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.