Sunday, August 14, 2016

Beach Surrender

We went to Cape Cod this weekend. In the morning I go to the beach alone to pray. My favorite beach prayer involves writing the names of each person I’m thinking about on the edge of the shore and watching as the tide comes in and gradually takes those prayers out to sea.

This weekend I wrote the names of all of our family members --his and mine, adults and kids, parents, exes, kids and their spouses too. I wrote his name and my name and the people I work with. It’s a lot of writing and a way of surrendering each person that I love
and even the people that I fuss with in my head.

 I live in the gap between wanting to make a complete surrender, making that surrender for an instant or a moment and then, seeing, even as I walk aback to my car how worry returns and how quickly my tendency to control is already back in my head.

Surrender is such an imperfect process but it is a process. I really do wonder about people who say they made their surrender once and it’s all done. Do they really never worry again? Worry means that I still think I can affect an outcome. Curiosity might be the antithesis of worry. Being able, after surrender, to wonder: “I wonder how God is going to play this one out?”

Maybe this worry of mine too is something I need to surrender.

Over and over I surrender and return. It’s familiar. The ocean’s rhythm: in and out, in and out, washing, soothing, wearing me down. Creating surrender.

Sunday, July 31, 2016

Immunotherapy Uses Drugs to Boost Immune System for Cancer

This weekend's New York Times featured the second article by health writer, Denise Grady on the
Denise Grady, New York Times
increasing practice of "Immunotherapy". Currently, an experimental treatment, immunotherapy uses drugs to boost or challenge the patient's own immune system to fight cancer.

Here is the article in this link to the New York Times:

Tuesday, July 26, 2016

Baseball is Back

Baseball season adds another layer to our lives. We both love the game and are able to
teach each other. He knows more about NOW and I know more about THEN. I love the history, and he loves the Yankees. It’s a source of humor, anger, passion and of competition. It’s a source of metaphors too—many of them sexyl --which makes it even more fun.

Here’s to getting to third base, and charging home with a scream and a cheer!

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: