Tuesday, January 29, 2013

Read About Rehab After Cancer

We are accustomed to seeing people go to rehab after an injury, after surgery and after all kinds of medical interventions--except cancer. That is until now.  In today's Wall Street Journal there is a very interesting article about rehab after cancer treatment--whether that treatment is surgery or chemo or both.

This makes so much sense. The article talks about rehab especially after chemo and its consequent side effects. Many people--John had this experience--have difficulty with walking, balance and small motor control after some of the nastier chemo concoctions. Most people just live with that or figure out their own adaptations or ways to cope. But why not a program of rehabilitation either in-patient or out-patient?

As cancer becomes more of a chronic illness things like "living with" rather than "dying from" lead us to things like rehab for cancer and chemo.

Take a look at this article--link below--and have this conversation with your doctors and oncology nurses. This may be a place where you have to be a strong advocate for yourself or your loved one. In that case print this article and take it with you!

Here's the link:

Friday, January 25, 2013

Saturday Night Widows

While much of our time in Cancer Land is spent with caregiving and managing the logistics of cancer, the thing that takes up most of our mental energy is the thing we talk about the least: Death

The thing about death that we, maybe, don’t talk about enough-- or admit-- is the part about what will happen to us after he/she dies. Yes, I know—you can feel that taboo right away even just reading it, right?

I know that were not “supposed” to think about ourselves. That’s not part of the “loving caregiver” image. We’re supposed to be thinking about them and their needs not our needs-- and certainly not our needs later, right? That’s a big “don’t” of caregiving.  But it’s also true that a lot of the real fear—the part that comes out in secret sobs in private moments-- is the, “What am I gonna do if he dies?” terror.

Of course we know what we’ll do; we’ll live. But that’s also what we’re afraid of. “Live how?” and “Will I ever be happy again?”

I know, I know, we’re not supposed to think such thoughts in Cancer Land. We’re supposed to be unselfish and loving and worry only about him/her. But, alas, we are human.

And now gratefully I have found a book about this very human part of life and loving: a book about the “What happens Later” part, and what happens after the love of our life dies.

The book is called, “Saturday Night Widows” and it is brand new. Written by Becky Aikman who was widowed at 42 after her husband’s death from cancer. What is startling and refreshing about this book and Aikman’s approach is that she tried the traditional route of recovery—debriefing and bereavement group but it was a bust. Her “failure” in traditional grief work led her to do a ton of research on grief and bereavement and she discovered that a lot of what we have been taught about the process of grief and grieving is mostly wrong.

For example, Aikman talks to grief experts who confirm that the Kubler-Ross “Stages of Grief” were never actually stages of grief. They were, and are, stages of the dying process. Kubler-Ross worked with people who were dying but over time we told and retold those famous “stages” as grieving gospel. Not true. No stages. More like waves that diminish over time.

And another myth Aikman debunked: you don’t have to talk, talk talk. In fact the over-telling is re-traumatizing. Turns out that new experiences and happy experiences are the real medicine for grief. 

So “Saturday Night Widows” is full of great info, facts and the latest research but it’s more than that. It’s also a really fun and inspiring story. Aikman gathered a group of new, youngish widows and tried out the new ideas for all of their healing. The cooked, shopped, traveled, made things. And yes they cried, worried and talked about their spouses too, but it was a very different experience than what you’d see in a traditional grief group.

This is the book for your friends who have had a death. The book is about widows but it fits men too and maybe siblings as well. It’s a book that I hope cancer care centers and oncologists will make available. It might even be a wonderful book to read as a caregiver. It offers hope that while, yes, we do fear his/her death we can be and we will be just fine later.

Monday, January 21, 2013

Keep Asking Questions

In yesterday's New York Times I read this great article (link below) by Theresa Brown--an oncology nurse who makes an excellent case for asking and asking and asking. She describes a breast cancer patient, Amy Berman, who had to make a clear decision about her treatment and life plans after a stage 4 diagnosis.

The point of this is that at the very time that your head is spinning with fear and anxiety and even hope you have to step back and think, feel and discern what is right. I do think that's pretty hard to do for most people. We want to hear "I'll cure you" and we want to hear, "This can be fixed".

I think what it takes is thinking and talking beforehand. Talking to loved ones and talking to friends --even those "What would you do if...?" conversations can be helpful.

And then also including family and friends after the diagnosis and during the research/second opinion phase. But--and an important but--you have to be be mindful about whom you include. You want the family and friends who will support your desires--not their needs and fears.

Take a look at this article and maybe forward this link to family and friends to initiate a conversation about, "What if..."

Here's the link:


Saturday, January 19, 2013

Looking for Signs

I am sooo happy to announce that my new book, "Looking for Signs"--a collection of  essays is out! It includes some of the short essays  you have read here on Love in the Time of Cancer and also work from the many newspapers that have published my columns over the years. I'm very excited--this is certainly a gift .

"Looking for Signs" is available at The Book House in Albany, NY; at Market Block Books in Troy, NY; at The Book Loft in Great Barrington, MA. and on Amazon.com. Here is the link for "Signs" at Amazon:


Friday, January 18, 2013

Bye Bye Lance

The Amy Winehouse House was not asked for an official comment on last night’s Oprah interview with Lance Armstrong. But our founder taught us to never wait to be asked. So here goes: We haven’t liked that dopey guy for years. He is arrogant, mean—(such mean little eyes, no?) and now the fool has taken on Oprah. Oh well. Our dear founder (RIP) was a musician and singer and had only great respect for her peers so we couldn’t help shouting at the TV, “Ask Cheryl Crowe!” and “This jerk broke Cheryl Crowe’s heart?” Watching this guy with Oprah can you just imagine what a prick he was in an intimate relationship? Cheryl, you are in a better place. And yes, our dear Amy is too.

For those of you who are new and have not heard about our specialized cancer support center here is a post from 2009 when I created The Amy Winehouse House:

(Love in the Time of Cancer 2009)    

A couple of weeks ago we visited a local support group for people with cancer to see what services or support might be available. The house is lovely and there are many activities, support groups etc. But about 30 minutes into the orientation I picked up the whiff of overriding condescension that accrues around cancer. Part of it is the pastel and pretty approach to surroundings but it’s also apparent in the tone of voice that is used by staff. It’s a cross between the voice you use when talking to a small child and the voice one uses talking to someone with Down’s syndrome or to someone in the midst of a psychotic break. The other hint at condescension is the two-handed handshake: the staff member takes both of your hands in theirs. This is accompanied by the long, deep gaze, which immediately feels like someone told the staff how important it is to make eye contact and that “people with cancer need to be seen.” Well, they are going to make dam sure you know you are seen.

But the greatest tip off to the fact that once you have cancer you’ll never be treated like a competent adult again is revealed in the list of activities offered. At the support center, the counselor told me--with that kindergarten teacher lilt in her voice, “We get together on Thursdays and make smoothies.” Smoothies.  As I told John on the way home, “I have never made a smoothie in my life so why would I make smoothies in someone else’s kitchen with a group of strangers just because you have cancer?”

That smoothie was the turning point for me and it set me to thinking about the kind of cancer support place I’d like to create. Hence the birth of The Amy Winehouse House.  So here are some of the things that are offered at the Amy Winehouse House:

The mission of The Amy Winehouse House is: Fuck Cancer

We believe that cancer and its treatment is fierce and so everything around it should meet that fierceness head on and not back down into pastel prettiness. We don’t coddle and we don’t play word games. We don’t parse “living with” versus “dying from” cancer.

At the Amy Winehouse House we are not nice and not pastel. We don’t believe that having cancer makes you nice or pastel either. If you were a jackass before you got cancer now you are a jackass with cancer. We don’t ask you to share, process, make crafts or drink smoothies. We offer no bookmarks or anything that has or requires a crocheted cover.

All activities at the Amy Winehouse House are optional and include:
Making martinis
Strip poker night
Learning how to hot wire a car
Our book group is currently reading, “Snuff” by Chuck Palahniuk
We have a smoking room ((if you have cancer and are going to die we want you to enjoy a cigarette on us.)
On Saturday nights we have strippers. Yes for girls too.

And we certainly do have drug education.  We think of this as self-chemo. Our role model, Amy Winehouse, was an expert on self-chemo. Our self-chemo classes explain how to smoke crack and how to play the cancer card to score some medical marijuana. Our movie nights include pornography.  (After all, cancer is pornographic so why get all puppyish and pastel about something that is violent and intrusive.)

In future entries I’ll explain the Board of Directors and our policy for volunteers. (We don’t have tee shirts but you do have to wear eyeliner.) We’ll also talk about why we hate Lance Armstrong (We call him “One Ball” around the House.) And, yes, we have bracelets too, but ours say, “Fuck Cancer.”

Thursday, January 17, 2013

Alanon for Caregivers

I was at an Alanon meeting this week. Alanon is the 12 step program for family members or friends of someone with an addiction. So I realized that Alanon is a great resource for cancer caregivers. (And don’t we all qualify for Alanon? Do you know anyone who doesn’t have a relative or friend with addiction or recovery in their story?)

The ideas that are discussed in an Alanon meeting are all things that we struggle with as caregivers: We are powerless; we struggle to admit our powerlessness; we try to find the right Higher Power; we have to stop making cancer or the oncologist or the loved one with cancer into our Higher Power; we need prayer and meditation; we have to stop giving advice --and the thing that is key and so, so hard to practice: We have to learn self-care and to keep the focus on our selves.

Yeah, I know, “Keep the focus on yourself”. Seems crazy but it’s true. People in Alanon know about this: at the very time it seems impossible to stop focusing on the other person is exactly when you have to shift gears and go to self-care.

And no one can do that alone. That’s why we have caregiver support groups and phone lines for cancer caregivers and places like The Hope Club and Alanon. We need each other. I need the wisdom you have today, and I’ll loan you mine tomorrow.

Take a look at the Twelve Steps. They can work for cancer and caregivers too.

Monday, January 14, 2013

Maybe Fear Just Is....

I watched the Golden Globes last night and I was struck by the number of women who mentioned their self-doubt or "not fitting in" or having fears about their work/career/talents. And today I read the New Yorker piece by John McPhee--who is an extraordinary writer and The King of nonfiction and a literary star by anyone's account and he writes about the "terror" he faces when he begins a new piece.

It is making me re-think fear. Maybe we should not (I should not) spend so much time (and energy and money) trying to get rid of fear. Maybe just accept it? Maybe just say "Yep--more fear" and keep going?

Maybe treat fear like a toddler having a tantrum. (It's kind of like that really...) And say, "Okey-doke sweetie, when you're done with that tantrum I'll be right over here.

Friday, January 11, 2013

Dying Nurse Is a Nursing Teacher

Here is a great story from today's New York Times. Martha Keochareon was a nurse with a passion for teaching. This passion--or dharma--carried through all the way to her deathbed where she offered herself as a study subject for nurses in training.

Read this article (link below) to see how passion and usefulness persevere no matter what but also to see how death from cancer is described and managed. It is quite moving too to read how the nursing students came to understand the role and experiences of family caregivers in cancer care.


Monday, January 7, 2013

Move a Muscle Change a Thought

What happens to our bodies and our brains when we are caregivers?
We know a lot about the brain and addiction and stress. We know that caregivers are at high risk of misusing drugs and alcohol abuse and eating problems. The attitudes of people around us are not always the helpful. “Well, she deserves a glass of wine” or “Sure he smokes some dope but really—all that stress—he has to relax.” Or, “Yes she’s gained a lot of weight but taking care of her partner is really hard.”

But what are we missing? How can we manage that stress and even the trauma of caregiving?

This week I’ve been at a workshop with Bessel van der Kolk—who is the Director of The Trauma Center in Boston and considered by many to be the world’s top expert on trauma. He talked a lot about what happens to soldiers and veterans, of course, and what happens to people that experience terrible sexual traumas or who are in horrific accidents. Those folks come to him for help.

But he also talked about the relationship between trauma and stress and addiction. He talked about what happens to doctors and nurses and caregivers. We’ve known about that intuitively, of course. Most professionals recommend support groups where we are encouraged to process our stress with lots of talking and sharing. But van der Kolk explained that talking can only help to a degree; we need to change the body first or words won’t work. “Calm the body to calm the brain,” he says.

That helped me to understand why I can’t always talk myself out of my feelings, and why it’s frustrating when someone says, “You don’t need to feel that way” when we are mad or sad or scared. We can’t get at thoughts with other thoughts—we need to go through the body.

What trauma experts like Bessel van der Kolk recommend are breathing exercises, yoga, walking, stretching, dancing (not any formal kind just moving around to some music)—movement. Now it’s been documented: Changing the body can change the brain.