One year ago, I was graduating from college and celebrating with a mentor I had been paired with through my scholarship program. Together, Sarah and I looked back on 4 years of growth and challenges and turned forward towards new adventures.
I had not seen Sarah for a while, but as we caught up, she told me some stories about her life that past year. What she told me then and throughout the process of writing this blog was consistent with how I had come to think of Sarah: a kind, warm, and giving light in the lives of all she comes into contact with.
After her diagnosis with multiple myeloma, Sarah had experienced many challenges, learning, pain, support, and love. Now, she is giving back to her community by leveraging her experience and knowledge to help others who are experiencing or may experience similar challenges in the future. It became clear from my work with Sarah this year that her experience with long term care services was similar to what we are hearing from other consumers in Colorado. Long-term care enables us to live our entire lives to the fullest, and coordinated, integrated care is crucial for our health and well-being. Yet, these incredibly important services remain often inaccessible and unaffordable for many in our state.
Sarah’s experience also illuminated how having access to long term care allowed her to leverage her resources and contribute to her community. Stories like Sarah’s show the power of implementing policies to make equitable, affordable access to long-term care services a reality. When we assure each member of our society can access the resources they need to thrive, we invest in the power of our communities to create change.
I hope Sarah’s story inspires you, as it did for me, to work boldy for long term care justice in your communities.
I never expected cancer, or what it would do to me, or how I would respond, or how my life would change. Now, nearly two years since my diagnosis, I feel only gratitude.
In March 2017, an avalanche of worse-than-bad news hit me. My job of 34 years was eliminated. My ongoing anemia led me to an oncologist who diagnosed multiple myeloma, an incurable blood cancer. Treatment would be difficult and the prognosis bleak because I lacked a chromosome that suppresses tumors. Even with the help of medical professionals and the incredible support of friends and family, I was overwhelmed.
Even before treatment could begin, the cancer had weakened my bones so severely that a vertebra collapsed, leaving me hospitalized. When treatment eventually started, the standard chemotherapy was dreadful. Just one of the prescribed four rounds of treatment was more than I could bear, as the side effects seemed worse than death. With treatment unlikely to extend my life and certainly destroying its quality, I opted to enjoy the brief time left. Hospice care was my best option, as hospice care doesn’t include being actively treated for anything outside of pain management. Thankfully we have insurance that covered hospice and palliative services. But, our experience with insurance can be incredibly frustrating at times. For example, my former employer changed benefits managers and the hand-off was not seamless. Providers were being told that I no longer had coverage, even though I did, which slowed down treatment. The problem was resolved, but it was scary to think of being without insurance.
I entered home hospice in June 2017, and thus started what I expected to be my not-so-long goodbye. The hospice team cared for me, managed my bone pain, and became close friends.They were available 24/7, and I had a nurse come weekly, access to a therapist, as well as a Certified Nurse Assistant who came twice a week. They handled my pain management, and helped me with showers and leg massages. I called their care team my “spa team.”
My community also provided care for me. My friends and family from back east came to visit. My sorority alumnae group brought a margarita party to my home and sang to me. They and other friends delivered wonderful meals. A college friend created a slideshow of my life that we planned to show at my life celebration party after I died. I drafted my obituary. Friends from a women’s group brought me lotions, soft throws, socks, books, a lavender sleep mask, puzzles, and candy. I was so lucky to have close family and friends to visit, help, and provide long-distance support so that my husband could have a break from providing 24/7 care.
Combined with my hospice care, unpaid care from my friends and family helped me manage.
We’d always try and get a break for Michael, my husband, to golf once a week, as he stopped working to take care of me full time. It’s great to have live-in help, but caregivers also need to take care of themselves. Caregiving for family members can involve learning new skills and taking on new responsibilities, like learning how to help a family member get to the bathroom and shower, or shifting domestic duties, among many other challenges. Organizations like Pikes Peak Hospice and Palliative Care and the Leukemia and Lymphoma Society provide great information and extensive resources, including family caregiver training and supports for long-term care.
So my summer of indulgence involved eating treats and enjoying the company of friends. What could be sweeter?
I especially indulged in a chocolate soft-serve ice cream cone dipped in chocolate from Tasty Freeze on North Weber Street near the Rocky Mountain Cancer Center in Colorado Springs. That treat was always on our tour when visitors arrived. I gained 10 pounds. The support of my sorority during my illness and its support of the Tactile Gallery at the Fine Arts Center at Colorado College inspired my husband and me to imagine memorializing this symbol in a piece for the gallery. We commissioned local artist Sean O’Meallie to capture my hand holding that Tasty Freeze cone, which was unveiled in the Fine Arts Center last September.
Summer ended and we approached the holidays. I was still here.
My oncologist was surprised to see me; he’d only given me 6 months, and that time was nearly up. It seems I had responded well to my brief, 3-week treatment 5 months earlier. Optimistically, I agreed to restart treatment, but the reality of the side effects returned intensely again. I returned to hospice, but now wanted the remaining days to be purposeful, and less indulgent.
What could I contribute, especially to those facing the same avalanche I had when I was first diagnosed? Then, no support group was available for blood cancer patients like me. I thought, how could a city of a half million people lack support for patients and their caregivers? Traveling to Denver for such service is inconvenient at best and probably unmanageable for most patients. So, I decided to try and start a support group for blood cancer patients.
Through weekly calls beginning in April 2018, my contact at the Multiple Myeloma Research Foundation (MMRF) —now a dear friend—helped me through my quest to create a support group. My local friends with an interest in blood cancer—either as patients or with family members who were afflicted—helped me launch a support group for blood cancer awareness in Colorado Springs. The Rocky Mountain Chapter of the Leukemia & Lymphoma Society (LLS) chose to sponsor us and trained some of us as sanctioned volunteers. The LLS sponsored a Blood Cancer Awareness dinner at Till Restaurant in October, and 95 blood cancer patients, caregivers, and healthcare professionals attended. In November, our first support group meeting attracted 25 people. The LLS helped find a qualified facilitator and now publicizes our meetings via email and flyers at the blood cancer treatment centers in Colorado Springs. The group meets every fourth Thursday of the month at 6:00 p.m. at Library 21C, and is open to any blood cancer patient or caregiver.
I wanted to share with others how to be prepared for anything and how to be your own best advocate. For example, instead of assuming that “someone” is taking care of you, have a primary care doctor or friend/relative to manage your overall care, and always see a specialist in your type of cancer. Your healthcare providers are marvelous, but they aren’t specialists in all fields. I couldn’t believe how many specialists I’ve been referred to.
Starting a support group and commissioning a piece to the Tactile Gallery of the Fine Arts Center constantly energized me. Since I was now unemployed and disabled, these projects kept me involved in something and with people. On days when I was feeling good and engaged in something, I’d forget I was sick. Everyone needs a purpose. Work and family had always defined me, but I no longer have kids at home and my job was gone. These projects continue to give me reasons to live. And the Spring weather helps too!
Throughout those months working on the blood cancer awareness group, I still regularly indulged in that ice cream treat. It came to symbolize the sweetness of life for me.
Meanwhile, I continued to receive care and encouragement from hospice. When six months had passed since my last treatment, my friend at MMRF encouraged me to contact a multiple myeloma specialist in Denver. He prescribed a targeted treatment that I began in August of 2018. This treatment costs $480,000 per year, not including the other costs incurred for visits to the gastroenterologist, pain specialist, psychologist, and dietitian. With extended insurance coverage through COBRA that has a premium of $1,500 a month and a $4,500 deductible, my treatment is extremely expensive and results in high out-of-pocket costs.
That being said, this treatment has had tolerable side effects, and I have been improving. After nine months, my blood count numbers are all within normal range! Although I am dealing with some broken bones, and still struggle with back and rib pain, I have the energy to try and start rebuilding my atrophied muscles. My cancer could return at any time, but I intend to continue enjoying that ice cream. And I encourage you to indulge a bit in your sweetness of life, whatever that may be!