Pride in Diversity, Equity, and Inclusion for Cancer Care

Inclusivity is the buzzword of our times right now, and Cervivor is here for it! It’s our hope that the practice of being inclusive doesn’t fizzle out like a trend, and that cancer survivors are included in the inclusivity population.

This hope also rings true when it comes to LGBTQIA issues, rights, and the cancer community. We are bringing this up during Pride Month (Happy Pride!) because many LGBTQIA+ community members who have and have had cancer do not feel welcome or understood in mainstream support groups, and transgender survivors have been specially excluded, according to the Cancer Network.

During a Cancer Network podcast interview, Dr. Don Dizon, who works on ensuring higher levels of gay and transgender participation in clinical cancer trials said, the medical community needs to “[support] people who have felt misaligned in medicine—people who have been the subjects of discrimination. Honestly, you hear the anecdotes of people who are treated unkindly, not to put it mildly.” 

Many of us know the host of feelings that drench our minds the moment we hear a cancer diagnosis. The days, weeks, months, even years after, we are still overcome with scores of emotion including isolation, and feelings of not wanting to belong, are natural and to be expected. However, the actual act of being excluded – even if just a feeling of not being considered – is unacceptable and can be detrimental to our psyche, which, in turn, impacts physical health.

The 2018 LGBTQ Health in Iowa report tells us that scientific evidence has shown that sexual and gender minority individuals are more likely to smoke, be overweight, and have a greater risk of certain cancers. Further, this group is less likely to receive appropriate health care than heterosexual and cisgender peers. We’re not having it!

That’s why we are happy to boast a few organizations and individuals whose missions include providing equitable resources, highlighting the voices of LGBTQIA+ survivors, offering a sense of community, and training caregivers to medical staff on inclusivity and its importance including Cancer Network, Escape, and One Iowa.

Photo Courtesy of Globeathon

“We need to do better for those individuals, so that they’re not delaying access to care [and] that they are participating in our screening programs,” continued Dr. Dizon, who is also director of women’s cancers at the Lifespan Cancer Institute, director of medical oncology at Rhode Island Hospital, and professor of medicine at the Warren Alpert Medical School of Brown University in Providence. 

“At the end of the day, we as oncologists all want to do the right thing. This is part of doing the right thing.”

Three French Hens, Two Cancer Patients and One Love

When my husband Keith and I married on December 30, 2010, we embraced the meaning of the three French hens as Faith, Hope and Love. I knew my life was going to change when we said our ‘I dos’ but exactly how only God held the answers. 

Amy & Keith

I remember when we first met. His smile had me mesmerized as we cut a rug to a 90’s song at a local restaurant turned dance club. His face lit up as we got to know one another. I felt a warmth come over me as he reminded me of home. He was so adorable. I said to myself “I could see myself marring him.”

We both shared our love of faith on our first date. We are both believers in Christ. This is the most important quality in a man to me. We conversed about me becoming a Christian in 2002 and he being raised in a Christian home and we smiled. He shared how he grew up going to church in a small town when he was younger and that attending Sunday service and worshiping our Lord and Savior were two spiritual activities we have in common. He also shared how his big family is so important to him. His older sister loved to cook a big dinner after church on Sundays for his family of five. Our relationship grew on Faith, Hope and Love. 

Eight years after we got married, I was diagnosed with cervical cancer stage 1B2.  I had a hysterectomy, radiation and chemotherapy. I felt defeated. I was fatigued all the time, especially after my first round of chemotherapy. Keith was right there by my side encouraging me and praying for me everyday. He was my hope and not only that he became my caregiver. During this time, he would take me to my oncology appointments which were 30 minutes away from home. I felt so grateful and safe. I really never understood when people spoke about “their person” or my “ride or die”. Well, now I do. I don’t know what I would have done without him. 

The following year, we received some more heartbreaking news. Keith was diagnosed with multiple myeloma.

We nervously waited in the emergency exam room. The doctor came in and said, “Mr. Knox it looks like you have some cancerous lesions.” We were both in shock. I seriously couldn’t believe we were going down this road again. I exhaled.

Then Keith’s journey began in October 2018 when he went through a long and difficult stem cell transplant. This is a procedure in which a patient receives healthy stem cells to replace their own. He was in the hospital for 27 days. He was very weak, had no strength and lost 32 pounds. He was given a large dose of chemotherapy which made his hair fall out. I was at the hospital by his side day and night, giving him hope by praying for him and helping him with his basic needs like walking, getting dressed and eating. I will be honest, some days were really hard. There were long nights and days where my husband wouldn’t eat, wouldn’t walk and somedays he felt like giving up. 

Then God stepped in. The Physicians Assistant, Ami, who is part of the oncology team asked Keith if he wanted to go home today. He answered with a yes and we were beyond happy!

Survivor & Cervivor

Today I continue as his caregiver, assisting with his medication and chemotherapy daily. He also has neuropathy in his feet and legs. Neuropathy is weakness or numbness and pain from nerve damage. I rub his feet with pain reliving creams. Some days are better than others. But every day is a gift that I am with him. 

As a patient and caregiver I too have days where I need help. My husband helps me when I don’t feel like cooking. If I need help with doing laundry or vacuuming the house, he is the first person to say, “I got you babe” and I am the first to say, “Thank you and I love you.” This relationship has taught me it’s ok to ask for help and I try not to put pressure on myself to get everything done. It’s okay to have a day where all you do is rest or read a book. There are days both of us don’t feel like doing a dang thing. What I have learned is to be in tune to or with your partner whether it be for better or for worse!  

Amy is a wife and patient advocate based in North Carolina, who was diagnosed with cervical cancer at age 44. She is passionate about reminding women to get screened for cervical cancer. She supports Cervivor and its mission in many ways, including being a social media influencer for the organization, as well using her faith to serve as a praying partner for those seeking that level of support. Learn more about Amy by reading her Cervivor story here.