So another broad post with an all encompassing range of emotions and experiences. My daughter Allie will undoubtedly let me know that this is way too long! It’s my blog and I’ll write what I want too :-). I understand that it is a rather robust read, but I have a lot to share and sharing is one of the healthiest things I do these days and while I write for you to read, I write for me to heal.
I’ll also warn you that there is some content that is awkward, difficult to share, that some may be uncomfortable with. It’s all part of the reality that I am experiencing. Enough of you have demonstrated that you ‘get me’, Whether you’re feeling the reality of what a cancer patient experiences, whether you’re becoming more in touch with you’re own mortality or whether you’re relating to an experience of your own, I am overwhelming humbled by the way many of you share your appreciation of my posts. You all inspire me. Please take a moment if you feel you benefit and share with your friends – whether sending the link or doing a Facebook share. The more people that I am able to reach, the greater the chance that my experiences will provide people tools to handle or learn to communicate their own adversities. It was a huge risk I took to share openly what I am dealing with. Writing brings me a feeling of purpose at a time when purpose has the potential to dwindle. There are references in this posts that refer back to prior posts. I try and point them out for first time readers.
We arrived back at home last Wednesday night. I was freaking wired on a continuing buzz from the prednisone protocol I had taken on Tuesday. I was 40 hours with little more than a brief doze by the time we got back to the house and could just feel the meltdown beginning to sink in. Had to skip the Flyers game. So chair watching from the living room was an easy alternative. I hate missing Flyer games. The Dayton Flyers are a great community asset, they deliver entertainment and exciting basketball and have a great organization continuously working to enhance the customer experience. I’m glad that Felice & I made the Flyers a center piece of our family as our children grew. After the game, I got an incredible nights sleep.
Thursday was a so/so day. Woke up with bad nausea, low energy and didn’t go to workout. Let’s be clear, my workouts with my trainer resemble the workout of their 90 year-old women clients these days, except every one of those women kick my ass. Still, trying to keep a little bit of the mental edge and going through the steps of trying to maintain at least a small level of physical activity. Stayed home most of the day, but did get out and run some productive errands.
Friday started out much the same way, but I forced myself to get to a dinner with our close friends – Kerry and Art Harlan. They have been integral part of the phantom gardeners that show up with seasonal plants to brighten our yard. The same wonderful group that anonymously initiated the #ShaneStrong bands. Honestly, I was dreading being a bump on the log, as many of you have had to experience when dining with me recently. I ended up feeling good, and we had a great meal and really enjoyed the evening. We share the love of our kids, the basis for how we became friends to begin with, just a great evening with really nice, caring friends. And then it wasn’t.
Shortly after going to bed I found myself in immense abdominal discomfort. I had experienced this pain a couple times before but not nearly this intense. Felice knew I wasn’t comfortable but she had no idea the level of discomfort I was experiencing. I was pretty sure I was probably experiencing some really intense gas. Ok this is where the conversation gets awkward. It likely is going to represent just a little TMI for many of you, but it’s the reality of GI tract based disease. I think as a cancer patient, we have to accept the loss of our privacy, much in the way that child bearing women lose their privacy with pregnancy. When I go to the doc, my bowels are the central discussion points with the nurse, then the Fellow and ultimately the Doctor. Detailed conversations about pooping happen at least three times each visit and more when I have scans. This requires unnatural and unpleasant observation practices as well. I’m taken back to my sophomore year at Indiana. I was living in the Delta Chi fraternity. A shit hole of a house with the least modern of plumbing facilities, including multiple side by side toilets without dividers. Ok, I admit that I grew up spoiled and had private use of a bathroom. Even in the facility-challenged camp I attended, we had dividers. I walked into the bathroom one day, and there was a sign above one of the johns pointing down. Of course, human nature requires that you see what the sign is pointing towards. I will never forget inching over to the john, looking down and seeing this magnificent specimen with a toothpick that had a little flagged sign protruding from the specimen that said ‘piece of art – 12.1”. The guy that measured and proudly marked his specimen is one of the craziest and kindest person that I’ve ever met. We’ve stayed in touch and I’m pretty certain that given the opportunity, he would still mark his specimen proudly – even in a public restroom – that’s how crazy and fun-loving this guy is. So, I’ve reverted to those college days and must inspect specimens to be prepared to discuss with my doc. Dr. Wolff is very matter of fact ‘Look Mike, you’re bowels are your bowels. We’ll give you the tools, but you need to manage the line between constipation and diarrhea. I suggest you don’t over react, or you’ll have wild swings” Managing this is experiential. So here I find myself off the line, getting ready to face treatments that are potentially going to cause severe nausea and severe diarrhea. Those issues are nuisance issues. The remedy for the nausea creates constipation. So now you get that added nuance. If you take the anti nausea, you have to offset with some anti-constipation. If you over do the anti-constipation, you’re likely to trigger aggressive diarrhea. Saturday, my gas pains began to manifest as constipation. The problem is that as the gas and the constipation build, the pain apply’s pressure that creates immense pain. I couldn’t move Saturday. So I jumped into the broad spectrum of remedies to relieve this situation. In the past, I was usually able to resolve the matter in 24 hours or so. The pain just intensified through the day and any movement in a horizontal position created extraordinary pain, rippling with immediately energy drain. Flyers game missed – watched some of it from the chair. Saturday night was a little better, but still experienced a lot of pain. Now Felice is urging me to text my doc. Thing is, I know that my pain is concerning to her, but I know exactly what I am dealing with. My doc gives me the courtesy of encouraging me to text him if I need him. He answers me immediately. That courtesy needs to be matched with thoughtfulness of when to use. It’s Sunday. The man works 8 days a week. The only answer he can give is ‘if your pain is unmanageable go to the ER. I can tell you that the thought of having to go to the ER to sit in pain while waiting to get in, to be prodded, poked and scanned to learn what I already know was just not in the cards. We had to skip going to Cincinnati to see my nephew, niece and their three adorable boys play with my grand daughter on Sunday – more of a disappointment than those Flyer games. I continued to have signs of relief, but experienced horrible pain again Sunday night. Felice encouraged (aka nagged) me to move. I did 3 – 1 lap slow walks around the first floor of our house. My good friend, Marc Friedman checked in on me Sunday. He’s a wonderful friend. He asked if I was doing any better. I said I was feeling better, but still had some moderate pain going on. He said to let him know if I wanted to go for a walk. Now that was funny! I shared the level of activity that I had risen too. Plus, I can’t handle cold weather – at all right now. I dress like an eskimo most days. Love the offer, like the vision of me being able to take a short walk outside on a warmer day, love the encouragement from a guy that thinks a 30 mile day on his bike is a ‘soft workout’. The thought of trying to walk up the driveway to the street was more than a little daunting on this particular day. I promised Felice I would call my local oncologist on Monday morning. That call with detailed discussion lead to the conclusion that I was severely constipated. More relief came Monday. Switched sides of the bed with Felice Monday night to change the direction of my horizontal position coming in and out of bed. It was the first time in 35 plus years that she had ever slept on the right side of the bed. Honestly, I wasn’t exactly certain that she would do it. She is a great sleeper and very particular about her sleep conditions. I told Jordan that I expected that I would likely end up on the recliner, but of course, she immediately agreed as she is totally selfless when it comes to anything that might bring me comfort. Every inch of every movement to get in and out of bed, brought on horrible pain. It was definitely 8 caliber pain and that might be under estimated.
Tuesday, I went for labs and to see the doc. We discussed my pain. He advised that while it may be constipation, there was at least an equal likelihood that my disease was causing the pain. I had anticipated possible pancreatitis or cholangitis, but hadn’t considered growing disease. That was a little devastating to hear. G-d agreed. I went up to the treatment facility next. My sister, Cindy, had joined us by this time. She could tell that I was distracted by the situation. Within an hour, prior to any delivery of drugs, I began to feel the pain subside. G-d was sending me a message. If you don’t know my thoughts on religion, go back and read my ‘Belief’ post from a couple months ago. Anyway, G-d was telling me – Mike, this is constipation. You need this extra burden of worrying about disease progression to be removed right now, you need to be freed of that worry. I was being sent a clear signal. That’s what I believe.
My onsite treatment starts with steroids and anti-nausea meds. These cause their own side effect issues, but help immensely with the side effects of the chemo. The first drug of the filforinox cocktail is Irinotecan. It is supposed to be the most toxic of the drugs and causes a variety of side effects. The second drug of the cocktail is oxaliplatin. The on-site treatment took about 7 hours and aside from the brief allergic reaction, was very manageable. Of course, the pre-drugs help everything in the initial days of treatment. The final take-home drug is fluorouracil nicknamed (5-FU). Got to wonder about a drug with a 5 FU nickname :-). It drips very slowly over the next 48 hours. When I say slowly, it is releasing about 5cc every 30 seconds. The list of common side effects are long. The likelihood that the drugs work is high, the question is whether or not my body tolerates it. By body, I mean toxicity issues. If it works and my body tolerates it, the side effects will be what they are and I will deal with them!
While having my chemo I participated in my final Feast of Giving meeting before the event via my phone. For those of you that aren’t familiar with the Feast of Giving, it’s one of my greatest philanthropic passions and one of the things that I get great pleasure from being involved with. It is also a source of great pride that my family has embraced the event as well. The Feast of Giving is the largest-known, community Thanksgiving celebration in the world. We are entering our 50th year of an event that originated as the Beerman Family Thanksgiving Dinner. When the Beerman family left Dayton, they left the event behind, on short notice. Dr. Steve Levitt and Dr. Tom Olsen partnered with Fox45 / ABC 22 to save the event from dying. In just 6 weeks, they saved the event. When I learned of what they did, I asked for the opportunity to get involved. At first, it was my former company that jumped in to assist. I’m proud to say that many of my former associates still participate annually in this extraordinary event even as the company has ended their financial support, in part because I stopped asking. The Shane Family is involved at every level and I am immensely proud of the role that each of them play. My grand father and father were active civic and community servants. I have always wanted my family to understand the importance of community duty. For me, it extends far beyond writing a check. The responsibility to give back to our community is one that it is a privilege to be able to do in whatever capacity possible. We have a team of dedicated community members that give their time to execute the event. The group we have compiled is 15-20 volunteers that each own various tasks, dispersing the workload and providing leadership succession to assure the event’s continuity. We plan a community Thanksgiving celebration for approximately 8,000 patrons each year. We have Grammy award winning, Shirley Murdoch perform the national anthem. We have a locally renown band – The Glen Bowman Band – perform with a full dance floor. We entertain approximately 700 children each year in our Kid’s room – full of arts and crafts with a DJ that plays age appropriate dance music. We have 12 tastefully decorated service stations to serve our patrons, with service providers to deliver trays, get our patrons drinks and special services for disabled patrons. We provide a place for small families, elderly, lonely and the under served to jointly celebrate Thanksgiving. We also provide caps and gloves to all that need. The Regional Transit Authority provides free transportation county wide to provide transportation for our patrons. We have over 400 volunteers that give of themselves to enrich their lives and enrich the lives of others on Thanksgiving day. We unfortunately have to turn away over a hundred other volunteer hopefuls, but offer them the opportunity to come share in the event by stopping down and having a meal, eating one of the 8,000 slices of pie that will be served. Those 8,000 pieces of pie are cut by an area football team. Local companies donate services, ranging from delivering our decorations from storage, to doing set up, to providing Bill’s Donuts to our volunteers. Many food items are donated. Our turkeys are provided from a turkey farm – Cooper Turkey’s in Van Wert, OH. This isn’t even their primary service market. Year in, year out – Cooper Farms which raised a presidential turkey for an Obama Administration Thanksgiving (I believe their Turkey was pardoned) donates 2 tons of wonderful Turkey Breasts. Many other local companies help in whatever way they can to help us pull off this extraordinary event. The Docs, our family and others underwrite the cost and are building an endowment to assure that the feast will continue in perpetuity. The Feast of Giving is a true example of the intersection of community, government, and philanthropy all working together in fellowship so that no person in our community goes without a warm meal in a warm environment to celebrate one of the greatest days in America. So missing the meeting was not an option. The Steering committee patiently dealt with passing a cell phone around to conduct our final walkthrough of the event. It’s a fine oiled machine. Still with 8,000 patrons, there are always moving parts that need detailed ownership. As we continued the call, my tongue began to feel heavy and I started having problems pronouncing words. During one of the reports, I muted my phone and called over the nurse. I explained what I was experiencing. While I went back to my call, she halted treatment, called in the Nurse Practitioner and by the end of my call were treating me for an allergic reaction to one of the drugs. I classified this moment as a Megan ‘badass’ moment. (Megan ‘badass’ is defined in recent posts).
My son-in-law, Adam, one of the two best gifts that my daughter has brought to us, sent me a text. To understand Adam, you must go a level under his fairly serious, although fun-loving exterior to his well timed subtle humor. The text simply read – You still backed up? below the following video:
This is a video from when our little angel, Sid, was about 7 months old. I couldn’t stop laughing – hope you get a little laughter too, but in that brief moment, my grand daughter reflects subtle comparisons to my last three days….I’ve probably played this 20 times today and each time I painlessly am able to laugh my ass off…hope you get a little laughter from it as well.
I went on to complete the in-facility portion of the treatment and felt really good as we left with my take home treatment. The final drug in the trilogy of drugs is a slow dose 48 hour drip. As I write this, I feel really good. I’m riding a major steroid buzz, but my pain is almost entirely gone. I have opted to sleep (if I sleep) in a recliner tonight. I want to avoid creating any stress or inflammation to the pain site. I figured my constipation had to create some level of internal inflammation that I want to heal. Of course, I’m relying on the education I have developed from ER, Grey’s Anatomy, The Resident, the Good Doctor and New Amsterdam as the foundation of my diagnostic prowess.
I’ve been warned to expect to feel like crap (appropriate term), but I honestly believe that some of that is oversell. We’ll see what the next few days bring. In the meantime, I am so relieved (in many ways) to have had my pain lifted and am celebrating feeling good and ready to deal with whatever is ahead.
Jordan and I spent the two hours riding my steroid buzz deep diving into our Fantasy Football team. For those that don’t know me well, one of my great pleasures is being the commissioner for the last 31 years of a Fantasy Football league. There is money involved, plenty of it, but we chase the trophy. Our league started before the internet, before software packages, so we used manual scoring from the USA Today box scores. Once Al Gore brought us the Internet, I then designed a database to build these reports and created a pretty strong package over the early years. At some point one of the owners suggested that I market my database to fantasy football enthusiasts. My brilliant response ‘Who gives a shit about fantasy football”. TRUTH #3: Market vision was never a strength! So now, there are three of our teams that have become generational. Jordan and I spend an inordinate amount of time talking about fantasy football. He is my partner on this team. We compete in a Family league with the Abromowitz Clan, my nephews, and a couple of close football friends. My brother-in-law, Ron was a participant and we now have a traveling trophy that is in his memory that we chase to own. Fantasy football is one of those things that brings joy to each day – it’s the little things.
So I feel like a celebration is in order. No real reason except sometimes it’s just fun to celebrate. TRUTH #4 – you can’t buy health. You can’t buy love (though many people try). Buying things can’t bring you happiness, but a little retail therapy, shared with those you love can be a lot of fun! To know me is to know that my definition of retail therapy means only one thing – technology spending spree! So that’s the way I’m celebrating. Need to push up those Apple results next quarter – going to do my part.
I’ve heard from so many of you in the last week. I’ve heard from several former associates. People humbling me, sharing the wonderful feelings they had when I had the good fortune of working with them. I even heard from a former associate that together, we shared a less than favorable business experience. An unfortunate reality of circumstances, turned ugly. I was touched by his contacting me. When former adversaries can put those hard feelings aside and reach out to show support, that’s touching in a way that brings hope that humanity is alive and well. TRUTH #5: Regardless of the unfortunate state of affairs that we witness daily, humanity is still alive and well in our society and we need to embrace and foster its existence.
It’s now 5:00 a.m. and I am going to try to see if sleep is out there for me by watching an episode or several of House of Cards. Loved that show until it fell apart. Going to give it another chance.
Thanks to all that follow me, share me with others, pray for me and ‘get me’. It’s an honor to have you all share in my experiences and my developing passion of sharing them with you.
I will be sending out a special Thanksgiving message next week – sharing the meaning of Thanksgiving to me.
Love, Mike. #cancersucks #boocancer. #megansabadass #ShaneStrong.