’s funny, Linds and I were talking about it a few weeks ago and I commented that at about Age 27 I started to comprehend that my parents were in their mid-50’s and wouldn’t be around forever. I kept waiting for that shoe to drop, that panicked phone call that changes your life forever. I knew someone very close to me, at some point soon, was going to die or have something really horrible happen to them. Then, all of a sudden, it’s YOU. 29 year old you, in the best shape and healthiest form of your life. Just as your career is taking off and you know you’re with the girl you will spend the rest of your life with. It’s just….. messed up.
But you have to keep laughing…at you, at me, at ALS and all things in between. It’s what keeps the sanity. How can I not laugh when every time I enter a new environment, THE three things I always do immediately is assess the paper towel, the garbage and the bathroom sink situations haha. Have to make sure I have drool rags, a depository for drool rags and a nice bathroom/sink set up for overflows when I put my smoothies and/or drinks down my feeding tube. We went to a Barcelona Pub and somehow 20 bags of unopened napkins – the fancy soft 5 star hotel/restaurant napkins – were in a box next to me. I snagged 2 of those bags and it made my day! I was so excited, my lips weren’t going to be chapped on some rough, cheap paper towels tomorrow. Upon reflecting, you can only laugh and think - what is my world coming to?!?! And then you laugh some more. This shit is funny. Life is funny. So laugh.
Still searching for inspiration, I went back and googled a little more. “How to prepare for your own death” I think was what I searched for. Well, I scrolled thru the Google results and came upon a blog. I clicked on the blog and sure enough it was advice on dealing with your own death. I look down to see what he had to say and all that was written, in bold Times New Roman font was “CARPE DIEM.” I kind of chuckled, wondering if it was my alter-ego that penned such a punful, simplistic approach to dealing with death. Then I remembered my sister’s Christmas present: a nice, elegant chair pillow, which when I turned it around had the cursive words inscribed “Carpe That Fucking Diem.” She knew that was so me. I thought hmmm, maybe that is the answer to the meaning of life and writing 11 single lined blog pages could really be condensed into two Latin words: Carpe Diem.