Got Brain Tumor? Get Back to Work! (Maybe…)

Getting back to work after a brain tumor diagnosis is, well, a bit complicated. So folks can return to work. Others can’t and prefer to focus on rehab. Some want to return, but need a less demanding job.

The Inspire website has a good discussion thread going on all this along with their tips on how to approach your work life after a brain tumor diagnosis: http://www.abta.org/brain-tumor-treatment/brain-tumor-support/returning-to-work.html

Copyright: <a href='http://www.123rf.com/profile_djma'>djma / 123RF Stock Photo</a>

June Rehab F.A.C.T.S. Presentation

I will be making this presentation which I’ve named “Rehab F.A.C.T.S. These are immutable truths I learned during my brain tumor rehab. Actually, they’re pretty common sense ideas on remain positive and tenacious during rehab after some stupid brain tumor or stroke totally messes with your heretofore wonderful life. I give this presentation because I sense that everybody knows that they need to do their rehab, but few actually stick with it. So my presentation is more about developing a positive attitude, self-discipline and trying to make rehab a bit of a game with, shock, maybe even a dash of sardonic humor.

John

 PS -  This is open to all brain tumor/stroke/trauma victims, caregivers, friends and family.

PPS - They usually serve nice snacks, too.

“15 Things I Wish I’d Known About Grief”

If you’re a brain tumor victim, caregiver or friend, you know about grief. That its debilitating, all consuming, mind-numbing and all too hard to shake off easily.

Blogger Teryn O'Brien wrote this list which resonated nicely with my own feelings and I thought others might find it helpful. Here’s her first five:

1. You will feel like the world has ended. I promise, it hasn’t. Life will go on, slowly. A new normal will come, slowly.
2. No matter how bad a day feels, it is only a day.  When you go to sleep crying, you will wake up to a new day.
3. Grief comes in waves. You might be okay one hour, not okay the next. Okay one day, not okay the next day. Okay one month, not okay the next. Learn to go with the flow of what your heart and mind are feeling.
4. It’s okay to cry. Do it often. But it’s okay to laugh, too. Don’t feel guilty for feeling positive emotions even when dealing with loss.
5. Take care of yourself, even if you don’t feel like it. Eat healthily. Work out. Do the things you love. Remember that you are still living

You should know that Teryn describes herself as “…the blogger behind Identity Renewed, which placed #36 out of over 350 blogs nominated in a recent Christian Piatt/Patheos.com vote for top Christian blogs.”

Here’s a link to her “15 Things I Wish I’d Known About Grief”: http://identityrenewed.com/2013/11/21/15-things-i-wish-id-known-about-grief/

John

PS – While I try to keep this blog non-denominational or overtly religious, I felt that almost anybody who is grieving would get something out of this list.

Shameless Self-promotion of Kindle Edition

This is a bit of a fib, because I do feel some shame. Nonetheless the Kindle edition of Chief Complaint, Brain Tumor has just been released by Sunstone Press: http://www.amazon.com/Chief-Complaint-Brain-Tumor-ebook/dp/B00F8OEHAM/ref=sr_1_1?ie=UTF8&qid=1379513677&sr=8-1&keywords=kindle+chief+complaint+brain+tumor

Here’s the highly promotional copy from my Amazon.com website:

“At 57 years old, John Kerastas thought he was the poster child for fifty-year old healthiness: he competed in triathlons, rode in 100 mile biking events and ate a healthy diet chock full of organic vegetables. Then he discovered that he had a brain tumor the size of his wife's fist.

His memoir chronicles the first year he spent addressing tumor-related health issues: preparing for his first operation, discovering a dangerous skull infection, having the infected portion of his skull surgically removed, learning about his substantial vision and cognitive losses, undergoing rehab and radiation treatments, and learning to live with his "new normal." According to Kerastas, the phrase "new normal" is the medical community's code words for "You're alive, so quit bitchin’."

As his health changed, so did his sense of humor. He writes that his humor started out superficially light-hearted prior to the first operation; transmogrified into gallows humor after several subsequent operations; and leveled out as somewhat wry-ish after radiation and rehab. This is a surprisingly upbeat and inspiring book for anybody interested in memoirs about people dealing with personal crises, for patients trudging through rehab, for caretakers helping victims of serious illnesses, or for anybody looking for an unexpected chuckle from an unlikely subject. “

Why do survivors balk at rehab, lifestyle changes?

“25 percent do not change bad health habits after heart attack, stroke” – that’s the headline of a St. Louis Post-Dispatch article by Tara Kulash about a recent study published by the AMA regarding patients’ post-surgery behavior: http://www.stltoday.com/lifestyles/health-med-fit/percent-do-not-change-bad-health-habits-after-heart-attack/article_f30164af-2368-5cf5-8bdc-3f641a7607b8.html

I suspect that most rehab therapists would say that their patients are even worse at doing their rehab assignments.

At first I thought that this makes no sense. What mope[1] would have a stroke (or brain tumor or heart attack) and then ignore all the sound advice they’ve gotten about how to live a longer and healthier life by doing their rehab, or by rethinking that country-fried steak they’re about to shovel down their gullet?

This is rational thinking and, of course, nothing to do with how humans really think or act.

Instead, my thoughts drifted back to UMCOR’s[2] insights on the “four emotional tasks for survivors recovering from a disaster” because I believe that the emotional reaction to having had your house whacked by a hurricane isn’t all that dissimilar to having your brain whacked by a tumor. In both case you feel whacked. According to my UMCOR training the four post-disaster emotional states are:

1. Accept the reality of the situation (I can’t believe it happened).

2. Experience the pain (it’s okay to hurt).

3. Accept that a new situation is required

4. Withdrawing the emotional investment in the past and transferring it to the new.

When I think about these victims in that light, it seems to me that they haven’t accepted the reality of their illness; they haven’t accepted the fact that “a new situation is required”; and they haven’t made an emotional commitment to their new reality. So I now understand why a heart or stroke victim has not yet decided to stop smoking, start eating or to give up eating donuts for the rest of their lives.

Your thoughts?

John

Photo by David Carson, dcarson@post-dispatch.com

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[1] I use “mope” here in the non-denominational/non-gender Midwestern form of the word. Said differently, women can be mopes, too. Truthfully, though, in my experience most mopes are men. This study, to some degree, confirms that suspicion. Of course, you might just infer from this study that more men than women are pig-headed. Even though I am brain-damaged, I think I know enough by now not to take the wrong side of that argument.

[2] These stages are adapted from J. William Worden’s “Four Tasks of Grief Model” as described in the Grief Counseling and Grief Counseling and Grief Therapy: Handbook for the Mental Health Practitioner (Springer Publishing Company, 1991).