Football season is coming up fast, and as a former (very former) player and lifelong fan, I can’t wait! It’s just the excuse I need to sit on the sofa in a chemo fog and not think about what else I could or should be doing.

In Hawaii, televised football games start at about 7:00 a.m. in the morning, so I can waste five hours and still have time to take the kids to the beach in the afternoon.

Amazingly, I find some similarities between football and my experience with multiple myeloma. Maybe it’s not really amazing; I actually find analogies with myeloma and lots of things.

On your typical professional football team, you have your owner, your head coach, your quarterback, your other starting players, and many unknown players. Each one has a role to play, and each one has to play their role well to achieve victory.

What often happens, though, is that the people who fill these positions try to perform some of the other roles besides their own.

For fans, who hasn’t heard of an owner acting like the head coach? Likewise, the quarterback sometimes tries to be the head coach by changing a play – often with disastrous results. I love it when one of the big linemen tries to pick up the football and run with it, only to lose it three seconds later because that just isn’t their role (and their hands are taped into giant clubs!).

Of course, it is ultimately the owner’s role to put together a good team, yet many owners consistently un­der­per­form when it comes to this key responsibility.

All of these scenarios end up with the team either suffering a bad play, a bad game, a bad season, or (sorry Detroit and Cleveland fans) a bad era.

In my experience with multiple myeloma, I have consistently had to remind myself of what my role is and how best to play it.

My inclination is to want to be the quarterback. I want to know the intimate details of each play (treatment or test) and determine exactly how to make the most of it. This usually doesn’t work very well because I am not a medical expert, and as much as I would like to be one, I just don’t have the training or background to be in charge of each play.

Instead, I have found that I need to behave as the owner. Makes sense, right? I am ultimately responsible for my care and the outcome of my disease. When I actually do this well (not very often), I get the best results.

My head coach is my primary oncologist in Hawaii. He knows my team the best, and I rely on him to work out strategies with me to achieve our goals. He knows all the players and is an expert at the game.

My quarterback is a multiple myeloma specialist on the mainland. He is a star who is very good at what he does, and he needs to lead my players to victory.

My remaining starting players are the wonderful nurses, technicians, and receptionists who directly affect how my day is going.  My unknown players are the countless folks behind the scenes who make my care even possible.

Recently, I went to have my stem cells harvested at a large cancer research center and transplant facility in Southern California. This center attracts a lot of talented doctors (players). The myeloma specialist as­signed to my case is one of those great talents, and as such, I happily gave him the role of my quarter­back.

Unfortunately, as sometimes happens with these stars, my myeloma specialist has been reading too many of his own press clippings, and he began acting like the owner of the team.

As any fan can tell you, it’s not an easy task to reel in the ego of your star quarterback and remind him that you, the owner, are going to make the decisions about this team (your care).

In my case, my myeloma specialist was doing a lot of telling me how I was going to be cared for, and not enough listening about how I wanted to be cared for. In his desire to employ his talents and knowledge in regard to my disease, he forgot that multiple myeloma is a very individualistic disease.

I felt his treatment approach was based just on the “current standard of care,” and not based on my in­di­vid­ual needs. This is not only potentially physically damaging, but mentally it really takes a toll on me. I need my doctor (quarterback) to understand my individual case, not just my disease.

For example, the myeloma specialist insisted that I take blood pressure medicine during my chemo infusion before the stem cell harvest because the two readings in his office were elevated.  He didn’t listen to me when I explained that I consistently have normal or even low blood pressure.

Maybe the two elevated readings happened because I just walked across their giant hos­pi­tal and was taken immediately to the blood pressure cuff. Even more importantly, I was alone in a strange city to get a very in­vasive procedure that scared the heck out of me!

As the team owner, I had to tell him no. I would only take the drugs if my pressure was elevated in the hospital during the procedure. I knew it wouldn’t be, it wasn’t, and I didn’t receive the blood pressure drug.

After my stem cell harvest, he told me what medication I was going to take as maintenance therapy without asking me about my past side effects. Namely, he decided that I would be taking Revlimid ^[1] (lenalidomide) plus dexamethasone ^[2] (Decadron).

Once again, I had to tell him no. I told him that, while I understand the current standard of care includes dex, I don’t like the dex and will only take it if necessary. Since I hadn’t taken Revlimid alone yet, I wanted to see how my cancer would respond to it without the dex.

My Hawaii oncologist (head coach) agreed that there was very little downside to this strategy, so that is what I am doing. If the Revlimid doesn’t work alone, then I will add the dex. So far, the Revlimid is doing just fine by itself.

My star quarterback wasn’t happy about being told no, but in the end he seemed to be a little more willing to listen to me. I don’t doubt that he had my best interest in mind as he sees it, but he didn’t have all the data to know what my best interest is.

It is up to us, the owners of our teams, to listen to the information our coaches and players provide us and to use this information to make the best decisions for our team. Once we make these decisions, it is up to us to let our players and coaches do what they do best – treat us.

It’s great to have a star quarterback on my team, but he can’t just do whatever he wants. Sometimes, the star can become a detriment to the rest of the team, and it’s up to me, the owner, to send him packing if this hap­pens.

The goal for my team is to ensure that I have as happy a life as I can with whatever time I have left. I will take whatever measures I need to extend my life until my boys are old enough to better deal with my death, but not at the complete expense of our current happiness. You have to know what the goal is for your team.

Many doctors only see a disease that needs to be treated instead of a life that needs to be lived.

My team is going to continue to fight for this happy life. As an owner, that is my victory.

Aloha and carpe diem!