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Living with Myeloma: The Blessings of Birthdays
Posted: Aug 27, 2017
Living with Myeloma: The Blessings of Birthdays image

BY CHERIE RINEKER Imagine living your life as healthy as you can. You make all the right choices and eat your veggies. Heck, you even become a vegetarian. You read that eating an alkaline based diet gives your body the environment in which pathogens and cancer cells can’t live. You practice yoga, meditate and pray. You hike, bike and swim. You mind your words and your thoughts, letting go of any negative emotions, replacing them with Love and forgiveness. Your job is one of service. You help people make better life choices. You practice what you teach others, and yet, your body starts giving you more and more problems. I first ended up in the ER with the flu, January of 2012, something I had never been diagnosed with before. Next I got a nagging cough that just did not want to go away. I was walking around with a low grade fever, yet the pulmonary specialist couldn’t find anything wrong, and my regular doctor brushed it off as asthma. At the same time my back, which had given me trouble for quite some time, started to get worse and worse. I was experiencing severe fatigue like I had never felt before. I blamed many of my symptoms on the fact that I was a massage therapist and a single mom, working long hours wanting to do it all. One day a coworker tried to help me with my back and while he massaged me, we heard a loud pop followed by incredible pain. This later turned out to be a broken rib. Still, I did not like doctors. The holistic movement was so ingrained in me, that I reached out for herbs, green juices, acupuncture and chiropractors. The pain did not get better, it only got worse. One morning I stretched in front of the mirror and as I raised my left hand above my head, I heard another pop, which turned out to be another broken bone. The pain became relentless as it moved from one place to another, places where my bone was being destroyed by the cancer. For a week I could not raise my hand to grab dishes and food from the pantry. I barely made it up the steps to my apartment. I decided to go to the doctor again, yet they couldn’t find anything wrong. They look at me suspiciously. I look too good to be that sick. The pain pills I ask for must surely not be as necessary as I say they are, and I get the lowest dose which barely touches the pain. After living this way for six months I say enough is enough, and my friend takes me to the ER. Two hours later the doctor walks in and without looking at me tells me I am severely anemic and have cancer. The CT scan I had asked for six months earlier, but was refused because “Insurance companies frown on expensive tests”, found three tumors on my spine, and the ER doctor can’t believe I am still walking. He wants me to stay in the hospital, but I have to go home to my baby, who just turned seven, and needs her Mommy to feed her, and tuck her in. In November of 2012 I was finally diagnosed with Multiple Myeloma, a rare blood cancer that attacks the bone, is incurable, but treatable. Because I was young and healthy, the doctors didn’t seem too concerned, and assured me that these days many Myeloma patients could live ten years or more. Frankly, when you are 44 and your daughter is seven, ten years barely sounds like a good deal, but, with my healthy lifestyle, I figured I surely would be one of the lucky ones. The oncologist told me I would have a few induction chemo rounds to get me ready for a stem cell transplant, which would likely put me into remission. It is never good to think about what could have been, but we all go there. What if they found the tumors six months earlier, when I went to an urgent care and asked for a CT scan? Instead of Stage III, the worst in Myeloma, I might have been diagnosed at stage II, or even stage I. This would have made my outcome much more positive. Now here I am, four years and nine months later, with no treatment options left. I have never been off chemo during these years, other than a couple of weeks here or there because I wanted to go on vacation, or to give my poor immune system a chance to recuperate. In 2012 we all had such hope! Multiple Myeloma research had come so far and there were many new therapies that would surely buy me many years. Sadly, I am one of those unlucky patients who went through these novel agents at a ridiculous speed. Within months, one promising drug after the other stopped working, and we would move onto the next, until there was no more next. We never could have guessed that within five years I would go through every single chemo cocktail. Lucky for me, there is now a very promising trial going on. The Car T trial, which uses the body’s own T cells to kill myeloma, and has shown great success! Sure, it is not an easy treatment, but it has a real chance of knocking this vicious cancer out once and for all. The problem is that I, like many Myeloma patients, might not get this treatment in time. This is probably the toughest pill I have had to swallow since my diagnosis. To be so close to something that may give me more time with my family, and that sweet little girl, who at eleven, still needs me so very, very much. Like me, many myeloma patients are literally dying to get into this trial. The trial is early with only a few spots open and hundreds of patients on the waiting list. The CAR T Cells take time and bandwidth to manufacture - they are not just a drug that can be given, but are customized for each patient. While the jury is still out on these treatments, the early data is incredibly promising.

My 50th Birthday Party

Will I make it into the trial in time? I may run out of time before I can participate. Will I make it to my 50th birthday this December? Right now I can't be sure. I've decided to plan a birthday party and fundraiser to do what I can to help move research along. I am a patient at MD Anderson, one of the best myeloma academic centers with the largest number of open clinical trials. My doctor, Robert Z. Orlowski, MD, PhD will be the keynote speaker at the party and in case I am not here to attend, he and others will host the event and help continue my effort to further a cure and live positively. My greatest blessing this year would be to have another birthday. If you'd like to join me for this celebration of life and progress, please come to my birthday party and fundraiser!

All ticket and silent auction proceeds will be donated to MD Anderson's Multiple Myeloma research. To donate to MD Anderson's myeloma program, click here.     

The author Jennifer Ahlstrom

about the author
Jennifer Ahlstrom

Myeloma survivor, patient advocate, wife, mom of 6. Believer that patients can help accelerate a cure by weighing in and participating in clinical research. Founder of HealthTree Foundation (formerly Myeloma Crowd). 

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