Monterey Lone Tree
“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.
Lori,
To keep hope alive what do you feel about Black Swan initiative? They seem to be looking into MRD tests and cure.
I think it is a VERY worthwhile effort! Currently the tests we run for CR are not as comprehensive as Stringent CR and MRD appear to be even more in depth. I would imagine that if we could get these tests run in an efficient, non-invasive, cost contained way, our MM researchers could be more pro-active in treating/managing our MM. http://myeloma.org/PortalPage.action?tabId=8&menuId=366&portalPageId=18
Shelley, I totally agree. I too have done my rounds of doctors & dentist appointments that I put off for 2-3 years. Now I am trying to do something for my weight which was so not a priority for me for those 3 years. I hope you can accomplish something with the education. It still is a small community….though at times it seems large.
Lori, as always, Thank you.
Ahhh Shelley. Thank you for your response. I feel very much aligned with everything you shared. I remember trying to get caught up on my own doc appts after we finished treatment with Dave. It’s so typical of us to give and give and be last on the list. It’s just to overwhelming sometimes to do it all. I’m glad you are taking care of yourself and I’m glad to hear from you. And I will certainly give Dave a hug. 🙂 He deserves one this morning as he left the lights on his car all night. 🙂
Thank you again, Lori for sharing from your heart. This week has been sad for me with Hanna’s passing and also another member of our local support group passing too. He was the husband of a woman that I used to work with and the first time that I had ever heard about MM. Little did I know that a year later my own husband would be diagnosed with this horrible cancer.
Angie, I too have pulled back from the MM world, at least for now. I find it very painful to read about others that are responding so well to treatment. It is a very mixed feeling. I am so happy for them but then so sad that my husband suffered so much in such a short period of time. Yet though all of this I feel a very strong pull to educate the public and the healthcare field about this cancer. Too many people including nurses, etc. have never even heard of it. One of our close friends that is an ER nurse said that she has only ever had one patient with MM her whole career.
Right now I’m finally trying to take care of myself. I’m trying to play catch up for all the doctor appointments that I have pushed off for 2 years. And also trying to put one foot in front of the other just to get through each day.
Please give Dave a big hug from me. 🙂
Thank you so much sweet friend!!!!
I had already drafted this post before hearing that Hanna had died. I did know that it was coming, but you still hope that it can be miraculously turned around somehow. I know that she was spending her last days with her family and gardening. She wanted to be home and I was glad that she was doing the things that brought her peace and joy with those who she loved dearly. Her passing only reminds me of all the valiant people we have lost and that at times it appears there is no end in sight. The weird part is though, that I’m so glad to not endure this alone. Friends in Myelomaville or just friends, seem to offer comfort in this journey. Even when its good and especially when it isn’t. Knowing that Mike’s battle was coming to a close and that you were right there, by his side, for however long it took and supporting whatever decisions he was to make, gave me solace and courage. I’m sure as you move on there is a pull to stay connected, and that you will do what feels right for you, each and every day. I’m happy to know you on our journey as well. Bottom line, we just need one another to sort through some of those thoughts that pound around in our head late at night. We are forever changed. Hugs dear friend.
Lori….I fall into the 2nd category. Since Mike’s “healing” I have withdrawn from the MM world (FB sites, blogs) with the exception of the many friends that I have on FB. But I had just heard the news of Hannah and it breaks my heart. She was definitely a warrior. Thanks for doing all you do to help others in this crazy world. Big Hugs. And so grateful that I got to know you on our journey!