Sleep on Monday night was hard to come by. Our flight was canceled from CVG to Houston. Not really a big deal, but the schedule was already tight on Tuesday. Dr. Wolff had warned me that they are even busier than usual right after holiday weekends. Sending him a text on the Monday night of a holiday weekend to move my schedule around created some anxiety, but he responded that he would get things taken care of. Still sleep was unlikely. I was so excited, nervous, and anxious that sleep wasn’t happening!
Fortunately, Tuesday’s flight was flawless and we pulled up to MDA at 11:30. It was crazier there than it has ever been. Blood work that usually has about a 5 minute wait time was about 1/2 hour. A elderly man named John sat across from me as I was waiting for labs. His wife, Delores, was a couple seats away in a wheel chair. Their daughter, probably about 60 was with them. Delores was clearly uncomfortable and barking orders to her husband, John. That’s how i found out their names. It’s not as if we all walk into the lab waiting area and introduce ourselves :-). She wanted a straw for water. I thought they wanted water. There is a water machine close by, I offered to go get them water, but they pointed out that they had a bottle of water – they needed a straw. John was clearly stressed about satisfying and comforting Delores. The daughter just sat there, I guess somewhat numb that her mom was not happy. The lady sitting next to Felice interrupted and said that she would go to the cafeteria and get them straws. Wow – humanity at work! A few minutes later, she came back with a fistful of straws. John was trying to put 2 of the straws together so that they could reach the bottom of the bottle. By now, Delores had her daughter emptying this large ‘beach bag’ filled with sweaters, and all types of supplies, to find their straws. At the bottom of the bag was a straw. It was a long straw, able to go to the bottom of a tall bottle of water. This made Delores happy. Delores is clearly suffering from painful mouth sores and wanted to drink some water and needed the straw to be able to avoid having the water touch her mouth sores. Everybody around Delores could sense her discomfort – all wanted to make her comfortable. It’s just so wonderful to see humanity working – every visit it appears in some way. Caregivers with patients – all here for the same general reason – cancer! Some frustrated like Delores, some reaching out to sooth her frustration, like the nice woman next to us. John received a phone call – it was Dennis his friend, checking in on them. I only know this because the whole room of over 100 people could hear he was talking to Dennis :-). After the call, he yelled over to Delores that Dennis said to give her a hug. Delores then went back to have her blood work drawn. When she left, she smiled at all of us. Their little entourage smiled at us, waved, wished us well. I called over to Delores and wished her well. Then called over to John and reminded him that he owed her the hug from Dennis. Paths crossed and moments shared, with no thought to age, race, religion, politics, nationality or otherwise. The only hatred here – cancer!
We’re all in the same place, all with a common fear. It’s so humbling, the experience is overwhelming. The elderly woman volunteer that is playing the piano in the lobby, missing more than an occasional note, but passionately bringing music to those that sit and listen. She’s just doing what she can do to soothe those that need soothing.
I can’t share with you all how fortunate I am to have found MD Anderson. Yeah, it sounds dramatic. I’m certain that if not for the various things that led me to MD Anderson, I would not be where I’m at. Don’t get me wrong – there are great things happening at cancer care centers everywhere, every day, but there are certain events that occur in life that could only occur in particular circumstances and for my cancer at this moment, those circumstances could have only occurred at MD Anderson. After my bloodwork, fast forward an hour to my scan prep. Leslie, my radiation tech, is going through the prep routine. We were talking about my blood work, my radiation experience, my miracle. She has been at MD Anderson for almost 12 years. She told me that many times a day, she is with patients that come to MD Anderson with bleak outlooks, prognosis like mine and worse that get their disease in control, become NED (No Evidence of Disease – fka remission) or complete cures. It’s what keeps her loving what she does. She’s for real. She’s genuine. She loves being a part of seeing patients live. She moved to Houston to get a job there. She worked at other places in Houston to wait for the opportunity to be there. We’re all in the same place – all with a common enemy – cancer!
Leslie was checking numbers from my blood work, which were already starting to post in the system. She printed them off for me. I was excited to see another big drop in my primary marker C19-9. I scoured the rest of my blood work, later spending a lot of time comparing various parts of the report to be prepared for my meeting with Doc Wolff today.
Unfortunately, while my markers have dropped and all my metastatic activity remains inactive, there is new activity in my liver. The Doc said that my Abscopal response appears to have been transient, although they know so little about the Abscopal effect, that it’s difficult to really speculate. We now appear to qualify for the trial that I didn’t qualify for before and Dr. Wolff feels that now is a great time to give that a try. So we’re back on to a treatment path.
I have been blessed with this miracle that gave me the last couple months free of the cloud that is cast by being in treatment. I have been blessed with the miracle of eliminating so many of the threats that this disease presented me with, through whatever Abscopal response I have experienced. I am healthy and strong and will enter the treatment with optimism of great outcomes ahead. Of course I am disappointed that I don’t get a free pass to being cancer free. I am well aware of the emotional roller coaster that we are on. While my family urges me to have reasonable expectations, I call bullshit! They’re very involved and are extremely supportive in every way, but they’re playing the game from the sideline. I’m in this game and on the field all the time! I play to win – all the time. That’s the only way I know how to play. That means that my expectations are to win. Of course, in this game, there isn’t a straight pathway to victory. There are setbacks, but we moved many steps forward and are taking small steps back.
So now we’ll celebrate another month or so before treatment starts. The celebration tour begins with a quick trip to Chicago to see our kids, go to Hamilton and Billy Joel. Then off to Indy to connect with some of my Indy fraternity brothers and catch the Colts and Bengals with some of my kids. We’ll be back to Houston late next week for pre-trial tests with the hope of beginning treatments later in the month. Weekly visits to Houston for a while that will gradually change into every three weeks.
Every step, every turn in this journey brings a new appreciation of Now – the moment! I once again have the taste of what feeling good feels like and I want desperately not to lose that. Unfortunately, the side effects of the treatment are going to take some toll. So far, I’ve been fortunate to have managed through those side effects reasonably well in prior treatments and am resolved that I will continue to handle the side effects as well as possible.
Both Felice & I appreciate the way that our community and our friends from near and far have embraced our challenge and feel so fortunate to have your continued support as we take on this next chapter. The support, the prayers, the positivity all matter. I know this to be true! Your notes and texts, the phone calls all matter too! I will continue to update as we move forward.
Mike #cancersucks #ShaneStrong