So, here is my reality: I do not like eating beets. And I do not like having multiple myeloma. 

However, there is a huuuuuge dif­fer­ence be­tween the two “do not likes.”

With the beet issue, I can choose to not buy beets at the grocery store. Problem solved. Beets can be avoided.

Not so with multiple myeloma. I cannot choose, or at least I did not have a choice in getting, multiple myeloma.

No beets is easy. No multiple myeloma? Not so easy. See the dif­fer­ence?

When I was first diag­nosed with multiple myeloma and during the sub­se­quent six months of induction ther­apy that led to my stem cell trans­plant, I was in a fog. I just did what the doctors told me to do and lived a very structured, and scared, life. 

Managing the dis­ease and my physical well-being was definitely put into the hands of the doctors and nurses who were going to oversee my treat­ment. They advised me re­gard­ing nutrition, exercise, and of course anxiety (big problem there). There were not too many de­ci­sions made that did not in­volve­ input from them. I had to place my trust in them. My sur­vival was at stake. If they had told me that howling at the moon would be beneficial, I would have spent a portion of each night howling at the moon.

The desire to sur­vive was and still is strong. Everything that was encountered, con­sidered, and ac­cepted during those first six months was viewed through a perspective of “Will this help me to sur­vive?”

Everything. 

I wanted to sur­vive, I did not want to die. Accepting that my life was going to require ad­just­ments because of the myeloma was under­stood. However, it was sec­ond­ary to my desire to sur­vive.

To give you an example of how that desire made me crazy, the weekend before my stem cell trans­plant, my wife and I decided to get away and head up into the mountains (no, we did not go camping, I do not like to camp; but I digress). Prior to leaving, I needed to swing by the hos­pi­tal to give yet another blood sample.

Later that afternoon, while trying to relax in the high country, I got a call from the hos­pi­tal. The mes­sage let me know that one of my blood numbers was a bit off and that I might have to wait another two weeks to move for­ward with the trans­plant. Well, the mes­sage I heard was “Your numbers are off and you are going to die. Today!” Ahhhhh!

I called the hos­pi­tal back right away. It was my turn to leave a mes­sage. Waiting several hours for them to call me back gave me further evi­dence (as if I needed it) that being treated for multiple myeloma does not even put you close to being the center of the universe.

When the doctor finally called me back, I im­medi­ately launched into this tirade where my fear and un­cer­tainty were front and center. “What does it mean that my numbers are not perfect? I am dying here. I need help, I need comfort. I want to sur­vive!”

Gratefully, the doctor did not hang up. He came right back at me with “Yes, you are going to die, but for crying out loud, we are all dying!”

He went on to say “What you will die from and when that will hap­pen is frankly some­thing we have no idea about.” He added, “Let me assure you that if we did know those things, we would tell you! So slow down, relax, and listen."

"You are fine," he con­tinued. "You have multiple myeloma [hearing someone else tell you that you have multiple myeloma is never a “light” moment], and we are treating it to the best of our abilities. We feel good about your case, you have responded up to this point as we would like you to. We will move for­ward with the trans­plant. We want you to sur­vive. However, nothing is guar­an­teed. We are on the same page here, partner. Let’s see what hap­pens.”

I remember that it was at that point I finally felt that he under­stood my sur­vival instinct, which was very high. I was humbled and somewhat embarrassed. As I write this, I want to cry because I now realize how lucky I was to have this doctor and his team in my corner. They under­stood that I wanted to sur­vive. They provided me with comfort. What a deal.

Very early on in your multiple myeloma journey, you learn that there are no guar­an­tees when treating this dis­ease. What works for some may not for others. Our “control” is minimal. But I needed some­thing to hold on to, some­thing that would keep me going. For me, it was sur­viving this chal­lenge each and every day.

Now that I've taken some time to reflect on sur­vival (in this one-day-at-a time universe), it is apparent that sometimes it’s hard, sometimes it's not. Sometimes it's painful and scary, sometimes it’s not.

Hmmm, it sort of sounds like life before multiple myeloma.