By Jennifer Gillette, LMSW
I had the pleasure of chatting with Christine one afternoon after she reached out to us sharing a picture of her sister (BMT donor), daughter and herself sporting their GVHD awareness bracelets with pride. I was intrigued and wanted to learn more about her story as Christine shared that she was a 17-year survivor post-transplant. I am so glad we talked further as I know anyone on this journey would be inspired by her.
At the age of 57, Christine started experiencing a “sinus infection” that would not go away. Her doctor kept writing her scripts for antibiotics but the face pain grew worse. It became so debilitating that after seven months her husband literally had to carry her into the emergency room. She learned that day that she needed to learn to assert herself and even be slightly aggressive. Christine shares that it is important as a woman patient to understand how to be heard as your symptoms were being minimized. In fact, that day Christine advocated for an MRI and blood work, which led to a myelodysplasia diagnosis. After a course of chemo, she went for a bone marrow transplant where her sister was her donor. Christine was a star patient and left the hospital 13 days after transplant which was a record back then.
After returning home, within a month, Christine’s husband and caregiver left her. It was up to her to figure out her recovery and to adjust to the changes in her body alone. She learned during this time the importance of having her village, especially her daughters. They stood by her as she began experiencing the challenging effects of her transplant. Christine developed a fungus in her throat and mainly consumed watered down cream of wheat for a year. She was living on social security alone. Soon Christine began developing GVHD in her skin, fascia, and eyes. Her skin developed black bands and it was hard to make the skin flex, for example, when she tried to put her hands together–they would not touch the way they used to. Her skin was treated with a variety of lotions from her provider and Christine found her eyes to be the most challenging. The GVHD felt like stabbing in her eye. Her doctor tried moist eye pads and tear duct plugs but neither really did much. One day she stumbled upon someone who had success with autologous tears, drops made from your own blood. They took 15 tubes of blood from her arm to make the drops. She had to return every three months to make more, and Medicare didn’t pay for them– $160 every three months at that time. The good news is the first time she tried the drops, she experienced relief. She was on them for nine years, every two hours, until she was able to wean off them. The skin issues only lasted a few years. During this times, Christine started a support group in central Oregon as well as she saw the need for support and communication. Her hospital support group did not last or keep good numbers as she said it was not very welcoming. There were many rules and it lacked the warmth needed to help people feel open to share. She started a group that felt like a “sisterhood”. “We eat with each other, we talk with each other, and many have come here for years”. “This group saved my life as we understand more what it is like to walk in each other’s shoes, we also run it like a party”.
In 2020, Christine began experiencing a weird rash that would not clear. It eventually spread to the rest of her body. It was later discovered that she had lymphoma. In 2022, she discovered lumps on her neck, and she was found to have follicular lymphoma. She also discovered a red plastic like button in her mouth that medical personal misdiagnosed. This eventually became known as squamous cell carcinoma. She has had surgery, started chemo again and will need radiation. However, in her newest battle, she took the time and energy to talk to us to share what she has learned after being a four -time cancer survivor and GVHD survivor.
- • Take each day as it comes.
- • Allow yourself to make situations smoother. If you need a sedative for a procedure, allow yourself to receive it.
- • Make your village and allow others to be supportive.
- • We need angels. Her five month-old granddaughter gave her the inspiration to keep pushing forward and to smile. Look for your inspiration.
- • Adopt a healthy diet, it can make a world of difference. She has lemon water and a green smoothy every morning. She also implements clean eating.
- • Christine became a Reiki practitioner.
- • Christine found photopheresis to be an important tool in fighting her GVHD.
- • Don’t wait to go to the doctor with side effects. Don’t say its “only a…”
- • She found strength in the book “Radical Remission.” It has stories of those close to death that made radical recoveries.
- • Christine loves to travel and makes plans for the future.
- • Christine says she makes things work out and does them her own way.
- • Christine emphasizes exercising even in the hospital. Get out of that bed!
- • Learn to assert yourself and if needed, be a little aggressive. Your well being is worth it!
Thanks, Christine, for sharing your wisdom! Thoughts and prayers for health and wellness for you!
