Love --and Bonk!--in the Time of Cancer

This blog began because of sex. Sexual frustration actually. No, not with my partner but my absolute frustration with the medical community—oncology specifically, re: Sex.

When John’s cancer treatment began no one would talk to us about sex. They talked about drugs, food, even made recommendations for footwear, but no sex talk. I tried: I asked, I joked, I tried euphemism, and I tried being very direct. Nope, no sex talky.  All the caregiver literature used the “C” word though. Cuddle. Ugh. It was just so insulting, discouraging and frustrating.

So, I did what I always do when something really makes me mad: I started writing. At first I vented, then I educated. I got all the answers that no one would give me, and I shared them and then I kept writing.

This blog has become about cancer and couples, and relationships, and caregiving, and resources and research, and advocacy. But today it is—again—about sex. And some research and a resource that I think will make you say, “Wowsa!” and will make you laugh.

Over the last few years I have been writing my new book, “Never Leave Your Dead,” about military trauma so I have been reading everything about veterans. That led me to the amazing science writer, Mary Roach. I loved her new book "Grunt" about what happens to bodies in battle, But then I also found Roach’s older book, “Bonk: the Curious Coupling of Science and Sex."

So I started reading and I started laughing, and I started saying “Holy Crap!” so often I woke John up several times. In “Bonk!” Roach takes us through the stories of sexual research—not just the conclusions (clitoral versus vaginal orgasms; penis size; what impotence really is…) but also through exactly how that research is conducted.

I can truly promise that you will learn more about sex that you ever wanted to know—and you’ll learn some really good stuff too. 

And you will laugh.  Roach is a hysterically funny writer. Even when she is dead serious—like when she is writing about penises and corpses—her commentary and asides will make you choke.

And laughter after all, you know, is the very best medicine.

*****

(And yes, my new book is, "Never Leave Your Dead" published by Central Recovery Press.)

Greatest Toll is on Cancer Caregivers

An important article by Claire Hughes in today's Albany Times Union. Hughes reports on the recently released study, "Cancer Caregiving in the U.S."--a report from the National Alliance for Caregiving, a Maryland-based nonprofit.

The study, and Hughes article which shares personal stories, details the kinds of hands-on care and specific stressors that caregivers of a loved-one with cancer face.

I know that you already know this. You have had this experience or you are living it. But, I think, it does help to know that what you are experiencing is real, and documented, and that the stress and struggle of cancer care are not a failing, weakness, or personal.

This is an article to share with loved ones, friends, support groups and counselors--and oncologists.

Here is the link to Clair Hughes article in today's Albany Times Union:
http://www.timesunion.com/tuplus-local/article/Report-cancer-caregivers-offer-help-for-shorter-8312334.php

The Twelve Steps Help Caregivers Too

I was in a Twelve Step meeting yesterday and as I listened to how people apply the practice of the 12 steps to many parts of their lives like with their work, eating, kids, in-laws, money etc. I started thinking about how we can also apply the Twelve Steps to cancer and

caregiving.

If you’ve not been exposed to the original Twelve Steps that derive from Alcoholics Anonymous you can click on this link: 

http://www.12step.org/the-12-steps/

I believe these steps of recovery can be applied to caring for someone with cancer.  As a long-time caregiver here is my interpretation:

1. We admitted we were powerless…powerless over Cancer, over illness, over some doctors. And note that it says “we”…have to let that “we” into caregiving. I know how hard that is.

2. Came to believe…yes we need to believe in something bigger than us and bigger than cancer. Maybe it’s God or a Higher Power or maybe its Grace or Nature or the Ocean…just bigger than me. (just don’t make the doctor your Higher Power ☺)

3. Made a decision to turn it over…humility here..asking for help and surrender. Not giving up but surrendering that allows the universe to move and help us.

4. Made a searching and fearless inventory…what of my stuff is getting in the way? My resentment? Being a control freak? Anger I am ashamed to admit to? Don’t be afraid to name it.

5. Admitted to God, to ourselves and to another human being….this is the Support Group step. If you have felt it, said it or done it someone else has too. Reaching out to others, finding a safe place to say all of it.

6. Entirely ready to have …asking for spiritual help too. A pastor, chaplain, spiritual director, wise friend. Note: not a family member.

7. Humbly asked…again, the support group. “I don’t know what to do?” “I don’t think I can keep doing this.” “Has anyone ever had to…”

8. Willing to make amends…yes you will snap at people, gossip, bring up old crap, be mean to the person you care for, …comes with the territory. So does, “I’m sorry.” And “Bear with me.”

9. Made amends…Ditto

10. Continued to take personal inventory…in a safe place with safe people. Yes, again the support group. You don’t have time to NOT go to a support group.

11. Prayer and Meditation…yes, prayer and meditation. Every day. Even a little bit. “Please help me.” in the morning and “Thanks for getting us thru this day” at night.

12. Carry this message…even while you are in the worst of it you can help another caregiver. You can confirm their reality. You do this in waiting rooms, ICU centers and yes, in your support group.

Do these Twelve Steps click for you? Let’s keep this conversation going.

Fight Cancer or Cure It?

As in every other field, and every other endeavor, language matters. Words have power.
The rhetoric around cancer can encourage or defeat, and it can persuade and raise money or it can dash hopes.

Last week a provocative op-ed in the New York Times, titled: "We Won't Cure Cancer" provoked a lot of discussion, some anguish, and a tiny bit of relief. The writer, Jarle Breivik, is a professor of medicine at the University of Oslo in Norway.

Maybe, like me, when you see those words: "we won't cure cancer" you think, "OK, so what are we going to do about it?" And helpfully, Brevik, tells us that we are getting better with cancer and better at treating cancer, and lifespans have extended, but he explains, one of our complications is that we live longer, and cancer does correlate to aging, so the longer we live the better our chances of, yes, dying of cancer.

But the centerpiece to his provocatively titled article is that we have to get better at thinking about what "cure" means, and how to read the research proposals and which promises to cling to.

It's a conversation that matters.

So here is the link to the article in the New York Times. Read and share and yes, keep thinking:

http://nyti.ms/25lMOGo