Tuesday, July 19, 2016

I Remember Waiting

John’s surgery day. I’m at St. Peters Hospital in the waiting room. I watch the other waiters—family members, loved ones of patients. Some are young parents and their little ones are in surgery, some I think wait for an older patient—adult children are the waiters, some, like me, are spouses. 

I get my coffee and read my new Louise Penny book. Inspector Armand Gamache is such
good company here.  Wise and calming.

I am aware of the routine of this room. The docs come out to chat, to give an update, to tell how the surgery went. As they speak to the families in this room I hear joking, “Oh she’s awake—giving us a hard time.” I see the tension relieved. Docs squat or get down on one knee—eye level with family. Never stand over seated family to deliver news. 

But I stand up to stretch and see the row of doors behind me—closed doors, no windows, each one labeled:  2915 Consulting Room (In Use), 2916 Consulting Room (Vacant). And I stand and I stare at those doors.

I remember.

I was 18 years old. Allegheny General Hospital. My father was in Intensive Care. I was in the ICU waiting room with my mother and brothers. Other family members came and went for three days. We sat with other patient’s families for those three long days. I watched the pattern of movement. Even then I was a watcher. 

Sometimes—like here—the doctors came out to the family in the waiting room and talked to them—gave an update, described changes in status. 

But twice I saw the nurse call a family into one of the small private rooms and those families never came back to waiting. Once I saw a family leave the little room. They were standing near the elevator, crying. I knew.

So when, on the third day, they asked our family to step into the small private room, I knew. I knew before my mother did. I knew before the doctor took her hand. I knew before my brother held my arm. 

Today, at St. Peter’s I look at those doors at the edge of the waiting room and I wonder at the collective pain that gathers there. I wonder if it aggregates and if they ever use sage to “clear” the rooms, or if they bless them when they are empty, or maybe sprinkle holy water on the tables where wives and brothers drop their heads in surprise, hurt, shock and grief? I hope they do.

I remember.

Wednesday, July 6, 2016

Mary Roach-- Still Not Talking About Sex

I’ve been on a Mary Roach reading binge. Her gift is making science accessible and in particular, making squeamish topics understandable and often bringing compassion to those subjects.

Roach has written about diseases and doctors, swallowing, digestion and elimination, and she has a special fondness for corpses. And, as I wrote last week, she writes beautifully and informatively about sex.

As you know, from reading this blog, I am an advocate for the need to make information about sex and physical intimacy available to couples facing cancer. I push and pull, and cajole and occasionally rant. But I have also assumed that, maybe; in other parts of medicine the conversation is more open, more supportive.

But then I read Roach’s new book, “Grunt—The Curious Science of Humans at War,” and
discovered that sex talk is even more restricted in military medical settings. Alas.

In chapter 4 called, “Below the Belt” Roach is visiting Walter Reed Hospital and she is observing and interviewing urogenital specialists who are repairing and caring for veterans who have injuries “below the belt”. These injuries are called urotrauma. Male vets are having penises, testicles, and urethras rebuilt and sometimes recreated. Yes, very specialized and very sensitive work.

So these are mostly combat vets—the ones who risked life and limb (and apparently their genitals, sex lives and reproduction) for the rest of us to live free. So surely they will get the extra help to deal with their urogenital injuries?

But it turns out, no. Or not so much. It seems the squeamishness about sex extends—sadly—to veterans too. It’s especially odd since the diagnostic term is “urogenital sexual injury.” Clearly acknowledging these parts below the belt have duty assignments.

Here is Roach recalling a conversation with nurse manager, Christine DesLauriers: “Its amazing how many (medical providers) are frightened to bring it up.” 

A Marine once said to DesLauriers, “Christine, I’ve had 36 surgeries on my penis, I’ve had my shaft completely reconstructed, and not one dam person told me how I’m going to go home and use the thing on my wife.”

When Roach asked DesLauriers about the divorce rate, she replied: “Divorce rate? How about suicide rate. And what a shame to lose them after they’ve made it back. We keep them alive but we don’t teach them how to live.”

For me, that’s it right there-whether it’s cancer or combat: Keeping them alive but not teaching them how to live. So let’s keep this conversation open and ask for all medical personnel to get real about how to survive and how to thrive. Longevity and sex.

And yet more on veterans and trauma in my new book, "Never Leave Your Dead" published by Central Recovery Press.

Saturday, June 25, 2016

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.)

Monday, June 20, 2016

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:

Saturday, June 11, 2016

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

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

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.

Wednesday, June 1, 2016

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:


Wednesday, May 25, 2016

Hidden Caregivers--Children Caring for Adults

It's so much more than, "Mommy's Little Helper." In the United States there are tens of thousands of children who are the primary caregiver for a parent or grandparent. These very young caregivers--ages 6 to 16--do more than bring a glass of water--these are children doing primary physical care for an adult. That means bathing, mobility support, feeding and medication delivery and management.

And they need help. But here's the rub: children is positions of medical/physical care can be at risk of a CPS (Child Protective Services) call which would disrupt the family. So what is a teacher, neighbor or clergy member to do?

Find safe ways to get additional help for the family---and look at this fabulous model in Florida's Palm Beach County.

Here's a link to a great article this week by Jane Brody in the New York Times.

Please do share this one with educators, social workers, faith communities. All of us who know the realities of caregiving--and being cared for--can help out.

Here is the link: