CancerLand Bookshelf: Chief Complaint: Brain Tumor

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Alysa Cummings

Alysa Cummings

Author: John Kerastas
Publisher: Sunstone Press, 2012 | $16.95 US
Information: ISBN: 9780865349087
OncoLink Rating: 3 Stars

At first glance, John Kerastas and I couldn’t be more different from one another.

For starters, he’s a guy recovering from recent treatment for a brain tumor and I’m a 15 year breast cancer survivor. Then there’s the issue of geography; John lives in the Midwest with his wife and family, and I am forever and always a native of the northeast. But the more I think about it, maybe we do have some things in common.

After all, John and I are both first time authors. During 2012 we each wrote books based on our experiences as patients. Clearly, we’ve both discovered the value of writing as a tool to heal from the trauma that often goes along with treatment for a serious health condition.

Now, after reading John’s wonderful memoir, Chief Complaint: Brain Tumor and reflecting a bit more, I realize what else we share – zero tolerance for intense pain delivered without warning at the hands of clinicians in the healthcare delivery system. The following excerpt explains what happens in the hospital after a doctor at John’s bedside removes a shunt post-op:

She then needed to close the wound. I think I said, “So you’re going to give me a couple of stitches, huh?” I was used to stitches. I had stitches all over my head. I knew what to expect from stitches.

Yes, it’s time for another pop quiz. Pick one:

A.She effectively gave me a face lift by pulling so hard on my stitches.

B.She used super glue instead of stitches to bind my wound.

C.She used Elmer’s glue which is almost as good and a lot cheaper.

D.She stapled my head.

Yes, she picked “D.” She stapled my head. She may have said something like, “the doctor prefers staples.” I thought, “Staples? Surely you’ve got to be joking.” She wasn’t joking; she wasn’t Shirley; and she quickly shot a staple into my head, BAM.

That hurt. That hurt more than any other medical procedure for which I was awake. Now based on my standing in the Professional Patients of America, this broke one of the most sacred rules in the patient-medical profession code of engagement; early warning of incoming pain. I thought all medical professionals, no matter how well-coiffed, were honor-bound to warn you when something was going to hurt. That way you could ask for a shot of whiskey, gird-your-loins or do some pre-emptive sniveling.

I tried to look at her but she deftly hid behind me. And then without any warning, BAM, she stapled me again…

Last but not least, John and I both use humor to cope, as in, “when-the-going-gets-tough, crack-a-bad-joke.” This may have something to do with my immediate decision to look up John Kerastas online and email him a few questions. He graciously responded, which is how I can now share our “virtual interview” with all of you.

A Virtual Interview with John Kerastas

Alysa: There are so many vivid details in your book that I have to ask you, John, did you start keeping a journal after you were diagnosed with a grade 1 meningioma brain tumor? If not, what was your process to create your memoir?

John Kerastas

John: I started with an email to myself when I was in the hospital for the second time. I wanted to write about my worst day in the hospital, the day when I could feel myself on the very edge of being sucked into a vortex of self-pity that would have been very hard to escape. So I wrote myself an email about what happened and why I was feeling so bad. Writing the note helped get some of the emotional pain out of my head and onto paper. Later, I started writing to capture the emotional, physical and mental peaks and valleys because they seemed so strange and challenging and draining.

Alysa: How has writing a book about your brain tumor experiences (including an 11 day hospitalization, two surgeries, a serious brain infection, radiation as well as cognitive and physical rehabilitation) helped you heal?

John: For me, writing was therapy. It gave me a chance to get some emotional distance from my obvious handicaps. Perhaps more importantly, it gave me a way to categorize those frightening memories as weird, crazy and darkly humorous. Doing so kept me (relatively) sane.

Alysa: No one goes through something like this without experiencing changes of all kinds – physical, emotional and spiritual. Please share some details about your “new normal” now that you are in year three of your recovery from a brain tumor.

John: Physically, I am still partially blind and try to work on my cognitive skills 3 to 4 times a week. I also think I am much more grateful for the abilities I do have. More importantly, I spend 50% of my time “giving back.” I’ve become a certified “Early Response Team” trainer and helped with clean-up after Hurricanes Isaac and Sandy. I work in a soup kitchen and hand out food to families who aren’t sure where their next meal is coming from. I also go on service trips to assist folks recovering from other kinds of disasters through the Appalachia Service Project and the Epworth Foundation.

Alysa: In your book there are jokes and comic asides and double-entendres, a handful of pop quizzes and even a few song parodies. How did being such a comedian help you cope with your diagnosis and treatment? Or were you always a wisecracking sort of guy, even before a brain tumor became part of your life?

John: While I have always been guilty of bad jokes and cynical observations, my brain tumor-driven fears just ratcheted up all my sarcastic and sardonic comments about ten notches. Said differently, those jokes were my thinly disguised way of trying to dive back into the nirvana of unmitigated DENIAL – denying that I was handicapped, denying that I might not recover, and denying that every bump in the road was scaring the — out of me.

Alysa: Knowing what you know now as a veteran brain tumor survivor, what advice would you share with a newbie who has just been diagnosed?

John: I would quote Jim Valvano who famously said “Don’t give up. Don’t ever give up.” This is especially true after your operation and latest chemo/radiation treatments. I always tell other patients to stop looking in the rear view mirror (i.e. pining for what you used to be) and focus instead on being 100% committed to your rehab program.

Alysa: Near the end of Chief Complaint: Brain Tumor, you participate in a 5K run sponsored by the American Brain Tumor Association and describe the joy of “finding your peeps.” What are some of the benefits of associating with fellow survivors? Now that you have completed treatment, are there other ways you are affiliating with brain tumor survivors and giving back?

John: I make presentations about staying tenacious during rehab after diagnosis with a brain tumor or brain cancer. I’ve also spoken with stroke support groups. Along the way, I’ve presented to an audience of only one person, and I’ve presented to dozens at the American Brain Tumor Association’s annual “Friends and Family” meeting. I find those presentations hugely rewarding.

Alysa: Thanks so much for being part of a virtual interview for Oncolink, John.