Riding The Wave – Multiple Myeloma

Me, Jan & Margaritas

“Promise me you’ll always remember: You’re braver than you believe, and stronger than you seem, and smarter than you think.”  – Christopher Robin to Pooh (A.A. Milne)

When Dave and I were originally scheduled to go to Little Rock in February, we were disappointed we would miss Jan & Bruce. Then Bruce was out of remission and it looked like we would see them as they were re-staging him to begin treatment again. We were sad to hear this news, but happy we would see them. Then our doctor went out of town on our scheduled appointment, so we opted to delay our visit for Dave’s check up. Finally we made it and again, we are sad that Jan & Bruce are still battling “The Myeloma Beast” 3 months later, but happy we would get to see them after all.

It’s a bit magical how things work out at times. I flew in late Saturday and met Dave who had flown in from a meeting in Connecticut. Jan and I met up Sunday after lunch. What began as a Starbucks rendezvous changed to a walk across the lot to a mexican restaurant instead. The Cantina Laredo to have Margarita’s in the bar. A much better choice, I must say. It was Jan’s first day off in 3 months shuttling Bruce back and forth to the clinic or trips to the hospital (he was admitted twice – ARGH!). It was PERFECT timing.

Due to Bruce’s suppressed immune system and generally feeling lousy, and Dave with back to back conference calls (did I mention he works too hard?) it was a girl’s afternoon.

Jan & Bruce are very special to me. Jan began emailing me after Bruce had failed treatment at home. I encouraged them to go to Little Rock for a third opinion, just so they could compare what they had, what another facility suggested and then Myeloma Guru Barlogie’s take on things. After many emails and eventually some phone calls, they packed up the car and headed to Arkansas. Bruce would often tell folks that because of me and Nick Van Dyke he was alive. I respond, “No, it’s because your wife contacted me and Nick and wasn’t taking this lying down!” We always laugh. Needless to say, we are all distressed that Bruce’s remission was only a year. He is High Risk and aggressive. He responded so well and was feeling so great that we all really felt that he had beat the beast for a lot longer. It is disheartening, and that is putting it mildly. It reminds us of just how brutal and nasty this disease can be. However, I remain hopeful for Bruce.

Along that lines, today while waiting for Dave’s bone marrow aspiration to get done, I overheard a lady telling other patients she was 14 years out from her diagnosis! Woohoo! But what she said next was very intriguing to me. She said, the first 10 years were hell. She didn’t think she would get through it. OH MAN! A whole DECADE of treatment on and off? That is brutal. She went on to tell this other couple, “I always tell people not to give up hope. The last four years have been heavenly and I don’t even think about it anymore and live my life. Only when I get a call to come back for tests do I remember, I have Multiple Myeloma.”

If only we could know that if we did this or that we would come out the other side to have some quality of life. Therein lies the rub for many of us. We are hopeful, we want to be one of “those” folks who get through it and have a life we enjoy after the onslaught of treatment. I don’t know about you, but I wouldn’t want to die in a hospital far from home and family, trying to beat this thing. These are very hard things to wrestle with. When do you say, enough? When do you say, stop? When do you give up treating without feeling like you are giving up? These are all questions we may or may not have to deal with. A whole other topic to write about.

Boucle, open weave, scarf

Anyway, my meet up with Jan was GREAT! She looks fantastic! She has a great sense of humor, good insight and instincts. She is an amazing caregiver who is knowledgable and tenacious about making sure that Bruce is getting everything he needs, as prescribed.

Today I popped up to the infusion center to see Bruce while Dave was getting his two hour MRI, hoping to give Bruce a little “Lori cheer”.  He’s lost some weight, but to me, he looked great. I’m praying for some good news for him this week.

Wednesday we will go in early so Dave can visit Bruce before our doctor appointment. The boys want to see each other.

And of course, I had made a scarf (or two) for Jan. She loved it and again the magic, she was wearing a sweater that perfectly matched the scarf. It was fun. So while I hoped to bring a little sunshine into her day, she brought much to mine. As Jan says, “one of the blessings of Myeloma,” the friends we meet along the way. She is definitely one of mine. Thanks Jan, for being my friend.

Tags: Jan & Bruce, Myeloma Meet Up