Tuesday, August 30, 2011

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

Thursday, August 25, 2011

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.

Saturday, August 20, 2011

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:


Thursday, August 18, 2011

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.

Tuesday, August 16, 2011

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.

Monday, August 15, 2011

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

Sunday, August 14, 2011

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.

Friday, August 12, 2011

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?

Monday, August 8, 2011

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.

Friday, August 5, 2011

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.


Tuesday, August 2, 2011

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?