Greetings from Houston. Hard to believe that it’s been almost 3 weeks since my last visit. It was really nice to have a couple weeks at home.
TRUTH – The 2nd cycle has definitely worn a bit more on me than the 1st 3 week cycle. Some of the side effects have become moderate. I’m managing the cuts on my hands pretty well. It’s a little freaky seeing your skin open up small cuts almost real time. They start out as a small slit, slightly wider and deeper than a paper cut. Then it grows. That’s wild. My skin discoloration is really noticeable on the palm of my hands. It looks like I need to go wash my hands. That’s freaky. My bottom lip has peeled a couple layers, so I really have to be careful what touches my lips. I can’t put a hot cup of coffee or a warm cup of tea up to my mouth. I have to manage that. Anything with any spice at all (which I really haven’t felt like anyway) burns a lot. These things are nuisances – certainly aren’t impacting me in a material way. I have some moderate indigestion from time to time, usually at night, for which there are few things that I can take at this point in my trial that provide instant relief, and that serves to be a nuisance. Fortunately, it isn’t a ‘daily thing’ so I deal with that. The nausea, now that definitely has my attention. About as often as not my morning starts out feeling quite nauseated. Generally by mid morning, it’s subsided and my day moves on. Other days, it just doesn’t leave. The drug I would like to use for this is also not permitted at this point in my trial. The alternate drug that they offer has some potential side effects that I haven’t been willing, at least to this point, to risk. That may change :-). I manage the nausea pretty well most days and there are days where it is a virtual non issue, like today! Then there’s the fatigue. That has knocked me on my butt a couple times. I’ve had a couple days this cycle where nap to nap to nap was just the way it was. That’s really frustrating when it happens. Fortunately, that hasn’t been a regular issue. On other days, I just need a nap. I am good with that. I’ll watch a show, fall asleep, nap for an hour and maybe watch another show and doze a little more. There are other days when it is not an issue at all. Fortunately, it hasn’t prevented me from making meetings or holding a reasonable schedule. I have had to eliminate early morning meetings – just can’t do it. The one side effect I am really struggling with is being cold. It’s ridiculous. On a mid 50’s day, I’m wearing a thin base thermal layer, a heavier secondary layer with a warm sweater on top. I remember, back in the day at Meadowbrook Country Club, getting on the tee at 90+ degrees, and seeing Jack Margolis, then in his 80’s, walking around in long slacks and a cardigan! Wow, I remember wondering how somebody could do that. I’m not quite there, but… Sometimes I get chills and have to wrap myself in a warm blanket in the middle of the day. We landed in Houston and it was in the 70’s, I took my outer sweater off as soon as we were outside. I’m not excited about coming back home this week to welcome some real winter temps. It’s just another nuisance, but when I’m sitting in a meeting and I have to put my north face over my legs, or wear it – it’s a bit awkward. All of these have become pretty manageable individually, collectively, it tends to chip away at my ability to maintain the positive outlook I want and need to maintain. Then there’s the shortness of breath. Now that definitely affects me a lot. On a good day recently, I hopped on the treadmill to get a little walk in. It was raining outside. I lasted about 15 minutes. My max speed hit 3.0 mph for about a minute. Went to the UD game and walked up the arena stairs and got to the concourse, I had to stop to catch my breath. Walking to the gates at the airport can be a solid workout for me. Walking up the jetway after the flight, I was winded by the time we get into the terminal. There are definitely days when this is worse than others, but for the most part, it appears to recur on a pretty regular basis. The last couple days have been much better though.
This all is a big ass wake-up call on the realities of the toxic nature of treatment. I’m curious to see my blood work and see if the side effects are creating any significant toxicity. Just to be clear, curious is code word for scared shitless. Seriously, the one side effect that is really difficult to manage is the emotional side effect. I can find myself getting emotional without a real reason. I work hard on this. Felice will tell you that my outlook, attitude and emotional makeup is so much better on days that I feel good. It’s true, it’s so hard to see beyond the collective impact of the side effects when they are piling up on me. It’s those days that I tend to really struggle.
Well intentioned people will tell me to stay strong. I appreciate the intent, but what does that really mean? I think in reality, it means they really have no clue what to say, so they go to the comfortable fall back about staying strong. Honestly, I struggle with what the definition of strong really is, when it comes to this little battle I’m involved with. Is strong supposed to be that I try to act as if these side effects aren’t real and shouldn’t be impacting me? I really struggle. That brings me to my friend Megan. I’ve known Megan for almost 20 years, mostly peripherally through the relationship I developed with her husband and my very close friend, Rocky. Rocky and I met after being paired together in a CEO Peer development group, now known as 10XCEO. Rocky has a huge personality, packed with charisma. We were both street savvy entrepreneurs that had started our company’s on a shoestring in our early 20’s. We were both teetering between success and failure, but only knew what success looked like and knew we needed help. We were put in a room with proven CEO’s, Harvard grads, MBA’s. Another one of our early members was one of those more pedigreed CEO types, Les. He rounded out our core trio. Of course there were a number of other wonderful relationships forged, including our inspirational leader, Mark. Those years of quarterly official meetings, often interspersed with mid quarter get togethers became the backbone to my personal and professional development and had a direct impact on the growth and success on both of our companies. I believe that sometimes we forge unusual relationships and the basis of that relationship extends into aspects that we never would anticipate. A little over 5 years ago, Megan was diagnosed with a rare form of kidney cancer. At that time, my sister Margie, was in her later stages of her ovarian cancer battle, so the news of Megan’s diagnosis hit close to home and was the cause of great concern. Megan is a badass! She and Rocky set off to find the best medical care and the best treatment plan they could find while trying to maintain normalcy for their two children that were still at home. Our trio from the CEO Peer group planned a couples trip to Carmel after our annual conference in Santa Clara in the fall of 2013 with spouses. It was the first time that the 6 of us had ever gotten together as couples and was a perfect time to get away. My sister, Marge had passed away in July of that year and between her death, closing up her apartment and dealing with her estate, it was a timely getaway. While Rocky and I were sitting in the conference, he received a text from Megan that her recent scans had shown a reoccurrence. It was her first reoccurrence and that sent noticeable shockwaves through him. He left the meeting, but they decided to continue on with our plans to go to Carmel for the weekend. After witnessing the emotional roller coaster that Marge had gone through with every scan, every report, I had just a small sense of what Megan was going through. Megan showed what a badass she was that weekend. We went out for great hikes, had great meals, plenty of shopping time and Megan acted in a way that I couldn’t comprehend. I expect when in private, there were a lot of emotions, but she was badass – best term to describe it. I fast forward now almost 5 years. Megan has gone through treatment after treatment, often difficult and painful treatments, far from home. Often times having to be hospitalized in the ICU for days during the treatment, and then living as normal of a life as imaginable in between. Megan and Rock were hoping to come visit us at the lake this summer. My bond with Megan has grown ever deeper since my diagnosis. I began to feel that Rocky had come into my life for a greater reason than just to be my CEO Peer. He brought Megan into my life as a definition of strength. Megan started having some pretty bad pain in her hip as a result of treatments that she has undergone. They needed to defer the visit to Wisconsin and deal with that. In early September, Megan’s platelets (critical blood number) dropped precipitously, requiring her to be hospitalized shortly after Labor Day. She was transferred over to John Hopkins and placed in their ICU. It was an immune related disorder that was as rare as her cancer. The docs struggled to figure it out. They were consulting with the best hematologists in the world trying to create an action plan. She remained in ICU for the following 6 weeks. During that time we went to DC before I was scheduled to come here to Houston to begin this trial. We had hoped, when we planned the trip, to be able to get together with them, as we were getting together with Les and Michelle (Les’s wife) and another one of our peers and close friends – Deepak. Of course, that wasn’t feasible at the time for them to be with us or us to visit them. During dinner, I missed a call from Rocky. I noticed that and my heart sank a little with worry. I immediately went outside and returned the call, only to hear Megan’s voice. The transfusions had given her a lift and hearing her voice was such an uprising moment for me. My heart felt for them as friends, as parents, as people. I haven’t spent a night in the hospital and couldn’t relate at all to what that must be like, but I know for certainty that the hospital is no where near the comfort that home brings. Her spirit and attitude were so positive. We talked about a lot of things in those ten or fifteen minutes, but the comment that came out that rang so true is that cancer is a partnership. I had commented on how great Rock was and how fortunate I am to have Felice caring for me every step of the way. It is a partnership. It’s a hard battle and our caregivers take a lot of shrapnel. We talked about taking each day as they come and pushing ahead. Later she sent me a text with a quote from Muhammad Ali: “Don’t count the days, make the days count!” Now that is some powerful shit! After close to 7 weeks in the hospital, almost all in the ICU, Megan was released. She was so excited to get home and was going to make a brief appearance at her son’s Engagement party. I was so excited for them. Unfortunately, later that day, her blood pressure took a big drop and she had to return to the hospital; disappointed, frustrated and scared. She remained in the hospital, again, mostly in ICU working to figure out her platelets, and other symptoms that were causing discomfort and uncertainty. Undergoing tests, infusions, treatments to get try and get her healthy and stable and ready to face whatever was next. On Tuesday, October 30th, Megan was released.
Her platelets were back to normal, still plagued with other symptoms that were creating discomfort, but stable and her scans show NO ACTIVE DISEASE. I’d be lying if I said it didn’t bring tears. I sent her a text expressing my joy and happiness for her. She responded ‘It just shows that you have to go through a lot of crap to get some good news!!’ Come on man! This woman has gone through so much over the last 5 years and maintains an attitude that I strive to adopt. I responded ‘Shows a lot more than that Megan. It shows that you are definitely a badass. ‘. That is a known. It also shows that she sets the definition of strong. I know what strong means.
So now I’ve had my labs, I’ve had my scans and I wait until tomorrow to find out what is up. I feel great today, felt great yesterday. Megan is having a procedure done to attempt to alleviate her other symptoms. To those that pray for me, please pray for Megan.
Also want to thank both Megan and Rocky for allowing me to share their story. Not everybody wants their story to be shared, I asked her to let me share because I felt that all of you would appreciate the inspiration and strength that she provides, I know I do. These both are very special people!
I’ll be back in touch soon to share what’s next for me.
Thanks for all your continued text messages, emails and phone calls. Your support, your prayers matter.
Mike #ShaneStrong #CancerSucks #CintronStrong #Megansabadass