Kathy’s Cancer taught her how to be an advocate
Diseases
Cancer
Issues and Challenges
Kathy has encountered: Access to Expert Providers, Access to Medicine, Copay Issues, Medicare / Medicaid Issues, Financial Assistance
My Story
I had no idea that what seemed like a simple backache could lead to a surprised cancer diagnosis, but here I am.
While getting out of the hot tub one Friday night, I felt something pop in my lower back. I managed to limp into the house, thinking it was probably a simple strain and proceeded to go to bed. The next morning, the pain was worse so I opted to visit a local urgent care clinic in the rural area where I live.
I had a great deal of difficulty even walking into the clinic. It was painful to walk, sit, or stand. I was seen quickly , given a cursory exam which consisted of asking a lot of questions and then I was prescribed a muscle relaxer and a pain pill. "You just strained your back" they told me. i dutifully filled the prescriptions but after a week or so, it was evident that it was not improving.
I opted to visit an osteopathic doctor who basically told me just to be patient. Healing would take time. I sought out chiropractic care. I was x-rayed, told that my hips were out of line and prescribed a series of adjustments. Having had successful chiropractic care previously, I was concerned that I didn't feel the immediate relief I was used to after my treatments.
While undergoing this series of adjustments, I still tried hard to continue with my active lifestyle. I'm heavily involved in local community theatre and had just landed a dream bucket list role. I continue to attend rehearsals, limping my way through as best I could, hoping that things would improve by show week.
One Friday night, I went out to have dinner and see a local theatre production with some friends. I was hoping it would take my mind off of my situation, even for a few hours. However, when the show was over I found myself suddenly unable to walk. My friends managed to help me to my car and I was able to drive the thirty minutes home. I pulled into the attached garage thinking "now what?" I managed to drop down onto my hands and knees and crawl from the garage into the house and down the hall to the bedroom. My husband scolded me and told me that I had overdone it. I gratefully crawled into bed, hoping that it would be better in the morning.
It wasn't. I awoke, had to crawl to the bathroom and struggle to lift myself up to use the toilet. At that point, I asked my husband to take me to the emergency room. I was whisked in via wheelchair and seen quickly. They started an IV with pain medication and ordered an MRI.
After waiting some time for the results, the emergency room doctor burst into the room, indicated my husband and started shouting at me, "Who's this?" Groggy from the pain meds, I asked him for clarification. He shouted again, "Do't look at me like I have two heads. I have to ask!" When I told him it was my spouse, he abruptly announced, "You have cancer. You have an appointment with an oncologist on Tuesday." and walked out.
My eyes filled with tears. Cancer? From a backache? I had to call the director of my show and drop out. I was not sure what the future held for me and the show was just a few short weeks from opening. That was heartbreaking to me.
I went to the appointment a few days later. I was given a local anesthetic and had a bone marrow biopsy. They said they would also get enough material to send slides to Mayo for additional testing.
In the meantime, I visited my primary care doctor. He was very concerned and ordered a follow-up MRI. I got the results in my patient portal before I even got home. It indicated a destructive lytic lesion in my left lower sacrum.
My PCP also suggested that I call the oncologist and ask about the results. I thought that was odd because they were in the same building, one floor apart, but I did as I was asked. I was shocked at what I was told. "We didn't get enough sample to do the slides." WHAT? This oncologist had been practicing for probably forty years and didn't get enough sample?
I knew at that point, after my emergency room experience and now this, that I was not going to get anywhere with rural healthcare. My sister got on the phone and found me an oncologist willing to see me at Northwestern Medicine, approximately two hours away.
I first had a telehealth visit and after answering all of his questions, he asked me "What are you doing today?" I smiled and said, "I assume I'm coming there for tests." I was in the car and on my way shortly after. After a battery of tests that day, another bone marrow biopsy, PET scans, a guided biopsy of the lesion itself and more, I was finally diagnosed with multiple myeloma three months after my first backache getting out of the hot tub.
As much of a surprise as it was, I at least had answers and could plan a path for treatment.
I started induction treatment the following month. I tolerated it well and was feeling almost back to my old self. I auditioned for another theatre production and was cast in the lead. My healthcare team was very supportive and allowed me to have the week of the show off from treatment. They are committed to treating me as a person, and not just a disease. I am so grateful that despite the drive, I have been able to access the care that I need. And since then, I've been able to be in three theatre productions, as well as get back to traveling - most recently to New York City to enjoy seeing shows on Broadway to celebrate my birthday.
I learned that multiple myeloma is not curable, but very treatable. In the eighteen months since my diagnosis, I have learned a great deal about this disease. I log on to as many webinars as possible through the Healthtree Foundation, The International Myeloma Foundation and the Multiple Myeloma Research Foundation. I joined a support group and have attend two patient and family seminars in person.
I continue to do well, and am able to make decisions with my healthcare team about the types of treatment I want, as well as what I don't.
My Motivation and Inspiration
I want others to know that the word "cancer", while scary isn't necessarily a death sentence. I am inspired by others who have walked this path before, and I hope that by sharing my story I can help others through what may seem like a dark time for them.
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