If I were Cancer I wouldn’t want to meet Elaine Schock in a dark alley. Or in any alley at all. She’s a fierce and formidable opponent. And not just because she boxes.
When her husband, writer and music journalist Mikal Gilmore, was diagnosed with HPV-related cancer in 20 she took it upon herself to learn as much as she could about the disease. He thought he was going to die, she was determined he wouldn’t. She became his tireless advocate and despite a demanding travel and work schedule (she’s a music publicist with a big career), his fiercest supporter. I know many people who define the caregiver role as being with their loved one 24/7. Elaine couldn’t do that. Her approach was singular. But then, so is her marriage.
Mikal had a large following on Facebook, and Elaine began to post about his journey and hers each Saturday. Her posts were raw, honest and informational. Both their followings grew and became a community that not only wished Mikal well, but appreciated Elaine’s laser-focused support and even shared some of their own personal experiences with cancer. Most of us looked forward to each Saturday post. And still do. It’s still a community of caring, loving people that spontaneously developed around this couple’s battle.
Mikal is cancer-free now and Elaine’s Saturday posts have become less about HPV and more about politics. His community is still following along, participating, looking forward. That’s the background. I’ll give you more at the end. But here’s 5 Questions with Elaine Schock:
1. Mikal’s diagnosis came out of the blue. What was your initial response to it and did that change over time?
Mikal’s tumor was growing rapidly and although he had been misdiagnosed for eight months, I knew in my heart that something was horribly wrong. I left for Nashville for few days and when Mikal picked me up at the airport the growth on his neck had become alarmingly large and disfiguring. I was scared. He made an appointment with a specialist who knew on the spot he had cancer and what kind it was. I had never really heard of HPV-related cancer before except in Michael Douglas’ case and I didn’t pay too much attention to his claims he got cancer from oral sex. How stupid and small-minded of me. Mikal had a biopsy to confirm. I left for Farm Aid the day after his diagnosis. I didn’t tell a soul. And, these were my close friends. It was on the plane that I bought my first book on cancer called “The Emperor Of All Maladies.” I didn’t tell anyone until Mikal started treatment. Mikal then wrote his post on October 13,2015 informing everyone. We did not know what to expect.
My response never changed: we need to get Mikal well. It was shocking that it was a Stage IV because I knew what that meant but with HPV-related tongue and throat cancer that is not necessarily a death sentence. The Oncologist told me the survival rates were better for that type of oral cancer but the treatment is the same as if you were a smoker. Smoking will kill you. Who knew that sex could as well? There needs to be more research done on treatment because not all oral cancers are equal and there is currently no HPV test available for men — only women.
2. Your job requires you to travel so you could’t be with Mikal every minute of his treatment. How did you balance the requirements of your career with your need to support him? What practical advice could you give other loved ones having to do the same balancing act and maybe feeling guilty? –
To be honest, I never really felt guilty. We live with my children who helped and my sister and her husband were less than a mile away. I had a lot of support and Mikal took good care of himself. He drove to the hospital which is very close by. I could read up on his cancer and treatment and make good choices for him while I was on the road. I was home for every important Oncology appointment. I think the best advice I can give is to contact The American Cancer Society. They have nurses who can answer any question and are available 24/7. Bad things seem to happen at night too. They sent me books and offered advice about Yoga, diet and support groups. As it turned out, we didn’t use any of their suggestions but it was good to have that information.
You have to face this straight. on. That takes courage. I think the most beneficial thing for Mikal was going on a daily basis to get hydration therapy. It is a given intravenously for a number of hours a day. Chemo just dehydrates the body and this therapy not only stops that but flushes out the chemo faster. You feel better. I made sure Mikal received the treatment daily even though it was a fight. I always won. Some people are made for battle and some have to summon that up. I was lucky fighting is in my nature. Hydration Centers do understand a stage IV patient gets aggressive Chemo and try to help. Talk to the nurses. They know what happens to your body after you get chemo. Fight for the most expensive anti-nausea drug when you get chemo. it is given intravenously at the same time. You can’t have what you don’t know exists. Educate yourself
My career never suffered. I thought it would at first because I figured people would think I was too busy being a care-giver to do the job but I never missed a day’s work and it was my escape. Plus, cancer is expensive, we needed the money. People lose their homes. It is a side effect rarely discussed.
Don’t believe people who give you bullshit remedies like Turmeric or Lemon cures. They mean well but you will die. I know lots of people who went for alternative therapy. I don’t know any who survived. Go to an Oncologist you trust. Go to two, but never get your treatment from the internet.
3. What did YOU need as caregiver that maybe you didn’t get or maybe you did and it made the difference?
It took months and months to believe I was actually a care-giver. I mean I still led the same kind of life except I didn’t. I actually got what I needed from the Facebook posts/blog I started when Mikal became ill. People who contributed had cancer or experienced it from loving someone who had the disease. There was no stigma and advice was shared freely in a gentle atmosphere. People who didn’t know me, cared. Too many are isolated and afraid. That changed with my posts. I never miss a week. A number of people who shared their stories did not survive. That was the hardest part. We are a community. it is touch to lose a member but so many more are in remission.
4. What do you think made the biggest difference to Mikal in his treatment and recovery?
Neupogen is a drug that makes white blood cells after cancer treatment. Mikal was in the hospital daily so he was getting checked regularly for his blood count. This drug has changed everything. One of his nurses said, she almost gave up practicing because chemo was so lethal and she lost too many of her patients until this drug was discovered. Initially it was a breakthrough for AIDs patients and someone figured out it could help chemo patients as well. Huge.
5. You’ve made it your mission to educate the public, your followers on the disease. Why is it so important for this particular disease?
If you could save a life, wouldn’t you? If my writing saves one person, then my own life is worth far more.
Thanks, Elaine. Note to readers: I encountered Mikal first in the mid 1990s, through his award-winning memoir, Shot in the Heart. It was riveting and I thought he was the best writer I’d read in years. He’s still right up there, although his work is most often seen now in Rolling Stone magazine, where he’s a constant contributor. I love his book of essays, Stories Done: Writings on the 1960s and its Discontents. If you know me, you know how the 60s resonate for me and his book brings it back.
Elaine and Mikal have turned her Saturday Facebook posts into a memoir called Stay With Me, due out in November. Keep an eye out for it and of course, I’ll write about it here after I’ve read it. Yes, I’ll read it, even though I followed the posts in real time–they were that powerful. I can think of several people on my list who will receive it for the holidays.
5 Questions is a new every-so-often feature here at A Healing Spirit. I’ll ask them of people who have something significant to say about illness, treatment, grief, caregiving, health and healing. Elaine is the first and I thank her. She won’t be the last.
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