“A piece of me goes with them.” – Lori Puente
We lost another giant soul in Myelomaville last week (Hanna – Margaret’s heartfelt tribute). Some of us knew it was coming, but it still hits you hard. Every time this happens I feel sadness and meloncholy. Each time someone relapses and goes back for more chemo, more “new” drugs, my shoulders sag just a little.
I struggle to fully embrace Dave’s remission at times, and that he’s doing so amazingly well. That he’s happy, productive, loved. That he’s in better communication with his children than he’s ever been. I struggle like a young mother with her healthy newborn baby in her arms as a dear friend who just had a miscarriage comes to offer her congratulations and see the new member of the family. It’s bitter sweet.
I’ve made a lot of new friends on this journey and I’ve lost a lot of them along the way. It’s a constant reminder that this disease makes no sense in who it takes and who it let’s linger longer than others, with or without complications, and who are the few who get to go for the long haul. The ones that are an inspiration to the rest of us. The ones we looked for in the beginning. The ones who let us know that it is not a 100% that all who have Myeloma will in fact die in short order.
I continually remind myself of these facts when I’m struggling:
- I am grateful beyond measure for all those I have met before and during our personal cancer journey. Those who have cancer whether it is Myeloma or something else. They have enriched my life in ways I would have never predicted, expected, nor imagined.
- Dave and I struggled very hard, with a lot of support from complete strangers who have rejoiced in our victories and helped me through all the rough spots.
- I have shared with others all that I have to give.
- I have rejoiced in the victories you all have had and held you in my thoughts through the scary moments.
- It is inspirational to me when I meet those who are long term survivors. It was one of the most important things I did early on – find survivors of Multiple Myeloma. It continues to give me hope as I know Dave’s current stability gives hope to others.
- It is important for Dave and I to give back and be an inspiration to those on this journey. That no matter how long it lasts, we will have done that.
- Those whose loved one didn’t make it continue to offer inspiration with their strength and courage. Seeing them put the pieces of their life together in a new way with such grace while reaching out to others who share in this particular part of the journey, makes me feel less alone and less afraid of my future.
“The glow of one warm thought is to me worth more than money.” – Thomas Jefferson
These are the things that rattle around in my head when I feel this yin and yang of being grateful and happy, while being respectful of my many fellow Myeloma Warriors who have passed away and their amazing Caregivers as they keep riding the wave.
One of the things that Dave and I have realized and shared is that no matter what happens down the line, we have no regrets. We are happy for blessings that we have encountered in ourselves and each other. Those whose journey we have shared – our children, friends and family who have taken this trip with us. I went into this “blogging/sharing” thing with my eyes wide open. I knew that putting myself out there would carry a certain responsibility. I wasn’t so sure I was up for it or that it would be well received. It has been undeniably rewarding and I wouldn’t have met the amazing people I have if I hadn’t. The balance still tips in favor of meeting fellow warriors, without a doubt.
I also understand why some of us pull back from forums, support groups, blogs. When we see others newly diagnosed and feel their fear and uncertainty it taps into our own experience and makes us feel sad or troubled. When someone we became close with passes away we experience the loss. I think it’s important to pull away when you are feeling these difficult emotions. It doesn’t mean to me that somehow you are failing “the group”. Your primary concern is to keep yourself healthy and happy. (It is why I don’t share much of this stuff with Dave. He isn’t as connected to the journey of others with Myeloma. Although if I include him in a dinner or lunch with a fellow warrior he is always extremely happy to meet them and talk.) Joy, and less sad emotions are paramount. So please, take your break without guilt or worry. We will miss you, but believe me, we understand. The door is always open if you feel like checking in.