Hope 2011 An Evening for Women Cancer Survivors--and Their Friends.

For women in the New York Capital Region area—please mark your calendar for this evening/dinner event: provocative conversation, humor, gourmet healthy dinner and Miche handbags!


Join us for:   H.O.P.E. 2011: Honoring Female Cancer Survivors:
Opening Up Communication * Providing Education * Empowering Lives

Date: Thursday September 15th, 2011

Location: Hilton Garden Inn 235 Hoosick Street Troy, New York

 A Healthy Gourmet Supper with Presentations: “Difficult Conversations”

The Fear of Mammography and Colon Screening
Sabrina Mosseau BS,RN,OCN – Administrative Director Medical Oncology and Women’s Health; Samaritan Hospital Cancer Treatment Center

The Silence about Sex and Intimacy
Diane Cameron Pascone – Director of Development - Unity House Troy, Contributing writer to the Times Union

The Importance of Money Strategies for Women
Christopher Nuss MBA, ChFC, CLU,CLTC – Wealth Management Advisor – Northwestern Mutual Financial Network

Time: Registration @ 5:30pm Dinner and Presentations @ 6pm

There is a $15.00 fee to attend this program. This will be collected at the door.

Registration required by September 9th to Sabrina Mosseau @ 518-271-3324 or mosseaus@nehealth.com

Patience Humor Computer

I’ve been gone for days in New Computer Land. Not just new but also my first Mac. ( A MacBook Pro ). She’s so pretty and slim and graceful and making me crazy. I knew I had to be a beginner all over again and I knew I’d have to play, explore and experiment, but I forgot that it would also feel frustrating. A lot like being in a new relationship—minus the good sex.

I can instantly see my control issues, my insistence on having things my way and perfectionist? I want to know how to use it already. (I want to be loved now—today). But I don’t and can’t until I play, experiment and oh yeah, go to school.

So a new commitment to my newest relationship: to be gentle and kind and to laugh and to trust that Ms. Mac and I will bond.

CancerLand at Omega Institute

Omega Institute in Rhinebeck, New York is one of my favorite places. Great workshops, great food, great people. I've had many wonderful expereinces there over many years. I'm a fan.

I just recieved this link to a cancer event/weekend at Omega with some amazing speakers/presenters including Mukherjee who wrote "The Emperor of All Maladies: A Biography of Cancer".

September in Upstate New York is beautiful so check this out:

http://www.eomega.org/omega/workshops/6effa2eaa63291e518493a4bbdfca934/?source=ePromo.OM.FM

Flashback Backlash

That’s what it felt like last night.

After yesterday’s visit to the oncologist with John for a quarterly check-up a wave of grief, anger, hurt and fear hit me hard. No sleep last night just wide awake nightmares and scenarios of chemo-days and the loneliness of those two years flooding thru me.

Being at the chemo center was the trigger. It felt like a huge delayed reaction. Maybe it hits now because I am safe enough now and we are safe enough now and the cancer crisis is far enough away now so I can fully absorb how painful it was then. And it was so painful then.

Here’s what I understand: the body can only do so much and hold so much pain. Then it gets shoved way down. To spring up later. Kind of like caregiver PTSD. I made my pain worse in those two years of John’s diagnosis, surgery, chemo and post-chemo exhaustion and recovery from awful side effects. I didn’t want to admit the fear and the loneliness—especially the loneliness. I was afraid to say—back then—how hard it was because I was afraid that someone would think I wasn’t loving enough or a good enough girlfriend. I really believed that I needed to be that uncomplaining, sacrificing caregiver.

All the advice I give so freely now: use your support group; complain like mad; speak up; find two people who can hear all of your real feelings—I learned the hard way. Maybe that is why my passion for cancer caregiving is so strong.

But even two years later as we still live in Cancer Land I’m having to release so much pain.

Changing Demographics Changes Caregiving

While much of what we talk about on this blog is related to cancer it’s important to know that cancer is no longer a “stand alone” illness or disability. There is no longer a sick spouse and a well spouse—even though a lot of the discussion around caregiving is framed in that false dichotomy. Because of the dramatic shifts in demographics and changes in healthcare it’s very unlikely that a family or a household will deal only with cancer.

Here are some statistics on aging, cancer and chronic illness in the New York Capital Region:

*By 2015 the number of people over 60 will increase by 40%

*By 2012 six out of 10 people over 60 will manage more than 1 chronic illness

*By 2020 cancer survivors will increase by 55%

*By 2021 the age group of people 85+ will increase by 35%

*By 2012 the number of formal caregivers (nurses, aides, case managers) will decrease by 20%

If you look at those statistics side-by-side you’ll see the dilemma we are facing: The good news: more of us will live longer. But the fine print that we forget to read says we’ll live longer with cancer and with multiple chronic conditions. It also means that our caregivers will also live longer but with much more complicated health issues of their own. What that good and bad news really means is that most of our households will have multiple caregivers –spouses and partners will trade roles most of the time or will be simultaneously caregivers for each other.

This is a consequence of better healthcare and of the rapid changes in cancer treatment.

You may be experiencing this. One member of your family may have cancer but someone else in the family has heart disease, diabetes, rheumatoid arthritis, dementia, MS, or another form of cancer. As we age better, and live longer, this will go back and forth multiple times.

Wedding Poem for our Anniversary

Thank You, My Fate

Great humility fills me,
great purity fills me,
I make love with my dear
as if I made love dying
as if I made love praying,
tears pour
over my arms and his arms.
I don’t know whether this is joy
or sadness, I don’t understand
what I feel, I’m crying,
I’m crying, it’s humility
as if I were dead,
gratitude, I thank you, my fate,
I’m unworthy, how beautiful
my life.


— Anna Swir
Translated from the Polish by Czeslaw Milosz

Crazy Sexy Cancer Questions

Is cancer really this much fun? This chic? Is Kris Carr this energized because she didn’t have chemo or surgery? Am I just being cranky? Or is this really a new way to do cancer now that more cancer is chronic and not a death sentence?

What do you think? Click on the link below to read about Upstate New Yorker Kris Carr and her Crazy Sexy Life.

http://www.nytimes.com/2011/08/14/magazine/kris-carr-crazy-sexy-entrepreneur.html

Ribbons for Caregivers?

This week I participated in a great seminar on cancer and caregiving presented by the organization To Life! Tons of new information on genetic testing and hormone replacement therapies. Answers to the questions you didn’t even know that you wanted to ask. But it was –again—the conversations with caregivers that blew me away. How much life caregivers spend without even knowing how deeply they are committed or how much it might be affecting their life and health.

I always think that people must know the impact of caregiving and then each time I talk to a group it’s there again: caregivers are working fulltime, raising kids, caring for at least one elderly parent and a spouse or partner with cancer. And they are apologizing about some part of their life they are not doing well: missed a friend’s birthday; haven’t followed international news; missed a new movie. And the big thing they are skipping is attention to their own healthcare and that has disastrous effects for the caregiver and the family.

Caregivers skip annual physicals, mammograms, blood tests, dexascans, teeth cleaning, medication monitoring. Nobody wants to go to another doctor when you are actively caring for someone with cancer—you see far too many medical waiting rooms—with awful magazines and terrible TV—and so caregivers get sick.

We know that breast cancer is hard and colon cancer is hard and lung cancer is hard but caregiving is hard too and mostly it goes unacknowledged by medical professionals even though there are big medical consequences.

So, what color is the ribbon for caregivers? Should it be a rainbow because caregiving encompasses every serious illness? Or should the caregiver ribbon be clear plastic because caregiving and its consequences are still invisible?

A Free Workshop for Women Concerned with Cancer--- & Caregivers

To Life! Presents... Beat the Odds
A Workshop with Breakfast and Presentations for Women Concerned with Cancer—Patients and Caregivers.

This Wednesday in Saratoga Springs, New York:

Wednesday, August 10, 2011  at the Gideon Putnam Resort

24 Gideon Putnam Rd, Saratoga Springs

Breakfast at 8:00 am Presentations to follow at 8:45 am

The Role of Genetics in Cancer Diagnosis & Treatment

Presented by Luba Djurdjinovic, Executive Director of the Ferre Institute

Hormone Therapy—What is Right for You?

Presented by Dr. Vinita Singh, Medical Oncologist at Samaritan Hospital Cancer Treatment Center

Caregivers: Perspectives on Caring for Your Loved One

Presented by Diane Cameron Pascone, Times Union columnist and teacher of caregiving courses

To register call To Life! at (518) 439-5975 x22, or e-mail lglavin@tolife.org.

Cancer Is Not Your Only Job

Here is a great resource when cancer is not your only job. Many of us are managing cancer and work--fulltime, parttime, all the time. CancerandCareers.org has advice on the law, practicalities around workplace communication, talking about your cancer during a job search and lots of guidnace on how to keep and manage your job--and your career--with cancer.

Lots here for cancer caregivers too.

Click below and bookmark this site in your favorites.

http://www.cancerandcareers.org/en?utm_source=google&utm_medium=cpc&utm_term=cancerandcareers.org&utm_content=Cancer+and+Careers+Org.&utm_campaign=CAC_Branded_GRANTS+Account

The Big C

We are watching the first season of the TV series “The Big C” starring Laura Linney. (Last seen as a family caregiver in “The Savages” with Philip Seymour Hoffman”). The Big C is wonderful, witty and thought provoking. And it hits every stereotype about cancer: the smarmy platitudes, the saccharine support group, the “cancer is a gift” message and the “your anger caused your cancer” craziness. Linney just explores and pushes back in the most wholly human and imperfect ways.

The premise of the show is great: What would you do if you were diagnosed with a late stage cancer and you knew and your doctor knew but there was some delay—weeks? months?--before anyone else knew. In that cocoon of time and spiritual space who would you become? What  would that secret knowledge let you try out before the expectations of “cancer patient” surround you?

Evening Gatha

In Zen Buddhism a gatha is a song or hymn that is chanted as part of one’s practice. This evening gatha was a gift from a friend. It hangs in my bathroom.

Evening Gatha:

Let me respectfully remind you~
Life and death are of supreme importance~
Time swiftly passes by, and opportunity is lost~
Each of us should strive to awaken…..
.....awaken
Take heed. Do not squander your life.

Workshop for Women Cancer Patients and Caregivers August 10th

To Life! Presents... Beat the Odds

A FREE Workshop with Breakfast and Presentations for Cancer Patients and Caregivers.

Date: Wednesday, August 10, 2011

Location: Gideon Putnam Resort
24 Gideon Putnam Rd, Saratoga Springs, New York

Time: Breakfast at 8:00 am Presentations to follow at 8:45 am

Tpoics and Panels:
The Role of Genetics in Cancer Diagnosis & Treatment
Presented by Luba Djurdjinovic, Executive Director of the Ferre Institute

Hormone Therapy—What is Right for You?
Presented by Dr. Vinita Singh, Medical Oncologist at Samaritan Hospital Cancer Treatment Center

Caregivers: Perspectives on Caring for Your Loved One
Presented by Diane Cameron Pascone, Times Union columnist and teacher of caregiving courses

Pre-registration is required by August 7, 2011.

To register call To Life! at (518) 439-5975 x22, or e-mail lglavin@tolife.org.

A Broken Toe

It’s the little things not the big ones that test my humility and self-concept. I made it through cancer, caregiving and blended family craziness, but last night completely lost it over my little toe.

I broke my toe. I was rushing and turned quickly and tripped over John. (I’ll let my therapist sort out the deeper meaning of that.) I went down howling at the sharp pain but came up sobbing that “I don’t have time for this right now.”

You would think that I have had so many ways in the past few years to learn that life happens when you are making other plans, but my ego insists she will have her way. I’m laughing at myself, and I’m not. I see in this how hard it is to take care of myself, to accept life on life’s terms and to just be human.

Chicago

I’m home now from Chicago. A wonderful vacation in a new city with an old friend. I met my friend Brigid in Chicago and we had art, culture, shopping, and endless talking about our lives. Brigid and I know each other 30 years but we haven’t lived in the same city for the last 15. Earlier this year it seemed that the friendship would break from the distance and changes in our lives. We were young, single women together in Baltimore and shared passions for art and food and self-improvement.

In Chicago we went to museums, the symphony in the park and walked Michigan Avenue until our feet burned. Then we went to the Nordstrom shoe department for relief. And we talked nonstop about how our inner lives had improved and the parts that still resisted change. We swapped names of therapists, gurus and self help books.

It also felt good to go away alone—to have all that quiet time in travel---the good news of long waits in airports is that it gives me a huge amount of quiet and solitude and that really feeds my writer/creator self. I was delighted to find that Chicago’s Midway Airport has a Chapel and Spiritual Center in the airport. I went there to pray and meditate and be still.

Do Not Disturb

On my office door I have one of those hanging cards from a hotel that you attach to the doorknob to advise the housekeeping staff of your wishes. This one, from a hotel in Toronto, says “Do Not Disturb” on one side. On the flip side of the card is the same phrase in French—“Ne pas deranger”. But, as my husband pointed out, the literal translation of this phrase in French is, “Do Not Derange”. I love that. It’s fair warning to anyone in my life.

Sleeping with Bread

A favorite book of mine is called, “Sleeping with Bread” by Dennis, Sheila and Matt Linn. It’s about a simple discernment process that the Linns teach—helping us to see what matters and what brings us joy.

My favorite part of this book is the story that gives the book its title. This is the story:

“During the bombing raids of World War II thousands of children were orphaned and left to starve. The fortunate ones were rescued and placed in refugee camps where they received food and good care. But many of these children who had lost so much could not sleep at night. They feared waking up to find themselves once again homeless and without food. Nothing seemed to reassure them. Finally, someone hit upon the idea of giving each child a piece of bread to hold at bedtime. Holding their bread, these children could finally sleep in peace. All through the night the bread reminded them, “Today I ate and I will eat again tomorrow.”

I love everything about that story –the problem and the simple solution. I can relate to the persistence of old feelings and fears—and how any kind of deprivation can cast a long shadow.

Each time I read it I ask myself: What am I trying to hold on to now to meet a need that was in the long ago past? Are all my shoes a kind of “bread”? Old relationships? Old ways of relating to others? And what new bread might I ask for and hold instead? Bread is a spiritual metaphor in every faith—so what “bread” can I hold onto instead of shoes, scarves, resentments, fears, jealousies and my own cozy ego?

Cancer Doesn't Correlate

We so badly want cancer to be caused by something other people do that we don’t. She used to smoke. He eats so poorly. She’s a worrier/has a lot of anger/doesn’t express feelings. He was always in the sun. Maybe it’s a family thing? Was there cancer in his family? Didn’t her sister have cancer?

It’s our voodoo hope. “If I don’t do the things the things they do I won’t get cancer.”

But no, cancer doesn’t correlate.

Infidelity Keeps Us Together

That’s the title of yesterday’s cover story in the New York Times magazine. Mark Oppenheimer writes about sex columnist Dan Savage and Savage’s suggestion that marriages need less fidelity and more flexibility. Basically what Savage is suggesting is that monogamy isn’t quite natural and that we do relationships a disservice by pretending or insisting that absolute monogamy be the standard.

What’s good is that Savage is not espousing secrets or affairs or running around—rather he’s advocating for talking to your partner before, after, and during marriage to say, “This is who I really am; what I really want; and “Will you still love me if I need to try this out?” In a way, he’s talking about a very high form of commitment.

But just the title and then reading the article was disturbing. (Click on the link below to read the article). Right away I found myself asking, “What if John said he needed something –some kind of sexual experience—I couldn’t offer or even try?” Would I love him enough to say, “Ok, go be you?”

I doubt it.

In the article other experts on sex and marriage weigh in to say that some open marriages work but most do not—not because of the sex but because of the emotions and the dishonesty—again, not the dishonesty of the partner who needs to go outside the relationship but the dishonesty of the partner who agrees or acquiesces and then realizes they really are not OK with that.

But then the bigger and more personal question to myself is this: Do I have the right to want and insist on monogamy and fidelity in our marriage? This is a marriage that came to be from infidelity—so did I forfeit my rights by marrying a man who left his wife? Or do we painfully know just how high the cost is and not wish that on ourselves or on any others?

Reading this article provoked a deep and daring conversation with John about our love life and our sex life and our intellectual lives—and how we keep all of those alive so we can keep things fresh and exciting. And what it means to be sexually “good, giving and game” in a monogamous marriage.

http://www.nytimes.com/2011/07/03/magazine/infidelity-will-keep-us-together.html

Pure Romance

In the Sex and Cancer workshop a few weeks ago I got to hear Vickie Yattaw, who is a Registered Nurse and Oncology Educator. She provided a lot of resources. One was the company, Pure Romance—a “sensuality toy company”. Vickie recommended some of their lubricants for women during and after chemo and cancer.

These products are, of course, great for women during and after menopause as well. So I went online to www.PureRomance.com to place my first order. I’ll keep you posted on the products—I bought one that is pretty basic and one that is described as “chocolate” and “tingling”. We’ll see.

But the best part of my little adventure on the Pure Romance site is the founder—Patty Brisbane’s -- blog called “Under the Sheets”. She writes about couples and communication. It is the most delightful thing to see sex framed in the context of good communication and good relationships.

http://www.pureromance.com/