cherie-rineker-newBoy, what a year it has been! At the beginning of 2018, things did not look so good for me. We ran out of treatment options, and I decided to throw all of my faith into a clinical trialA CAR-T trial! One where my own T cells were used to attack the multiple myeloma—which had been stubborn, relentless and aggressive for over five years. Close friends around me have since told me that they didn’t think I had more than a couple of months left, something I was very aware of myself. Yet, against all odds, I got into the trial in the nick of time, and by early April there was no detectable myeloma. NONE! I was given a second chance at life and am determined to make the absolute most of it.

I have been an unofficial advocate and spokesperson for myeloma patients for years, simply because I know how important support is, and because I want to bring awareness to the general public as well as hope to my fellow patients. I was honored when Celgene, the pharmaceutical company that conducted the trial, allowed me to come to their facility and gave me the opportunity to share my story and gratitude for the work they’re doing for all us patients. 

I was also invited by Janssen, another pharmaceutical company that gave us daratumumab (Darzalex)—a drug that bought me six months, to offer input as to how they can help patients navigate through this difficult disease.

Through these opportunities I have come to understand how much these companies do for us. I once believed that chemo killed, that vitamin C could cure cancer, that big pharma was bad, and that holistic medicine was the way to go. I have evolved to understand that big pharma is NOT hiding a cure, that vitamin C should be taken through the food we eat, and it does not cure cancer. I have learned that companies who make supplements want to make money just as much as pharmaceutical companies do, but they often do not have the science to back up their claims. Sadly, this means that a lot of people throw a lot of money down the toilet, literally, as they are peeing away the vitamins the body cannot store at such a high rate, while wasting precious time by forsaking medicine that can buy them more time.

Additionally, I have learned that the best way to live life is by doing everything in moderation except for love. To not be so hard on yourself or others. To be quick to forgive, slow to judge and to be kind always. We do not know the journey of our fellow men, we have not walked in their shoes, so we should help where we can and let the rest be. We all have our own crosses to bear; for some the burden is physicalfor others financial and still others have relational problems. Not one is easier than the other. 

I was asked by a myeloma patient why I was doing all this “Facebook stuff,” in a way that implied I might be wasting my time. He seemed like the kind of patient who had his stuff together. He was from the generation where you did not talk about stuff like this. I am glad he had the family and financial support he needed so he didn’t feel the need to share his experience, but I know many of us need more support than we get at home and for those I wish to be a soft place to fall.

Our Facebook community is incredibly important to me. It takes a tribe of people that understand, to talk each other through the hard times. When you are weak, I lift you up and when I am weak you do the same for me. Know that I am always here to share with you the things that worked for me, to give you words of encouragement, to even help you connect with someone who may have the answer when I don’t. I am not a physician, I can’t diagnose or treat your disease, but I can help you carry the burden, and sit with you silently while you talk, holding your virtual hand.

Let’s go into the new year with LOVE and HOPE knowing we never have to be alone in this battle.

Cherie Rineker, author of A Pilgrimage Without End, How Cancer Healed My Broken Heart, lives with her husband and daughter in Southeast Texas. She is currently working on her next book, A Pilgrimage Toward Health, Keeping Hope Alive.

You can contact Cherie at www.cherierineker.com

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