It still makes me crazy when we talk about curing certain diseases and we don't think about the consequences. We are in the middle of a huge demographic shift at the same time we are in a healthcare revolution. It means there will be an unprecedented number of us living much longer.
Now on the surface that sounds great except that living longer doesn't really mean "living" longer. It means our bodies will survive and we'll have multiple chronic illnesses. Cancer is rapidly becoming one of those chronic illnesses. This means lots of disabilities, lots of ongoing treatments, surgeries, medications and their side effects. And that means every one of us will both have and be a caregiver. That is, in fact, the emerging model of caregiving. There is no longer a sick spouse and a well spouse but alternating and simultaneous caregiving. That's tough.
Here are some numbers: Cancer deaths now peak at age 65 and kill only 20 percent of older Americans. Deaths from organ failure peak at age 75 and they kill another 25%. The number of Americans over 85 is expected to more than double by 2030. So the norm for aging is becoming a long, extended period of serious illness and chronic disability which will require ever-increasing assistance.
Yeah, I know, happy news? But we spend so much time pretending that aging and dying happen to other people so these facts can help us talk about aging and caregiving and communities and strategies.
Friday, March 23, 2012
Tuesday, March 20, 2012
Emu Oil and Your Love Life
Vaginal dryness is a factor for all women of a certain age. That's for certain. That age could be 30 if you are postpartum, or 58 if you are postmenopausal, or any age if you are post chemo. Nothing takes the fun out of sex more quickly than feeling like your most tender places are being scraped and torn.
You probably know about lubricants--water-based and silicone based. Try both to see what you like. You can buy them now in grocery stores and drug stores but if you are shy buy them online. If you are over 40 ask your friends. They are using them and you may not know because you are not talking about it.
Recently a friend told me about another sex life saver that is also a daily comfort. It's Emu Oil. Yes, Emu Oil. Uh huh, I did the same thing. I said, "You mean that critter--the big bird that's like an ostrich?" Yes indeed. Oil from the Emu is magical. You can use it every day on your labia . (I was going to say "down there" But I swore I would not use euphemisms for sex or body parts, especially after so many folks in Cancer Land can't say penis, vagina or fellatio.)
Here is what I learned that you need to know: It is not messy. You hear the word "oil" and you think, sticky, oily, staining. Nope. the consistency is more creamy or gel-like. It's not oily at all. You don't feel slimy; you just feel nice. No more sandpapery tissues tearing or burning. And that is also good for your sex life. When we feel juicy and flexible we are more willing to get in the mood even when we are not in the mood.
And after a certain post-40 age sometimes you have to try just to find out that you are in the mood.
You can find Emu Oil on Amazon or lots of online pharmacies.
You probably know about lubricants--water-based and silicone based. Try both to see what you like. You can buy them now in grocery stores and drug stores but if you are shy buy them online. If you are over 40 ask your friends. They are using them and you may not know because you are not talking about it.
Recently a friend told me about another sex life saver that is also a daily comfort. It's Emu Oil. Yes, Emu Oil. Uh huh, I did the same thing. I said, "You mean that critter--the big bird that's like an ostrich?" Yes indeed. Oil from the Emu is magical. You can use it every day on your labia . (I was going to say "down there" But I swore I would not use euphemisms for sex or body parts, especially after so many folks in Cancer Land can't say penis, vagina or fellatio.)
Here is what I learned that you need to know: It is not messy. You hear the word "oil" and you think, sticky, oily, staining. Nope. the consistency is more creamy or gel-like. It's not oily at all. You don't feel slimy; you just feel nice. No more sandpapery tissues tearing or burning. And that is also good for your sex life. When we feel juicy and flexible we are more willing to get in the mood even when we are not in the mood.
And after a certain post-40 age sometimes you have to try just to find out that you are in the mood.
You can find Emu Oil on Amazon or lots of online pharmacies.
Friday, March 16, 2012
Bracketology
We love March Madness! One of the first things John and I did as friends was make to brackets and compete with each other. I love the flow chart of it and the guessing (for me it's guessing) and I love marking it up each day as my teams disappear. Most of my criteria are geographic (Pennsylvania and Maryland teams have an edge) and cool names. I always pick Xavier and Murray State just because of the names.
But it's also gotten me to wonder about creating a cancer bracket. We already kind of have Cancer Madness and that perceptual flow chart thing goes on in the way we think. So what if we laid it all out and said, "Does Breast cancer beat Melanoma? and does Lymphoma trump Colon?" and which cancer is at the scary center: Ovarian? or sure fire, always a killer, Lung Cancer?
Las Vegas would join in for sure. And we're doing this in our heads, all the time, anyway.
But it's also gotten me to wonder about creating a cancer bracket. We already kind of have Cancer Madness and that perceptual flow chart thing goes on in the way we think. So what if we laid it all out and said, "Does Breast cancer beat Melanoma? and does Lymphoma trump Colon?" and which cancer is at the scary center: Ovarian? or sure fire, always a killer, Lung Cancer?
Las Vegas would join in for sure. And we're doing this in our heads, all the time, anyway.
Sunday, March 11, 2012
Basho on Ancient Caregiving
On the road from Palm Beach….
On this trip I’ve been sampling Kindle’s new short pieces of
writing and read Jane Hirschfield’s wonderful essay on “The Art of Haiku” and
Japanese haiku master, Basho.
Basho—poet, samurai, and Zen master—wrote and taught in the
1680’s. So when, in her essay, Hirschfield writes about his emotions struggles
caring for family I sat up and said, “Wow…even then caregiving was hard.”
In describing his later years when he was caring for an ill
nephew and was frequently sought out by more students and fellow poets for help
(haiku in its Basho perfected form is a kind of spiritual/psychological
process)…. Basho wrote:
“Crushed by other people’s needs, I can find no calmness of
mind.” This from a Zen master! After the nephew’s death Basho shut himself off
for a year to recoup his peace of mind and his own health.
Caregiver stress in the 1690’s. That helped me to see—again—that
it is a human phenomenon—not a personal weakness or a feature of modern
culture.
Wednesday, March 7, 2012
Letting Go
There is so much letting go to practice. Cancer Land brings letting go of John, his health, his doctors, the outcomes--many little outcomes (tests, appointments, complaints) and the big one--death. But there is so much more letting go I have to practice and so much of it is about other people.
I've read more than a dozen books about letting go and I can't count the hours and dollars of therapy. I don't discount any of that. It's helped and it's moved me forward and it's also made me more aware of how much more I need to let go. Melody Beatty is my favorite writer on this topic. She writes about addiction and recovery and codependency but "letting go" is the theme.
To be able to let go I have to be able to let go to something else or into something else. For me that something else is God, so I realize how much I need that relationship, and to have that relationship I need spiritual practices in my life.
I'm grateful that I have friends who I can talk to about God and faith and prayer and meditation. Last night I had one of those conversations with a good friend. We talked about our relationships, the ones with real live men and the ones we have with God. That's intimacy.
But this morning I come to letting go again. Maybe letting go of other people and what they think is a spiritual practice. I can say the words. I can pray for help. But my behavior tells me where I really am.
I've read more than a dozen books about letting go and I can't count the hours and dollars of therapy. I don't discount any of that. It's helped and it's moved me forward and it's also made me more aware of how much more I need to let go. Melody Beatty is my favorite writer on this topic. She writes about addiction and recovery and codependency but "letting go" is the theme.
To be able to let go I have to be able to let go to something else or into something else. For me that something else is God, so I realize how much I need that relationship, and to have that relationship I need spiritual practices in my life.
I'm grateful that I have friends who I can talk to about God and faith and prayer and meditation. Last night I had one of those conversations with a good friend. We talked about our relationships, the ones with real live men and the ones we have with God. That's intimacy.
But this morning I come to letting go again. Maybe letting go of other people and what they think is a spiritual practice. I can say the words. I can pray for help. But my behavior tells me where I really am.
Thursday, March 1, 2012
Art and Death: Holding Our Own
I watched this extraordinary documentary with three good friends
this week. I had seen this film in a class on Caring for the Grieving last year
and I was so moved I had to have my own copy. I tracked it down and made a
movie night. It’s not everybody’s idea of a chick flick—but really, in a sense this
is the ultimate love story and a heartbreaker that makes you happy to cry a
lot.
Holding Our Own is about fabric artist Deidre Scherer who
creates “paintings” from her real life sketches of people who are dying.
Her work is extraordinarily beautiful and her craft amazing in the ways she
creates super-realism in portraiture using layers of fabric. But the other
beauty is her belief in and her philosophy of the role that death plays in life.
The second focus of this film is the Hallowell Chorus in
Burlington Vermont. Hallowell is a group of amateur and professional singers who
volunteer to sing at deathbeds and in hospitals with people who are near death.
Again, no, it doesn’t sound like fun but in fact this is stunning.
Watching this extraordinary film with close friends led us to an intimate conversation about our beliefs in life after death, and what we might like for our funerals and our desires for the way we’d like to experience the end of our
lives.
Holding Our Own was produced by Paul Newman and it’s
available from Netflix or can be purchased on Amazon. It’s a fabulous
intersection of creativity and death—which is to say generation-- or life and
death.
Tuesday, February 28, 2012
Why Doctors Die Differently
Look at this article from Sunday's Wall Street Journal. Doctors--even those that treat cancer--make different choices than their patients. Because they know some stuff. This is a great reminder of a key concept in cancer caregiving and care. A doctor will only answer what you ask and you have to ask very specific questions to get very specific answers. If you say, "Will this chemo help me?" the answer might be yes. But if you ask, "Will this chemo specifically and significantly improve my life expectancy and quality of life?" the answer might be different.
Read this. Food for thought.
http://online.wsj.com/article/SB10001424052970203918304577243321242833962.html?mod=googlenews_wsj
Read this. Food for thought.
http://online.wsj.com/article/SB10001424052970203918304577243321242833962.html?mod=googlenews_wsj
Sunday, February 26, 2012
Why Women Love Bull Durham
The past couple of nights I have been watching Bull Durham. This
is the movie from 1988 with Kevin Costner playing an aging catcher in the minor
leagues. This is a movie that appears to be about baseball life with its
travails and hopes and the desperate desires of men who want to play ball for a
living. It is seemingly a men’s movie with all the swearing and ass slapping and
drinking and real life baseball lore. But no, this really is THE all time best chick
flick.
Yes, we love Kevin Costner from the first moment he arrives
in the locker room wearing his navy blazer, rumpled white shirt and the khakis
that are the perfect shade of tan with a hint of olive. He’s a manly man who in
the first 20 minutes gives the fabulous, if too artful, monologue about his
beliefs which includes, “I believe in the cock, the pussy, the small of a
woman’s back…that the novels of Susan Sontag are self-indulgent, overrated crap”,
and which ends with his belief in “long, slow, deep, soft, wet kisses that last
three days”.
Yes! You had us at “long, slow and deep”—and yes, at the
Susan Sontag critique too.
But there is a later scene that truly outs women for what
they really want.“Do you want to dance?” Sarandon asks Costner, sitting in
the kitchen late at night. He says yes, but surprises her by not dancing but
instead by sweeping all the food and dishes off the kitchen table onto the
floor. He spins Sarandon onto that now empty table and they go at it rolling
and clutching.
Oh, that’s part of it. We want a man to want us that much;
we want a man who wants to make love a second time so much that he goes for it on
the kitchen table. We do want that kind of passion in our lives. But, there is
something else in this scene that truly makes this a women’s dream come true. What most women truly desire is not what
Costner does, but what Sarandon does NOT do. As all of her dishes and the leftover
food crash onto the floor Sarandon allows herself
to be swept onto that table instead of diving for a broom, or a dish cloth or saying
to her lover, “Hold on just a second, I’ll clean this up and then meet you in
the bedroom.”
No, she is in the moment and desires this man and this sex more
than she desires a clean floor or neat kitchen. She wants the rapture of this
man and his body even with cereal and milk oozing under the fridge. And she is not
saying, “Oh God that was my mother’s china bowl.” Nope, she’s on that table fucking
her brains out.
Oh, to be that kind of woman. We assume the power is in the
man, that to be taken that way would free us. But what we see in Bull Durham is
a woman who CAN be taken. She is not a woman thinking, “When did we last wash
these sheets?” while a man is going down on her.
Oh, we do wish for a partner to love us with such sweet
abandon, but Sarandon, in Bull Durham, shows us a woman who can abandon
herself.
Thursday, February 23, 2012
Dating in CancerLand
"Dating and Desire"--Here's an article that appeared in several papers yesterday. The topic is dating when you have cancer. It's a young people's issue and a not-so-young-people's issue as well. If married sex with cancer is hard to talk about --think about this. Maybe send this link to your favorite oncologist and say, "Come on!"
Click on the link below to read more
http://www.newsobserver.com/2012/02/20/1872402/disability-and-desire-how-to-navigate.html
Click on the link below to read more
http://www.newsobserver.com/2012/02/20/1872402/disability-and-desire-how-to-navigate.html
Monday, February 20, 2012
The Cottage Weekend
This weekend we made our pilgrimage to The Cottage in Lenox. It's an annual trip and an anniversary celebration. Each year it's a measure of how we are. We have gone there in terror (year one), in joy, in exhaustion, in lust, in chemo and in total silliness (my favorite).
Each year we pack a huge bag of books, magazines, and the Kindle. And even tho the owner of the B&B feeds us well we take extra desserts (cannoli) and extra breakfast (scones). And I take my red licorice (and some red lace). Then we lock our selves in for 2 and a half days of reading and relaxing.
On the way home we hit the used bookstores in Lenox, Stockbridge and West Stockbridge for more books. This year my great find was a first edition of "Death was The Other Woman" by Linda L. Richards. How could I pass up a title like that?
Each year we pack a huge bag of books, magazines, and the Kindle. And even tho the owner of the B&B feeds us well we take extra desserts (cannoli) and extra breakfast (scones). And I take my red licorice (and some red lace). Then we lock our selves in for 2 and a half days of reading and relaxing.
On the way home we hit the used bookstores in Lenox, Stockbridge and West Stockbridge for more books. This year my great find was a first edition of "Death was The Other Woman" by Linda L. Richards. How could I pass up a title like that?
Thursday, February 16, 2012
Six Month Madness
Yesterday was John’s six-month oncology visit. As before, I
am unsettled for the few days before then very calm the day off. Prayer pays
off. This time it was blood work, the poking and prodding, the euphemistic
avoidance of talking about any bodily functions.
I feel like an old hand at this. But still I feel the
anxiety in the air in that strange waiting room. There’s a sense of who is new
and who is a regular and those that are back again.
The test results were mixed. Fine, passing fine and “we’ll
have to see”. It takes at least five days for the “cancer marker” to be
cultured and read. So now I really feel some worry. Funny name, “cancer
marker”. I imagine a cartoon thermometer that has “You Gonna Die” at the top
and gradations of life and pain along the way up. It’s really a protein test
that signals, “more tests needed” but that name: Cancer Marker.
Here’s the hard part. When we get to this place each time
(or when his cough won’t go away, or bathroom breaks take too long, or when he
is tired and my imagination goes right to Big C—Part II) I have a kind of
selfish dread that is hard to talk about.
When John’s cancer adventure began we were so caught off
guard. He was in good health, we were newly weds, life was good and the cancer
process came on so hard and fast—doctors and surgeons and hospitals and chemo
and pumps in the night and emergency buzzers going off and learning to insert
all kind of things in all kinds of places. It was fear but there was also so
much adrenaline that overran thought or process. He did it, I did it, we went
thru it. We ate all the lasagna and returned very dish. I cried a lot but
mostly I had a big-eyed stare and a Doctor Sardonicus grin stuck on my face. It
was new and we had no choices. And neither of us knew how hard it was going to
be. It was one day at a time for 15 months.
But now, looking back I am horrified by the cost and the
pain and how we both ached thru that process, so when I think, “here it comes
again” it is worse. Now I know what chemo means for colon cancer and what it
means for both people to live day and night with that FU pump and the sheer
grief and logistics of it all.
Neither of us had time to tell anyone how much pain we were
in—shared and privately. It’s taken this long to be far enough away from it to
really tell each other.
So when we go back to the oncology center I have the
terrible thought: Can I do it again?
Those are the caregivers I feel for. The new ones have a
kind of shocking adventure race to run but the ones coming back again and again
also have the shame and pain and grief of the silent question, “How can I do
this again?”
Monday, February 13, 2012
Cold Hands Warm Heart
I wake in the night and listen. The reassuring rumble tells me that the furnace is still on. It’s good news and bad. It means we have heat and there’s still oil, but at this hour I visualize the dollar bills that might just as well be fuel.
I don’t fall back to sleep easily. A glass of water, and check on the dogs, curled like Danish pastries on their pillows. I’m awake and afraid in the cold night. My fear of cold has an ancient echo. I listen for the furnace at night the way my Polish ancestors woke in their huts to check on the fire.
With only 29 days, February is the longest month, and we secretly count it down. February is to winter what Wednesday is to the workweek: If we can get through February, even snow in April won’t rock us.
In many wedding albums there is a picture of the groom carrying the bride over the threshold. That odd custom is also about staying warm. In ancient times when a woman left her father’s home and was set down on the hearth in her new house she was in the most important spot in any ancient home. She literally kept the home fires burning.
Temperature is part of my own married romance. Coming to New York from Baltimore –where there is just one decent snowstorm each year--I too was set down on a new hearth. I married a man who comes from Northern Ontario where winter runs from September to May and wind chill is scoffed at. “When Canadians have 30 below, they mean it, he says; “Wind chill is for wimps”.
So to marry this tundra man I had to learn to dress for cold. To get me from the Inner Harbor to the frozen Hudson he plied me with jackets and sweaters, scarves and gloves, even a hat with earflaps.
But physical acclimation is real. That first winter, living in upstate New York, I thought I’d die. My boots were good below freezing but my fingers could barely tie them. Each year it gets easier. Now I complain about the cold, but no longer imagine myself part of the Donner party.
But there is also an emotional acclimation to cold. A quote of Camus is taped inside the cabinet where I get my coffee mug each morning. It says: “In the depth of winter, I finally learned that within me there lay an invincible summer.” Some days that tells me that I have enough beach memories to cling to on the slippery slope of February, and other days it is the word “invincible” that reminds me that living cold does indeed build character.
But having a warm house is important. I can’t swear that my first marriage ended solely over the thermostat setting, but for years I never went on a second date with a man whose response to my “I’m cold”, was “Put on a sweater”. Now I’m married to a man who knows that cold hands do not mean a warm heart, and that a big oil bill is better than roses. But surprisingly, I’ve grown too. I am willing, in this new life and climate, to go and put on that cost-saving sweater.
The word comfortable did not originally refer to being contented. It’s Latin root, confortare, means to strengthen. Hence it’s use in theology: the Holy Spirit is Comforter; not to make us comfy, but to make us strong. This then is February’s task. We may not be warm but we are indeed comforted; we are strong and we are counting the days.
Saturday, February 11, 2012
Sex is Good
Well, that's the message of the article in today's Times Union by health advocate Lynda Shrager. In this perfect Valentine's Day piece she makes a strong case for more sex for everybody. What's never quite clear in stories like this tho is whether "sex twice a week" means orgasm twice a week. We know that you can have a lot of sex with out both partners having an orgasm. So does the one who comes get all the health benefits?
And if that's true do the benefits accrue if your "partner" runs on batteries? That's the problem with euphemism; we are left in the dark even when the lights are on. But to be on the safe--and healthy--side go for the O on Valentine's Day.
Here's the link to Lynda's column. Her health advice is always great so do bookmark this one:
http://www.timesunion.com/living/article/It-feels-good-and-does-you-good-3247062.php
And if that's true do the benefits accrue if your "partner" runs on batteries? That's the problem with euphemism; we are left in the dark even when the lights are on. But to be on the safe--and healthy--side go for the O on Valentine's Day.
Here's the link to Lynda's column. Her health advice is always great so do bookmark this one:
http://www.timesunion.com/living/article/It-feels-good-and-does-you-good-3247062.php
Friday, February 10, 2012
Free Legal Services at Albany Health Law clinic
Here is another regional resource for individuals and families dealing with cancer. Experienced health advocates and second and third year law students staff the Health Law Clinic at Albany Law School. They can advise and guide you on issues that range from disability rights, employment law concerns, securing benefits and the rights and supports for caregivers.
The services are free.
For more information call: 518-445-2328 or look at the Albany Law School website: www.albanylaw.edu
Tuesday, February 7, 2012
Cancer and Careers Conference
As a cancer patient, survivor or cancer caregiver you know the struggle of keeping a job, balancing treatment and work responsibilities, juggling caregiving and work responsibilities and dealing with bosses, coworkers and yes, the doing the work itself. "Cancer&Careers" is a national organization that is a resource for patients, caregivers, family members and employers.
The National Cancer and Careers Conference is June 22 in New York City. The conference is free, there are travel scholarships and it's one day jam packed with information and support.
Here's the link: Consider sharing this with your boss, coworkers and your Human Resources Department.
http://www.cancerandcareers.org/en/community/events/conference
The National Cancer and Careers Conference is June 22 in New York City. The conference is free, there are travel scholarships and it's one day jam packed with information and support.
Here's the link: Consider sharing this with your boss, coworkers and your Human Resources Department.
http://www.cancerandcareers.org/en/community/events/conference
Sunday, February 5, 2012
Young Adult Cancer in Fiction
Two new novels with stories themed around cancer are new releases. What's remarkable is that they are both very good novels apart from the cancer storyline and from the fact that both are published in the Young Adult category.
Likely the publishers booked them as "YA" books because the main characters are teenagers but be assured these are powerful, well-written and emotionally mature books. Yes, they are great reads for folks you know 13 to 18 who have a friend with cancer or who want a serious, non-vampire read. But they are also for those of us who love a good novel, with complex characters, engaging narrator, and great writing.
They are:
"The Fault in Our Stars" by John Green and
"The Probability of Miracles" by Wendy Wunder.
Add these to your library list or get them at your local independent bookstore--in our Albany Capital Region that is The BookHouse at Stuyvesant Plaza in Albany or Market Block Books in Troy.
Likely the publishers booked them as "YA" books because the main characters are teenagers but be assured these are powerful, well-written and emotionally mature books. Yes, they are great reads for folks you know 13 to 18 who have a friend with cancer or who want a serious, non-vampire read. But they are also for those of us who love a good novel, with complex characters, engaging narrator, and great writing.
They are:
"The Fault in Our Stars" by John Green and
"The Probability of Miracles" by Wendy Wunder.
Add these to your library list or get them at your local independent bookstore--in our Albany Capital Region that is The BookHouse at Stuyvesant Plaza in Albany or Market Block Books in Troy.
Thursday, February 2, 2012
Event for The Capital Region Hope Club Friday February 10th
HopeClub of the Capital Region & The New York State Capital District Alliance for Women in Media invite you to the 2012 Benefit Gala.
LIVE: HAIR OF THE DOG
Tickets are $40
Please RSVP by Wednesday, February 8th to:
www.cancer.org/hopeclub OR call Mary at 518-454-4006
Complimentary Champagne Toast & Wine Tasting
Hearty Hors d'oeuvres
Carving station, Pasta station
Dessert, coffee/tea, cash bar
Sensational Silent Auction!
*Cash, Check or Credit Card accepted. Business Attire. Walk-ins are welcome!
LIVE: HAIR OF THE DOG
Tickets are $40
Please RSVP by Wednesday, February 8th to:
www.cancer.org/hopeclub OR call Mary at 518-454-4006
Complimentary Champagne Toast & Wine Tasting
Hearty Hors d'oeuvres
Carving station, Pasta station
Dessert, coffee/tea, cash bar
Sensational Silent Auction!
*Cash, Check or Credit Card accepted. Business Attire. Walk-ins are welcome!
Sunday, January 29, 2012
How We Survived Prostate Cancer
I mentioned Victoria Hallerman’s book, “How We Survived Prostate Cancer”, last week. It jumped off the shelf into my hands at the local bookstore because of the word “We” in the title.
She had me at “we”. Victoria is a wife, and her husband has prostate cancer and the book is about both of them as they go through this experience. That’s been something I care deeply about and why I write and speak about relationships and cancer. I see how often spouses and partners are left out of the equation by the medical community. Yes, there’s that obsequious nod to caregivers in the magazines and by professionals –but we’ll know they mean it when caregiver services are part of the deductible.
Hallerman’s book is terrific. The subtitle also tells you a lot: “What we did and what we should have done.” So as you can guess, she tells their mistakes, missteps and shares a lot about the hard parts they had to go through. And she writes a lot about their sexual experiences and sexual consequences and the cost and gain to their marriage—and she does not sugar coat it. A man with no testosterone and extra estrogen is not sexy, and when he is also incontinent, grouchy and physically ill—for a long time—it’s not a made for TV movie romance.
But that is what makes me love this book and Hallerman. I know that cancer and caregiving are not made for TV movies. Those movies hurt more than they help. But truth, honesty, humor and woman-to-woman talking have always helped me.
Yes, the book is about Hallerman’s experience with her husband’s prostate cancer but this book and its ideas translate immediately into any other cancer diagnosis. It’s about what they did and didn’t do as a couple and the medical and emotional costs of those choices. This book will be valuable if your cancer is breast or brain or lung or colon. If you have a partner in the battle read this book.
Coaches Verus Cancer
Coaches Versus Cancer basketball tournament today in Albany. At the Times Union Center. Games all day..entertainment, food, cancer services info and expo....Yes-- a fundraiser for cancer. More details at the link below:
www.capitalcoachesvscancer.org/basketball-events-highschool.cfm
www.capitalcoachesvscancer.org/basketball-events-highschool.cfm
Friday, January 27, 2012
50/50
Maybe like me you put off watching the 2011 comedy/drama 50/50. I didn’t watch it for a year. I assumed it was either a sappy, tearjerker about cancer, or a gross, expletive-deleted, Seth Rogan 20-somehting boy story. I didn’t know, and didn’t realize, it was both.
Watched it last night and we laughed and cried. Yeah, John too. I am glad I didn’t see this at the movies with friends though. Not because the cancer scenes cut so close to home but because there is one boy-to-boy discussion of girl friends and sex acts that made me blush. If I saw this movie on a first date I’d leave the theater in sunglasses and go right home.
But, we’re not dating, we’re married, and we've done that sex act many times, and I’m laughing as I type this, Ok it’s funny.
And yes, Seth Rogan is mostly a pig but, a pig with a heart for friendship and some insight into how guy pals talk and fight and love each other. Yeah, the movie is a love story and –spoiler alert—the love object is not Anna Kendrick.
I would put 50/50 in my top three cancer movies. Check it out. But not on a first date.
Tips....so to speak...For Prostate Cancer and Sex
I could not pass this up. The link below is a resource for couples dealing with prostate cancer. And, yeah, its about sex in CancerLand. I just love the directness and reality of these suggestions. I found this on the website of writer Victoria Hallerman, author of "How We Survived Prostate Cancer". Yeah, she says "we"...thats what caught my eye when I was scanning the cancer section of the local bookstore.
I love her book, and will say more about that tomorrow. For today check out the tips on the link below:
http://www.phoenix5.org/companions/10Pointers.html
I love her book, and will say more about that tomorrow. For today check out the tips on the link below:
http://www.phoenix5.org/companions/10Pointers.html
Wednesday, January 25, 2012
What You Believe In...
A quote that I love goes like this: "What you believe in must be bigger than what you are afraid of." I heard a woman named Kim Klein say that in a conference on fund raising many years ago. She was telling a story about how she overcame her fear of solicitation--asking powerful people for money. She said that one day in a fit of terror, about to approach a big CEO, it hit her that she really did believe in the women she was trying to help at her DV shelter, so that had to be bigger than her fear. And her fear decreased that day.
I have applied that quote in my life many times: at work, in relationships, in social settings and now I'm thinking about health and wellness and cancer. Do I believe in God? Goodness? the power of the body? the balance of the universe? Ok, can I remember that when I am afraid?
This week a friend who knows I love that quote pointed it out to me again. I have been wrestling with my passion about caregiving and this cancer advocacy work--do I dare put myself out there? really step up to the plate, and the microphone, with Love in the Time of Cancer? And my friend Martha said, "Diane, what you believe in has to be bigger than what you are afraid of."
My own advice to others hiding in plain sight. That makes me believe in God. And his sense of humor.
I have applied that quote in my life many times: at work, in relationships, in social settings and now I'm thinking about health and wellness and cancer. Do I believe in God? Goodness? the power of the body? the balance of the universe? Ok, can I remember that when I am afraid?
This week a friend who knows I love that quote pointed it out to me again. I have been wrestling with my passion about caregiving and this cancer advocacy work--do I dare put myself out there? really step up to the plate, and the microphone, with Love in the Time of Cancer? And my friend Martha said, "Diane, what you believe in has to be bigger than what you are afraid of."
My own advice to others hiding in plain sight. That makes me believe in God. And his sense of humor.
Saturday, January 21, 2012
When I am the Patient
Oh humility; oh arrogance. This week I am the patient. Eye surgery this week. And my first inclination is to tell you it's no big deal. There, right there, it begins. The comparison, "Well, it's not cancer"; "Well, it's not brain surgery". Oh Jeez--it's eye surgery--my eye balls--my vision.
Here's what I'm learning: It's so hard to sit still. I'm supposed to rest, take it easy, no stress. Well, this has totally outed me as a workaholic if I had any doubts. I'm also supposed to use four different medicines four times a day and my first reaction is: "What a hassle, must be someway I can condense this?" No, I have not been to medical school but that does not stop me from thinking those instructions are for other people, surely not me. That is a form of arrogance, not to mention stupidity. Did I mention these are my eyes, my vision, I'm playing with?
And for good measure lets add vanity to the humbling mix. I cannot wear makeup for a week and I cannot take a shower for a week and I have to wear big, dorky dark glasses at all times even at night in bed. Actually with the no make-up rule and the no shower rule I'm glad for the glasses.
And oh yeah, I'm not supposed to use the computer too much. But, hey, you can see how well that is going. :)
Here's what I'm learning: It's so hard to sit still. I'm supposed to rest, take it easy, no stress. Well, this has totally outed me as a workaholic if I had any doubts. I'm also supposed to use four different medicines four times a day and my first reaction is: "What a hassle, must be someway I can condense this?" No, I have not been to medical school but that does not stop me from thinking those instructions are for other people, surely not me. That is a form of arrogance, not to mention stupidity. Did I mention these are my eyes, my vision, I'm playing with?
And for good measure lets add vanity to the humbling mix. I cannot wear makeup for a week and I cannot take a shower for a week and I have to wear big, dorky dark glasses at all times even at night in bed. Actually with the no make-up rule and the no shower rule I'm glad for the glasses.
And oh yeah, I'm not supposed to use the computer too much. But, hey, you can see how well that is going. :)
Tuesday, January 17, 2012
The Swerve and Pleasure
I am reading the new book, “The Swerve” by Stephen Greenblatt. “Swerve” won the National Book Award in 2011. Its subtitle is “how the world became modern.” It is terrific and its about the Renaissance and intellectual history and theological history and intrigues of ideas and books. Greenblatt’s earlier book, “Will in the World—How Shakespeare Became Shakespeare” was also brilliant and a finalist for a Pulitzer.
Now I just love this kind of chewy, rich, idea packed reading and I love to grab as much history as I missed in my earlier education—I was in the girl’s room smoking for many history classes I guess—or passing notes about cute boys.
But the reason I want to mention “The Swerve” here is not as a book review—though yes—grab this book. But this book belongs in a story about sex and cancer because Greenblatt explains with a clarity I have never read or heard—why we are so body-denying in our culture. In telling this story of how our thought changed and books were embraced and denied and rediscovered and hidden again he describes the church and intellectual shifts that took away belief in the body as a good thing and in God as a giver of pleasure and how that became disastrously distorted and left us—Western Civilization and Christians in particular --ashamed of our bodies and pain seeking rather than pleasure seeking.
All of that has contributed to shame about bodies, discomfort with talking about our need for and right to pleasure, and bonus for us in Cancer Land: a faint underground belief that illness is punishment. What a set up and what an intellectual and cultural crime.
Saturday, January 14, 2012
Gong Show
I am open to all kinds of healing and it's always my hope that I can find healthcare practitioners who respect and integrate Eastern and Western practices. Years ago I studied Reiki and have used it-quite irregularly--to help myself and others. It's one of those things that you can believe or not because its all to the good, especially when combined with good healthcare practices.
Last night I tried something new called a Gong Bath. Nope, no getting naked or cold. Gong Bath is done with a group of people who lay or sit comfortably while being "bathed" in the sounds of huge (really huge) Japanese and Tibetan gongs. The lights are low, the sounds are not loud at all but you can feel the vibrations going through your body. There was a very brief intro--kind of like a verbal meditation instruction--Relax. Breathe. It was very comfortable and very comforting.
We stayed with the gongs "bathing" us for an hour and then some more brief verbal instructions to return to the present and the now. At the close the Gong Master explained that the gongs--there were 8 or ten of them--were tuned to the chakras of the body/mind and that the vibrations and sensations are intended to heal and align the chakras.
Even if you tend to roll your eyes at this kind of thing it's worth checking out. An hour after work on a Friday night, a cozy room, loving vibrations soothing to the body and mind--that was a Happy Hour.
Last night I tried something new called a Gong Bath. Nope, no getting naked or cold. Gong Bath is done with a group of people who lay or sit comfortably while being "bathed" in the sounds of huge (really huge) Japanese and Tibetan gongs. The lights are low, the sounds are not loud at all but you can feel the vibrations going through your body. There was a very brief intro--kind of like a verbal meditation instruction--Relax. Breathe. It was very comfortable and very comforting.
We stayed with the gongs "bathing" us for an hour and then some more brief verbal instructions to return to the present and the now. At the close the Gong Master explained that the gongs--there were 8 or ten of them--were tuned to the chakras of the body/mind and that the vibrations and sensations are intended to heal and align the chakras.
Even if you tend to roll your eyes at this kind of thing it's worth checking out. An hour after work on a Friday night, a cozy room, loving vibrations soothing to the body and mind--that was a Happy Hour.
Tuesday, January 10, 2012
Cancer in the Movies
Not so much cancer on TV but we do have some cancer in the movies. They are few and far between but we can find some. Here’s a list of my picks for top cancer flicks:
1. The Barbarian Invasions
3. Terms of Endearment
4. 50/50
5. Wit
6. Sweet November
7. My Life Without Me
8. Erin Brockovitch
9. The Bucket List
10 Stepmom
What movies am I missing?
Saturday, January 7, 2012
Cancer on TV
If we know that one in 5 people has cancer and that cancer touches every family, and that most Americans watch more than 20 hours of TV a week--how come we don't see much cancer on TV?
Doesn't it seem that there should be cancer references and cancer experiences represented on regular TV? Yes, we have the fabulous ShowTime "The Big C" with Laura Linney but what about cancer in Modern Family and South Park and How I Met Your Mother and The Family Guy?
At any moment each of us knows someone with cancer--family member, extended family member, co-worker, in a friend's family etc. Someone has a diagnosis or is going thru treatment. Someone is dying or surviving. So where is that in our TV lives? Shouldn't there at least be a minor character with cancer? a mention of taking a casserole (yes, lasagna) to someone's home? Someone bald or in a chemo-scarf?
Cancer is in our lives, so how about our TV lives?
Doesn't it seem that there should be cancer references and cancer experiences represented on regular TV? Yes, we have the fabulous ShowTime "The Big C" with Laura Linney but what about cancer in Modern Family and South Park and How I Met Your Mother and The Family Guy?
At any moment each of us knows someone with cancer--family member, extended family member, co-worker, in a friend's family etc. Someone has a diagnosis or is going thru treatment. Someone is dying or surviving. So where is that in our TV lives? Shouldn't there at least be a minor character with cancer? a mention of taking a casserole (yes, lasagna) to someone's home? Someone bald or in a chemo-scarf?
Cancer is in our lives, so how about our TV lives?
Friday, January 6, 2012
The Patient's Checklist
This week I read a review copy of a new and very handy book called, "The Patient's Checklist". While ostensibly a book for patients to take with them to the hospital--this is actually a great book for family caregivers and advocates. Elizabeth Baily had the experience of managing her fathers care--some complicated care--and this book grew from her experience.
It is, in fact, filled with checklists to use before going to the hospital and at the hospital and after. Lots of methods for keeping track of who's who and what's what and what comes next.
This is a book that everyone over 50 should have as they care for their parents and siblings and to pass on to their kids who in turn will be taking care of them.
It is, in fact, filled with checklists to use before going to the hospital and at the hospital and after. Lots of methods for keeping track of who's who and what's what and what comes next.
This is a book that everyone over 50 should have as they care for their parents and siblings and to pass on to their kids who in turn will be taking care of them.
Sunday, January 1, 2012
Hooray the Holidays are Over
Countdown to our annual "Hooray the Holidays are Over!" party. Guests in one hour. I love this party because we only invite people we like--no "have to" guests. And we make foods we like and people bring unexpected treats...no booze unless it goes home with the bringer--so a really nice time. But this hour before I am always nervous--the start of a party feels stressful--that pause before it really clicks and people talk to each other.
Each year we get better at doing this party--easier with each other, easier with expectations, easier with what happens. My favorite part is seeing strangers meet or discovering that they have or want a connection with each other.
A new year to be in love, wickedly sexy, full of health and at peace with God.
Each year we get better at doing this party--easier with each other, easier with expectations, easier with what happens. My favorite part is seeing strangers meet or discovering that they have or want a connection with each other.
A new year to be in love, wickedly sexy, full of health and at peace with God.
Friday, December 30, 2011
Alas...a Writer
"When a writer is born into a family the family is finished."
--Czeslaw Milosz
--Czeslaw Milosz
Monday, December 26, 2011
Kids and Christmas and Thanks
How many people, for how many years, said "Give time time" when we talked about John's kids? And it was true. It has been hard for me to give them their time and to give up my resentment that they stayed away when he was so sick. I had so much fear for him--and for them--that they would miscalculate their anger and his diagnosis--and miss the last years of their father's life.
For Christmas they were with us. It took teensy baby steps and lots of counsel from people smarter than me in these matters but the day came. Time took time. That's the hardest part of it, isn't it? And much harder when you feel there may never be enough time. In Cancer Land time is our hope as well as our enemy.
The best help came from someone much younger--a good friend whose parents have both been remarried twice. She had many years being "the kid". Her wise counsel to me was this, "Never say we." She was right. She told me, "I always found it easier to meet my mother/father's boy/girl friends as people rather than as future step parents...when you talk to them pretend John is not even in the room.--and never say 'we'." Her wisdom came from painful experience and we are the beneficiaries.
It's my hope that this blog can benefit you too--that our experiences and our pain can be transformed to some good.
For Christmas they were with us. It took teensy baby steps and lots of counsel from people smarter than me in these matters but the day came. Time took time. That's the hardest part of it, isn't it? And much harder when you feel there may never be enough time. In Cancer Land time is our hope as well as our enemy.
The best help came from someone much younger--a good friend whose parents have both been remarried twice. She had many years being "the kid". Her wise counsel to me was this, "Never say we." She was right. She told me, "I always found it easier to meet my mother/father's boy/girl friends as people rather than as future step parents...when you talk to them pretend John is not even in the room.--and never say 'we'." Her wisdom came from painful experience and we are the beneficiaries.
It's my hope that this blog can benefit you too--that our experiences and our pain can be transformed to some good.
Wednesday, December 21, 2011
Oh Christmas Tree
I am grateful for another Christmas. I am grateful for Christmas without chemo. I am grateful for Christmas with most of the family speaking to each other and even for those not speaking there is a kind of benign detachment. I am grateful that we are both well and that we can put off all medical appointments until the New Year.
Gifts are purchased. Cards written. Invitations out for our annual New Years Day party. Tomorrow I’ll work a long day of Adopt-A-Family—getting gifts to others—and with much less resentment this year—and much less drama. Incredible gratitude for that.
Friday grocery shopping for the Christmas dinner with our nearby family. Saturday church and singing carols. But tonight—oh tonight—
The Christmas tree!
Monday, December 19, 2011
Bonnie Prudden
In my early 20’s I was a dance student and worked part-time teaching dance to kids and adults to pay my way. I worked a lot at the YWCA in Pittsburgh and when I had time I took the other classes they offered. Several of the fitness teachers were crazy about a woman named Bonnie Prudden who had a new style of exercise. We all practiced it and we exercised to her records. Yes—we exercised to records—33rpm—and listed to the instructions and looked at photos on the album cover. Seems crazy now that we have videos, cd’s and YouTube exercise teachers.
But Bonnie was something else. Her exercise was aerobic and dancelike and strength building and she was funny! She talked about women’s real bodies and real lives as she taught.
The YWCA teachers—all older --invited me along on a trip to Connecticut to spend a week with Miss Prudden. We trained with her and were exposed to a new course she was developing called “Sexercise” so radical and amazing. Again, she talked about real life, real women’s bodies and real women’s sex life—and the impact on marriage. My eyes were big!
On the way home with women who were “older” 40’s and 50’s I heard those women talk about their marriages and sex lives. Again eye opening. I’m sure that those “gym teachers” and Bonnie Prudden reinforced my belief in sex and sexy marriages as healthy, fun and essential to happiness.
Bonnie Prudden died on December 11th at age 97. Her New York Times obituary says she was still exercising every day.
Saturday, December 17, 2011
Looking for Signs
I laugh now at how many times in my life I have prayed for a sign to let me know if I was on the right path or for help in making a decision. In very difficult moments I have begged for skywriting from the universe and just last week I told a friend that I’m still waiting for an envelope from God with my name on it. Maybe I watched too many episodes of Mission Impossible as a kid but part of me wants instructions that spell out very clearly what I should do with my life.
I know God doesn’t work that way, but I also know I’m not alone in wanting him to. Some people flip coins or watch birds or follow the crude metals index. Others keep psychics in business and ensure that books on spiritual guidance top the bestseller lists. I’ve tried it all and I’ve been to Tarot readers, thrown the I Ching and I have a well-worn set of Rune stones.
Years ago when people close to me were dying and I was tearfully demanding to know God’s will, a friend who was more experienced in grief chastised and reassured me by saying, “Gods will is what is”. The simplicity and profundity of that statement silenced me for a while.
But I come back again to wanting to know, and often it’s at this time of year and there’s a good reason. As the winter begins and we are faced with dark and cold there is a pull from deep in our bones that drive us to seek light and answers. The need for light at this time of year is so great that we adapted culturally to give it to ourselves. We have Solstice and now Hanukkah and then Christmas, all great stories about finding light.
The part of the Christmas story that has always meant the most to me is that of the three wise men making their journey, traveling on a hunch, a belief, and their deep wanting. They had studied the sky for years and then they saw their sign.
In his poem, Journey of the Magi T.S. Eliot wrote: “At the end we preferred to travel all night, sleeping in snatches, with the voices singing in our ears, that this was all folly.”
Of course that is the problem with star following. You just don’t know. We see this most painfully now looking at the news. Stories of young men and women as heroes in Iraq and others, the same age who commit terrible crimes. All of them following their stars. But how do you know until you show up whether there’s going to be a baby or a bullet?
So the wise men’s lesson is all about faith: We do our best, we study, we consult with others, we try to be wise men and women, but we have to get on our camels, bring our gifts and hope we are doing good.
This is solstice week and these are our darkest days. We cope in the most ancient of ways. We go toward the light--to neon and the mall, to crowds of shoppers, even as our ancient relatives were drawn to stars and the fire.
Through all of this we’ll read our horoscopes. We’ll hope our loved ones will be spared the only thing that no one can be, which is death. We’ll look at the night sky and try to believe. No wonder a baby born in a barn is a great story. No wonder we look for signs.
I know God doesn’t work that way, but I also know I’m not alone in wanting him to. Some people flip coins or watch birds or follow the crude metals index. Others keep psychics in business and ensure that books on spiritual guidance top the bestseller lists. I’ve tried it all and I’ve been to Tarot readers, thrown the I Ching and I have a well-worn set of Rune stones.
Years ago when people close to me were dying and I was tearfully demanding to know God’s will, a friend who was more experienced in grief chastised and reassured me by saying, “Gods will is what is”. The simplicity and profundity of that statement silenced me for a while.
But I come back again to wanting to know, and often it’s at this time of year and there’s a good reason. As the winter begins and we are faced with dark and cold there is a pull from deep in our bones that drive us to seek light and answers. The need for light at this time of year is so great that we adapted culturally to give it to ourselves. We have Solstice and now Hanukkah and then Christmas, all great stories about finding light.
The part of the Christmas story that has always meant the most to me is that of the three wise men making their journey, traveling on a hunch, a belief, and their deep wanting. They had studied the sky for years and then they saw their sign.
In his poem, Journey of the Magi T.S. Eliot wrote: “At the end we preferred to travel all night, sleeping in snatches, with the voices singing in our ears, that this was all folly.”
Of course that is the problem with star following. You just don’t know. We see this most painfully now looking at the news. Stories of young men and women as heroes in Iraq and others, the same age who commit terrible crimes. All of them following their stars. But how do you know until you show up whether there’s going to be a baby or a bullet?
So the wise men’s lesson is all about faith: We do our best, we study, we consult with others, we try to be wise men and women, but we have to get on our camels, bring our gifts and hope we are doing good.
This is solstice week and these are our darkest days. We cope in the most ancient of ways. We go toward the light--to neon and the mall, to crowds of shoppers, even as our ancient relatives were drawn to stars and the fire.
Through all of this we’ll read our horoscopes. We’ll hope our loved ones will be spared the only thing that no one can be, which is death. We’ll look at the night sky and try to believe. No wonder a baby born in a barn is a great story. No wonder we look for signs.
Wednesday, December 14, 2011
Ways to Go
If you have dealt with cancer, as patient or caregiver, you know the questions from friends and acquaintances: “Is there a family history?” “Did she smoke?” “Wasn’t he overweight?” “I think he had a lot of anger?”
Translation: There must be some reason that you have cancer and I won’t get it. However, we have numbers to help us sort the crowd. And to remember that cancer is not a moral issue or a character weakness or a personal failing. Maybe this also helps if you are asking, “Why Me?” In truth, why not you?
From the National Safety Council we have statistics that reveal what holds the greatest chance of ending a life. Here are some of the lifetime probabilities of a US resident dying. These are expressed as odds of dying:
Heart disease: 1 in 5
Cancer: 1 in 7
Stroke: 1 in 24
Falling: 1 in 128
Pedestrian accident: 1 in 626
Drowning: 1 in 1,008
Airplane accident: 1 in 5,051
Lightening: 1 in 79,000
So this tells us that cancer is very common with little discrimination and so shouldn’t we all be learning more? It also tells us that heart disease should be our biggest worry, so swap out those pink ribbons for red ones. But the biggest thing we need to be facing is our own mortality. The total odds of dying, of any cause, are 1 in 1. 100% of us will die. You’d think, given that, that we’d get a little bit better at dealing with it.
Translation: There must be some reason that you have cancer and I won’t get it. However, we have numbers to help us sort the crowd. And to remember that cancer is not a moral issue or a character weakness or a personal failing. Maybe this also helps if you are asking, “Why Me?” In truth, why not you?
From the National Safety Council we have statistics that reveal what holds the greatest chance of ending a life. Here are some of the lifetime probabilities of a US resident dying. These are expressed as odds of dying:
Heart disease: 1 in 5
Cancer: 1 in 7
Stroke: 1 in 24
Falling: 1 in 128
Pedestrian accident: 1 in 626
Drowning: 1 in 1,008
Airplane accident: 1 in 5,051
Lightening: 1 in 79,000
So this tells us that cancer is very common with little discrimination and so shouldn’t we all be learning more? It also tells us that heart disease should be our biggest worry, so swap out those pink ribbons for red ones. But the biggest thing we need to be facing is our own mortality. The total odds of dying, of any cause, are 1 in 1. 100% of us will die. You’d think, given that, that we’d get a little bit better at dealing with it.
Sunday, December 11, 2011
Cancer in Comics
Graphic novels—also called “comics” are becoming more popular with readers of all ages. Not at all cartoon, they can be serious, funny, educational and inspiring. The format of comics adds new dimension to a story by combing body, face, dialog and set, and by using shape and graphic design to maximum effect.
There are two graphic novels that I love:
Marisa Acocella’s “Cancer Vixen” came out two years ago and tells the story of Marisa’s breast cancer diagnosis and relationship with her new fiancé as they go through a fashionable Manhattan breast cancer story. If there is a girly-girl breast cancer story this is it.
This week I read “Cancer Made Me a Shallower Person” by Miriam Engelberg. I am highly recommending this book. It was published in 2006 and I regret not having this on the CancerLand Reading list before this.
Engelberg is a cartoonist living in San Francisco and her book is a memoir created by a series of comics that take us through her cancer journey—first diagnosis, treatments, family, workplace, second diagnosis, more treatments and best of all her internal reactions. Now, this may seem so crazy but this is a really funny and inspiring book for anyone to read. At the center of the story is the way many of us react to difficult things. For Engelberg it’s cancer, for you maybe it’s divorce, aging, trouble with kids etc.
Even crazier, this book is so funny while being serious, that I think—call me crazy—this could be a holiday gift for someone with cancer. Anyone in CancerLand—caregivers too, will say “yep, yep, yep”, as they follow Engelberg’s funny drawings.
There are two graphic novels that I love:
Marisa Acocella’s “Cancer Vixen” came out two years ago and tells the story of Marisa’s breast cancer diagnosis and relationship with her new fiancé as they go through a fashionable Manhattan breast cancer story. If there is a girly-girl breast cancer story this is it.
This week I read “Cancer Made Me a Shallower Person” by Miriam Engelberg. I am highly recommending this book. It was published in 2006 and I regret not having this on the CancerLand Reading list before this.
Engelberg is a cartoonist living in San Francisco and her book is a memoir created by a series of comics that take us through her cancer journey—first diagnosis, treatments, family, workplace, second diagnosis, more treatments and best of all her internal reactions. Now, this may seem so crazy but this is a really funny and inspiring book for anyone to read. At the center of the story is the way many of us react to difficult things. For Engelberg it’s cancer, for you maybe it’s divorce, aging, trouble with kids etc.
Even crazier, this book is so funny while being serious, that I think—call me crazy—this could be a holiday gift for someone with cancer. Anyone in CancerLand—caregivers too, will say “yep, yep, yep”, as they follow Engelberg’s funny drawings.
Thursday, December 8, 2011
Helping Hands for the Holidays
If you are a family caregiver you know --or are learning --that you can ask for help with many basics. Most family and friends think first to offer a meal and the casseroles will arrive but you can ask for --and they can help with--so much more. (Besides lasanga is only good the first 20 times). You also know that you can ask for rides, laundry, pick ups at the pharmacy, grocery store and my favorite, the dry cleaner--if you are a working caregiver please let a friend be in charge of your dry cleaning. Some folks will help with light housekeeping or baby sitting, maybe doing homework or fun activities with children.
But the holidays are here: Hanukah and Christmas are right around the corner. No one expects you to entertain or be super celebratory--but you don't want to miss the holidays entirely. Hence the big stress add-on. Chemo at Christmas will blow every caregiver higher than the first star in the East with stress.
So think about this: You can ask family and friends to help with Christmas tasks too: shopping (hand over the list of basic gifts-- the ones you can name by make or brand), cookie making, gift wrapping, set up the tree, decorate, and going to the post office. I know that everyone is busy but all of your helpers are going to the mall, the card store, the hardware store and the post office anyway. Let them do some of it.
You'll want to keep some holiday tasks for yourself--you'll feel better that way--but you can shop for the closest loved ones (shop online) and you can put the star on the tree or light the candles each night. But you don't have to do it all--or feel bad if you don't. The helpers will really, really feel so much better about themselves if they help you at this time of year--so give them the gift of helping you.
But the holidays are here: Hanukah and Christmas are right around the corner. No one expects you to entertain or be super celebratory--but you don't want to miss the holidays entirely. Hence the big stress add-on. Chemo at Christmas will blow every caregiver higher than the first star in the East with stress.
So think about this: You can ask family and friends to help with Christmas tasks too: shopping (hand over the list of basic gifts-- the ones you can name by make or brand), cookie making, gift wrapping, set up the tree, decorate, and going to the post office. I know that everyone is busy but all of your helpers are going to the mall, the card store, the hardware store and the post office anyway. Let them do some of it.
You'll want to keep some holiday tasks for yourself--you'll feel better that way--but you can shop for the closest loved ones (shop online) and you can put the star on the tree or light the candles each night. But you don't have to do it all--or feel bad if you don't. The helpers will really, really feel so much better about themselves if they help you at this time of year--so give them the gift of helping you.
Tuesday, December 6, 2011
Living with Uncertainty
Today at the To Life! Women’s Health Conference I heard a great speaker: Rachel Sperry, MSW from the Devereux Center for Children’s Resilience. Rachel is a cancer survivor—diagnosed at 33 when she was a newlywed and in the thick of a new career. She talked about learning that although it feels like the bottom falls out when we are diagnosed with cancer, “there really isn’t a bottom there anyway”; we are always—even when well—living with uncertainty.
Her talk was inspiring and filled with insight and humor, and practical steps to build resilience in adults—with or without cancer. These are the ingredients for a resilience recipe:
Relationships--friends and/or family
Have a hobby or hobbies
Know you are loveable—if you don’t get the help and do the work to change that.
Have a mentor or guide—in life as well as in work
Take initiative—act on the world rather than let the world act on you. Speak up, say No; say Yes.
Develop or recognize healthy self-control—know your limits; set limits for yourself; learn how to calm yourself.
That’s just a tiny bit of Rachel's wisdom. Keep an eye out for Rachel Sperry speaking or presenting. I’ll certainly keep her events posted here for all of us.
Her talk was inspiring and filled with insight and humor, and practical steps to build resilience in adults—with or without cancer. These are the ingredients for a resilience recipe:
Relationships--friends and/or family
Have a hobby or hobbies
Know you are loveable—if you don’t get the help and do the work to change that.
Have a mentor or guide—in life as well as in work
Take initiative—act on the world rather than let the world act on you. Speak up, say No; say Yes.
Develop or recognize healthy self-control—know your limits; set limits for yourself; learn how to calm yourself.
That’s just a tiny bit of Rachel's wisdom. Keep an eye out for Rachel Sperry speaking or presenting. I’ll certainly keep her events posted here for all of us.
Sunday, December 4, 2011
The Bridge of San Luis Rey
Most of us know Thornton Wilder from the play, “Our Town”—every town and every high school does “Our Town” sometime and it’s worthy. I keep an excerpt from Emily’s after death speech on my wall at work—to remember.
But here is a bit more Thornton Wilder that is also for us in Cancer Land. This is the last paragraph from his novel, “The Bridge of San Luis Rey:
“We ourselves shall be loved and then forgotten. But the love will have been enough; all those impulses of love return to the love that made them. Even memory is not necessary for love. There is a land of the living and a land of the dead and the bridge is love, the only survival, the only meaning.”
But here is a bit more Thornton Wilder that is also for us in Cancer Land. This is the last paragraph from his novel, “The Bridge of San Luis Rey:
“We ourselves shall be loved and then forgotten. But the love will have been enough; all those impulses of love return to the love that made them. Even memory is not necessary for love. There is a land of the living and a land of the dead and the bridge is love, the only survival, the only meaning.”
Friday, December 2, 2011
Close to the Bone
I’m preparing for a cancer caregiver workshop next week and found a book that I am recommending. It’s not new but it’s new to me. The book is “Close to the Bone” by Jean Shinoda Bolen, MD. I never discovered this book, written in 1996, though her earlier book, “Goddesses in Everywoman” is a favorite of mine and my copy is bent and starred and underlined and broken from photocopying.
“Close to the Bone” is subtitled, “Life Threatening Illness and the Search for Meaning”. This book jumped out at me because the other book that I’ll use in the spiritual workshop is Victor Frankl’s, “Mans Search for Meaning”. Tragedy and meaning; suffering and meaning; cancer and meaning. The work of finding meaning or sometimes making meaning out of tragedy or suffering.
It reminds me of the quote by Fredrich Nietzsche, “He who has why to live can bear with almost any how”. But Bolen is talking about not just why to live but why suffer and the value of being brought “close to the bone” or close to our soul’s needs by an illness—our own or someone we love.
“Close to the Bone” is subtitled, “Life Threatening Illness and the Search for Meaning”. This book jumped out at me because the other book that I’ll use in the spiritual workshop is Victor Frankl’s, “Mans Search for Meaning”. Tragedy and meaning; suffering and meaning; cancer and meaning. The work of finding meaning or sometimes making meaning out of tragedy or suffering.
It reminds me of the quote by Fredrich Nietzsche, “He who has why to live can bear with almost any how”. But Bolen is talking about not just why to live but why suffer and the value of being brought “close to the bone” or close to our soul’s needs by an illness—our own or someone we love.
Sunday, November 27, 2011
Volunteer Caregivers
I’m getting ready to give a talk to a group of people who are volunteer caregivers. The organization is CareLinks and they serve Clifton Park and Saratoga County in upstate New York. The volunteers help their sick or older neighbors by giving rides, cooking, shopping and doing errands. The simple, basic, almost invisible stuff of daily life that can bring a family caregiver to their knees when they can’t do it.
I spent so many years caring for ill and dying family members that I know the gift of a friend who will grocery shop or drive to a doctor’s appointment or the one that saved my butt years ago when I was caring for two sick brothers: pick up my dry cleaning. Yes, it was that simple and singular but it saved my sanity—and probably my job.
There are now many organizations across the county that recruit, train and assign volunteer caregivers. Many come under the umbrella of “Faith in Action” groups. They are not necessarily people who are active church goers or parts of a traditional faith community but they live faith in humanity and they demonstrate their faith by giving back. In our Greater Capital Region in New York, CareLinks and Community Caregivers are two organizations that do a fabulous job of making the caregiving experience a great one for the volunteer and the family on the receiving end.
Service is gratitude in action. I am so grateful.
I spent so many years caring for ill and dying family members that I know the gift of a friend who will grocery shop or drive to a doctor’s appointment or the one that saved my butt years ago when I was caring for two sick brothers: pick up my dry cleaning. Yes, it was that simple and singular but it saved my sanity—and probably my job.
There are now many organizations across the county that recruit, train and assign volunteer caregivers. Many come under the umbrella of “Faith in Action” groups. They are not necessarily people who are active church goers or parts of a traditional faith community but they live faith in humanity and they demonstrate their faith by giving back. In our Greater Capital Region in New York, CareLinks and Community Caregivers are two organizations that do a fabulous job of making the caregiving experience a great one for the volunteer and the family on the receiving end.
Service is gratitude in action. I am so grateful.
Tuesday, November 22, 2011
Cancer is so 19th Century
Read today's New York Times article by science writer Gina Kolata about why the word "cancer" may be on its way out:
http://www.nytimes.com/2011/11/22/health/cancer-by-any-other-name-would-not-be-as-terrifying.html
http://www.nytimes.com/2011/11/22/health/cancer-by-any-other-name-would-not-be-as-terrifying.html
Sunday, November 20, 2011
Standing By
I have a cold that I can’t shake. Everyone I know has or had this cold and all my hand washing, zinc lozenges and vitamin C did not save me. But I’ve been fighting this like crazy because today I was giving a talk on my book about military mental illness and I really, really wanted to give that talk. I love talking about the men—the China Marines—that I interviewed for this book and their stories of survival. But this dam cold and constant cough--I knew I was in danger of my voice simply disappearing mid-sentence.
So I prayed--for God’s will and acceptance--and to get my ego out of the way. What mattered was that the stories got told and that the China Marines –Donald, Frenchy, Gene and Bones--lives got witnessed. Then it hit me. I could ask John to go with me, and he said yes. He would read if I couldn’t.
I loaded the podium with hot water, throat spray and cough drops and I explained to the audience that my husband might step in to read if my voice disappeared. John was standing by.
I read for the whole 55 minutes. I told the stories of men who served and survived and thrived—men who were my teachers. And after I finished reading I opened my mouth to say “thank you” and my voice was gone. It was a gift to be able to give the talk and John was beside me to take over.
So I prayed--for God’s will and acceptance--and to get my ego out of the way. What mattered was that the stories got told and that the China Marines –Donald, Frenchy, Gene and Bones--lives got witnessed. Then it hit me. I could ask John to go with me, and he said yes. He would read if I couldn’t.
I loaded the podium with hot water, throat spray and cough drops and I explained to the audience that my husband might step in to read if my voice disappeared. John was standing by.
I read for the whole 55 minutes. I told the stories of men who served and survived and thrived—men who were my teachers. And after I finished reading I opened my mouth to say “thank you” and my voice was gone. It was a gift to be able to give the talk and John was beside me to take over.
Thursday, November 17, 2011
Powerless
Today I attended an Alanon meeting. Alanon is the 12 step program for family members or friends of someone with an addiction. Today I realized that Alanon is also 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 discussed in an Alanon meeting are all things 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 work for cancer and caregivers too.
The ideas discussed in an Alanon meeting are all things 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 work for cancer and caregivers too.
Tuesday, November 15, 2011
Where is God in Cancer?
This has been on my mind this week. How do you find God in cancer? Yes, we die and cancer is one of the mechanisms, but living in between the diagnosis and the death there are a lot of choices. It seems that there is a continuum with “offer it up” and long-suffering on one end and “there is a no God and fatalism (and a different kind of suffering maybe) on the other end. But maybe there is a surrender --with action --in the middle. That would not look the same for two patients or two caregivers.
Where, for each of us, is how we treat cancer, accept treatment, refuse treatments, or fight it? If God’s will is what is then is fighting cancer fighting God’s will? How do we practice acceptance when it means accepting cancer and death?
Where, for each of us, is how we treat cancer, accept treatment, refuse treatments, or fight it? If God’s will is what is then is fighting cancer fighting God’s will? How do we practice acceptance when it means accepting cancer and death?
Sunday, November 13, 2011
Zumba!
I am tired but energized by lots of exercise today. I went to a Pilates class and then on to a Zumba dance fundraiser. I had a small fantasy of dancing for hours but no. One hour of Zumba was plenty. But the nice thing about Zumba is the laughter—no mirrors, no perfectionism, no right and wrong just “keep moving”. It is a sexy exercise—Latin and African music, lots of hips swaying. Women of every size and shape which also inspires.
While I danced John watched football and did the grocery shopping. Yea! Now I’m working on a talk for caregivers coming up in December—can I bring that feeling of energy and acceptance I get at Zumba to cancer caregivers?
Tonight we have Veal Dorato and Graeters ice cream. It may undo the benefits of Zumba but it’s also time for pleasure—of all kinds.
While I danced John watched football and did the grocery shopping. Yea! Now I’m working on a talk for caregivers coming up in December—can I bring that feeling of energy and acceptance I get at Zumba to cancer caregivers?
Tonight we have Veal Dorato and Graeters ice cream. It may undo the benefits of Zumba but it’s also time for pleasure—of all kinds.
Friday, November 11, 2011
My Turn to Worry?
Even as I write this I think, “Do you really need this to be about you?” But I flunked my blood tests. Again. Twice in one year. Well, not flunked exactly, but a C-minus. Not enough white blood cells. It’s called neutropenia. I Googled like crazy and sad to say, it’s a kind of boring disease. They use the word idiopathic a lot which basically means “Who the fuck knows”.
It’s not like leukemia—I went there first. I mean I came of age with Ali McGraw and “Love Story”, so every girl in her fifties remembers the dream to die so beautifully and with the perfect camel coat. No, leukemia is too many white blood cells. I have too few. It’s like low self-esteem of the blood cells. Figures.
Last year when my tests came back like this I was sentenced to six weeks of blood tests at the hematology center and the doc said, “Yep, you have low white blood cells.” So I’m not overly impressed.
But way, way in the back of my head is a little voice that whispers, “This is how it starts.”
Saturday, November 5, 2011
Stranger Than Fiction
Last night was a great Friday night at home. I stirred up Cajun steak tips and sweet potato fries. Almond Joy ice cream for dessert. And then we watched my all-time favorite movie: “Stranger Than Fiction”. I love, love, love this movie. I watch it at least twice a year and it’s new every time.
“Stranger than Fiction” has the most amazing cast: Emma Thompson, Will Ferrell, Maggie Gyllenhaal, Queen Latifah and Dustin Hoffman and it’s about everything: literature and art, careers and creativity, and especially about death and love and taxes. It has one of the funniest pictures of a stuck writer I have ever seen and one of the greatest, most poignant love stories. And it’s about death. Facing death, accepting death. (That’s why I need to talk about it here.)
This movie makes me believe in art, in love, in courage, and in the sweet strangeness of human beings. And in cookies.
Guys: this movie sets the bar for how a man can win a woman’s heart with a gift. And ladies: Maggie Gyllenhaal’s handbag --and her arms, oh, her arms. Makes you want to do pushups over and over and over.
Stranger Than Fiction. It’s on Netflix.
“Stranger than Fiction” has the most amazing cast: Emma Thompson, Will Ferrell, Maggie Gyllenhaal, Queen Latifah and Dustin Hoffman and it’s about everything: literature and art, careers and creativity, and especially about death and love and taxes. It has one of the funniest pictures of a stuck writer I have ever seen and one of the greatest, most poignant love stories. And it’s about death. Facing death, accepting death. (That’s why I need to talk about it here.)
This movie makes me believe in art, in love, in courage, and in the sweet strangeness of human beings. And in cookies.
Guys: this movie sets the bar for how a man can win a woman’s heart with a gift. And ladies: Maggie Gyllenhaal’s handbag --and her arms, oh, her arms. Makes you want to do pushups over and over and over.
Stranger Than Fiction. It’s on Netflix.
Thursday, November 3, 2011
The Big--Happy--O!
Ok, here is one wild sex fact. (And more evidence for why we should be talking about sex in CancerLand.) Today I read an article about women and orgasms in the November/December issue of “Healthy Life” magazine. I read this: “Gordon Gallup, Jr., a psychology professor at SUNY Albany found that Prostaglandin, a hormone present in semen, is a natural antidepressant.”
It continues, “In a 2002 study of nearly 300 women, Gallup found that those who frequently had sex without condoms had significantly fewer symptoms of depression than those who were not regularly exposed to semen.”
Wow. Imagine the pick-up lines. “I just want to make you happy, baby.” And do you like that careful wording, “exposed to semen”. Prozac, Paxil or BJ?
It continues, “In a 2002 study of nearly 300 women, Gallup found that those who frequently had sex without condoms had significantly fewer symptoms of depression than those who were not regularly exposed to semen.”
Wow. Imagine the pick-up lines. “I just want to make you happy, baby.” And do you like that careful wording, “exposed to semen”. Prozac, Paxil or BJ?
Tuesday, November 1, 2011
Day of the Dead
Today I celebrate Dia de los Muertos, or Day of the Dead. It’s not a holiday I grew up with but one I’ve borrowed from the Southwest and Mexico. It’s become one of my favorite holidays partly because it’s a good spiritual counterpart to Halloween. Except for the candy, October 31st doesn’t leave much for grownups. Being scared of goblins and ghoulies lost its sway when I got old enough to lose people that I loved. The dead just aren’t scary in the same way anymore. In fact, I’d welcome a visit from some of them.
That’s what Day of the Dead is about. There is a belief that on this day the veil separating this world and the next is thinner and so it’s a time we can be closer to those that we love who are dead.
Day of the Dead celebration centers on rituals for remembering loved ones. We can visit in our imagination or feel their presence. It can mean prayer or conversation, writing a letter or looking at old photos. The tradition that I use includes making an ofrenda, or altar, something as simple as putting photos and candles on the coffee table and taking time to talk and remember. We also have chocolate as a symbol of the sweet and bitter separation from those we love.
A ritual is a way of ordering life. Whether Purim or Advent, hearing Mass or saying Kaddish, small ceremonies help us sort and reframe our memories. When someone dies the relationship doesn’t stop, it’s renegotiated, literally re-conceived.
This isn’t a very American idea. Culturally our preferences are for efficiency and effectiveness; even with grief we use words like closure and process.
I remember my frustration when I was grieving and well-intentioned friends would suggest I move along in my process and quoted Elizabeth Kubler-Ross. The simplified version of her theory lists stages: Denial--Bargaining--Anger--Depression, and Acceptance. But it’s false to create an expectation of five discrete steps. This listing implies order and that a person can move from point A to point B and be done. That makes grief seem like an emotional Monopoly game where you go around the board, collect points and get to a distinct and certain end. This false notion of linearity is apparent when we hear people judge someone who is grieving, “Oh she missed the anger stage”, or “He hasn’t reached acceptance yet.”
I always thought that “losing a loved one” was a euphemism used by people who were afraid to say the word dead.. But after losing my brothers I know that lost is the perfect word to describe the feeling that follows a death. Something just out of reach, still here, but also gone.
Though they died several years ago my feeling about my brothers is that I have misplaced them; It’s that sensation of knowing that my book or that letter I was just reading, are around here somewhere…if I could just remember where I left him.
I think this is why we can sometimes be so hard on the grieving, and why we want them to go through those stages and be done with it. We love closure and things that are sealed and settled. But death and grief, for all their seeming finality, are not as final as we would like.
So tonight I’ll make cocoa and light candles; we’ll look at pictures and tell stories and we’ll laugh.
The root of the word grieve is heavy. We carry our dead as a cherished burden. Death ends a life but not a relationship. Who would want to close the door on that?
That’s what Day of the Dead is about. There is a belief that on this day the veil separating this world and the next is thinner and so it’s a time we can be closer to those that we love who are dead.
Day of the Dead celebration centers on rituals for remembering loved ones. We can visit in our imagination or feel their presence. It can mean prayer or conversation, writing a letter or looking at old photos. The tradition that I use includes making an ofrenda, or altar, something as simple as putting photos and candles on the coffee table and taking time to talk and remember. We also have chocolate as a symbol of the sweet and bitter separation from those we love.
A ritual is a way of ordering life. Whether Purim or Advent, hearing Mass or saying Kaddish, small ceremonies help us sort and reframe our memories. When someone dies the relationship doesn’t stop, it’s renegotiated, literally re-conceived.
This isn’t a very American idea. Culturally our preferences are for efficiency and effectiveness; even with grief we use words like closure and process.
I remember my frustration when I was grieving and well-intentioned friends would suggest I move along in my process and quoted Elizabeth Kubler-Ross. The simplified version of her theory lists stages: Denial--Bargaining--Anger--Depression, and Acceptance. But it’s false to create an expectation of five discrete steps. This listing implies order and that a person can move from point A to point B and be done. That makes grief seem like an emotional Monopoly game where you go around the board, collect points and get to a distinct and certain end. This false notion of linearity is apparent when we hear people judge someone who is grieving, “Oh she missed the anger stage”, or “He hasn’t reached acceptance yet.”
I always thought that “losing a loved one” was a euphemism used by people who were afraid to say the word dead.. But after losing my brothers I know that lost is the perfect word to describe the feeling that follows a death. Something just out of reach, still here, but also gone.
Though they died several years ago my feeling about my brothers is that I have misplaced them; It’s that sensation of knowing that my book or that letter I was just reading, are around here somewhere…if I could just remember where I left him.
I think this is why we can sometimes be so hard on the grieving, and why we want them to go through those stages and be done with it. We love closure and things that are sealed and settled. But death and grief, for all their seeming finality, are not as final as we would like.
So tonight I’ll make cocoa and light candles; we’ll look at pictures and tell stories and we’ll laugh.
The root of the word grieve is heavy. We carry our dead as a cherished burden. Death ends a life but not a relationship. Who would want to close the door on that?
Monday, October 31, 2011
Trick or Treat
John was being grumpy about the kids coming to the door. “Stupid Holiday, stupid” every time the door bell rang. . Grumble grumble…so I went into the bedroom, changed into black lace stockings and put on my trench coat.…I went out the door and said over my shoulder, “If any kids come please answer the door and give them the candy.” Grumble grumble… then I went outside counted to ten and came back and rang the bell and when John opened the door I yelled “Trick or Treat” and flashed him.
A new attitude!
A new attitude!
Caught in the Middle
76 million of us Baby Boomers. That means a lot of sandwich generation caregivers. We are taking care of parents, sometimes grandparents, children, grandchildren, step children and spouses. We live longer but the fine print that accompanies that good news says that we live longer with more illness and more—multiple—disabilities. (Of course we; do you can’t live longer without stuff happening to your body.)
So where is the good good news? It’s this: There are a lot of us and so we have colleagues and peers and can have companions if we seek them out. Our friends are caregivers too and we can support each other and trade information. We can take turns driving, shopping and listening. We can volunteer. We can commiserate.
We can’t change life and we can’t change death but we can help each other.
So where is the good good news? It’s this: There are a lot of us and so we have colleagues and peers and can have companions if we seek them out. Our friends are caregivers too and we can support each other and trade information. We can take turns driving, shopping and listening. We can volunteer. We can commiserate.
We can’t change life and we can’t change death but we can help each other.
Saturday, October 29, 2011
Oh God!
The downside to being an atheist is that you have no one to cry out to in the throes of an orgasm.
Tuesday, October 25, 2011
Obituaries
I read obituaries every day. I have since I was in my twenties. I think of them as little stories, very, very short novels or Haiku lives. But recently I’ve been keeping score of how many of the regional dead are in their late 50’s or early 60’s—our ages—me and John.
I think again—“People my age and John’s age die every day.” And they are not extraordinary deaths, just regular ones from illness and disease and cancers.
I try to use this in a positive way. To remind myself to live my life—mine and not someone else’s idea of my life. To choose my day and –maybe I can’t completely choose what’s in that day --but to choose my attitude about that stuff. To include more of what does matter to me in this day and less of what doesn’t.
I don’t want to die on the day that I was obsessed with who didn’t like me or on the day that I kept trying to please someone else.
I think again—“People my age and John’s age die every day.” And they are not extraordinary deaths, just regular ones from illness and disease and cancers.
I try to use this in a positive way. To remind myself to live my life—mine and not someone else’s idea of my life. To choose my day and –maybe I can’t completely choose what’s in that day --but to choose my attitude about that stuff. To include more of what does matter to me in this day and less of what doesn’t.
I don’t want to die on the day that I was obsessed with who didn’t like me or on the day that I kept trying to please someone else.
Monday, October 24, 2011
Loves Long Walks on the Beach
This weekend felt like a good Hallmark card or a bad Match.com posting. A beautiful fall weekend on Cape Cod. On the drive there we laughed listening to Tina Fey “Bossypants”. Ate steamers and fried clams and blueberry pie. John did chores. I hit the jackpot at TJ Max. And we had long, long walks on the beach. Holding hands. Laughing. We saw a friend’s new house. Went to the movies. Felt so grateful for our lives. This is one of those times when it feels like the clouds parted. I feel grateful for every struggle and every minute of therapy that got us here. Not that I want to relive any of it. No, but I do love long walks on the beach
Friday, October 21, 2011
My Dead Friends by Marie Howe
I have begun,
when I'm weary and can't decide an answer to a bewildering question
to ask my dead friends for their opinion
and the answer is often immediate and clear.
Should I take the job? Move to the city? Should I try to conceive a child
in my middle age?
They stand in unison shaking their heads and smiling-whatever leads
to joy, they always answer,
to more life and less worry. I look into the vase where Billy's ashes were-
it's green in there, a green vase,
and I ask Billy if I should return the difficult phone call, and he says, yes.
Billy's already gone through the frightening door,
whatever he says I'll do.
-- by Marie Howe
when I'm weary and can't decide an answer to a bewildering question
to ask my dead friends for their opinion
and the answer is often immediate and clear.
Should I take the job? Move to the city? Should I try to conceive a child
in my middle age?
They stand in unison shaking their heads and smiling-whatever leads
to joy, they always answer,
to more life and less worry. I look into the vase where Billy's ashes were-
it's green in there, a green vase,
and I ask Billy if I should return the difficult phone call, and he says, yes.
Billy's already gone through the frightening door,
whatever he says I'll do.
-- by Marie Howe
Monday, October 17, 2011
Vagina
Words—it’s all about words. Language is what creates our reality, and language is what allows us to think. Think about that. If you have language, you have power and in CancerLand we need all the power we can get.
Words really do matter. That’s what got me started on this journey of writing about sex and intimacy and cancer. I had to write out my frustration because of all the words no one would use with me and John, and because of the words they did use that made me crazy.
But it’s not just in CancerLand. Our culture is inhibited about sexual language and even anatomical language. Now, I know that most women over 30 think they have that nailed. We do not talk like our mothers or our grandmothers. We have come to a place where we believe that we are so open and forthright; we don’t say “down there” or “pee pee” to refer to our genitals but we have raised a huge group of young girls who think their whole genital area is a vagina.
No! That is not your vagina or your Vajayjay—sorry Oprah. Most of the time we are mislabeling the mons, vulva, labia and clitoris, with the equally euphemistic vagina.
And that is a problem in CancerLand and in women’s lives. To think we need words and to have intimacy we have to have words. So what are we gonna do about our words?
Words really do matter. That’s what got me started on this journey of writing about sex and intimacy and cancer. I had to write out my frustration because of all the words no one would use with me and John, and because of the words they did use that made me crazy.
But it’s not just in CancerLand. Our culture is inhibited about sexual language and even anatomical language. Now, I know that most women over 30 think they have that nailed. We do not talk like our mothers or our grandmothers. We have come to a place where we believe that we are so open and forthright; we don’t say “down there” or “pee pee” to refer to our genitals but we have raised a huge group of young girls who think their whole genital area is a vagina.
No! That is not your vagina or your Vajayjay—sorry Oprah. Most of the time we are mislabeling the mons, vulva, labia and clitoris, with the equally euphemistic vagina.
And that is a problem in CancerLand and in women’s lives. To think we need words and to have intimacy we have to have words. So what are we gonna do about our words?
Thursday, October 13, 2011
The Pig in the Python
We, the “Baby Boomers”, were born between 1946 and 1964. Nice numerical bookends to remember who we are. I was born in 1953 so I’m nicely embedded in the center of this large, unruly, and predictable but independent demographic group. We are—according to demographers-- the “Pig in the Python”—so named because they can watch us move along the lifespan and longevity track.
Yes, we know there are so many of us and we know the benefits. Wish for a more comfortable shoe for your middle-aged feet? Ten new brands. Want a vacation geared to an aging but not willing to admit it body? Thousands to choose from.
But here’s a fun fact to pause and think about: Our big group is aging together and we are getting—and going to get—disabled together, and we are going to have more and more and more cancer together. This is the consequence of our “Boomer Bump” combined with better healthcare. The longer you live the more cancer, and more likelihood of cancer, you’ll have.
So we all have a very selfish and very altruistic reason to care about cancer. If you too were born between 1946 and 1964 cancer is coming soon to a body near you.
Yes, we know there are so many of us and we know the benefits. Wish for a more comfortable shoe for your middle-aged feet? Ten new brands. Want a vacation geared to an aging but not willing to admit it body? Thousands to choose from.
But here’s a fun fact to pause and think about: Our big group is aging together and we are getting—and going to get—disabled together, and we are going to have more and more and more cancer together. This is the consequence of our “Boomer Bump” combined with better healthcare. The longer you live the more cancer, and more likelihood of cancer, you’ll have.
So we all have a very selfish and very altruistic reason to care about cancer. If you too were born between 1946 and 1964 cancer is coming soon to a body near you.
Sunday, October 9, 2011
Steve Jobs: How to live before you die | Video on TED.com
Tonight I watched this video of Steve Jobs at Stanford and loving hearing him talk about doing what you love and embracing death every day. That is a great way to love in the time of cancer. Click on the link below to see and hear this 12 minute talk:
Thursday, October 6, 2011
Steve Jobs
I am sad about Steve Jobs. He died yesterday from pancreatic cancer and its treatment. I didn’t know him—my only connection is an I Phone and a laptop. But he was 56 and smart and talented and fierce.
Maybe too, his death is a reminder—again—that we die. And that no amount of money, access, power or even the best healthcare in the world can beat death. We die.
I’m also saying to myself, “Oh Diane, get this, please get this, people my age and John’s age die every day--and death at our age is not extraordinary, so really, does work or money or who doesn’t like me really matter?”
I know that the answer is “no”. But living it—that’s another matter.
Maybe too, his death is a reminder—again—that we die. And that no amount of money, access, power or even the best healthcare in the world can beat death. We die.
I’m also saying to myself, “Oh Diane, get this, please get this, people my age and John’s age die every day--and death at our age is not extraordinary, so really, does work or money or who doesn’t like me really matter?”
I know that the answer is “no”. But living it—that’s another matter.
Tuesday, October 4, 2011
Kegels
Kegels are on the list of things we don’t talk about with our friends. But we should. We really should. If sex isn’t satisfying it is mostly because it’s not pleasurable. And it’s not pleasurable because we’re not having orgasms or not having them often enough or with the intensity to send those endorphins loose.
Strengthening your pelvic floor muscles makes the difference.
I wish that someone had told me about Kegels 20 years ago. So I am telling you. You can click on the link below to the Mayo Clinic website for an explanation and discussion.
There should be public service announcements about Kegels. Book groups should talk about Kegels. Weight Watchers should have handouts on Kegels: Want to eat less? Have more orgasms—do your Kegels!
http://www.mayoclinic.com/health/kegel-exercises/WO00119
Strengthening your pelvic floor muscles makes the difference.
I wish that someone had told me about Kegels 20 years ago. So I am telling you. You can click on the link below to the Mayo Clinic website for an explanation and discussion.
There should be public service announcements about Kegels. Book groups should talk about Kegels. Weight Watchers should have handouts on Kegels: Want to eat less? Have more orgasms—do your Kegels!
http://www.mayoclinic.com/health/kegel-exercises/WO00119
Sunday, October 2, 2011
Volunteer Opportunities with the American Cancer Society Hope Club
I saw the staff team from The American Cancer Society Hope Club today and learned about their volunteer opportunities. I’ve done some of these activities as a volunteer in the past and I know how satisfying and manageable they are--and how appreciated. Check it out:
Drivers for Road to Recovery: give someone a ride to treatment—round trip or one way. Surprisingly easy to do—even if you are working or have kids.
Coordinator for Road to Recovery Drivers: You will be blown away by the people you meet and talk about having gratitude in your day! Yes!
Patient Navigation: If you have been through CancerLand you can help someone else. Share the wisdom; translate the jargon; teach a caregiver how to cope; turn victim into advocate. You already know so much.
For more information call The ACS Hope Club at 518-782-9833
Drivers for Road to Recovery: give someone a ride to treatment—round trip or one way. Surprisingly easy to do—even if you are working or have kids.
Coordinator for Road to Recovery Drivers: You will be blown away by the people you meet and talk about having gratitude in your day! Yes!
Patient Navigation: If you have been through CancerLand you can help someone else. Share the wisdom; translate the jargon; teach a caregiver how to cope; turn victim into advocate. You already know so much.
For more information call The ACS Hope Club at 518-782-9833
Saturday, October 1, 2011
Strawberries and Plums
At the funeral on Wednesday the priest shared this Buddhist parable:
A man walking across a field encounters a tiger. The man runs and the tiger chases him. Coming to a cliff, the man caught hold of a wild vine and swung himself over the edge. The tiger sniffed at him from above. Terrified, the man looked down to where, far below, another tiger had come, waiting to eat him. Then two mice, one white and one black, little by little began to gnaw away at the vine. Realizing his situation the man looks around and sees nearby a luscious strawberry. Grasping the vine in one hand, he plucked the strawberry with the other, and popped it in his mouth. How sweet it tasted!
We are that man. Lots of tigers. Lots of mice. And if we look around, lots of ripe strawberries.
This reminder to taste the fruit of life brought to mind the poem, “This is Just to Say” by
William Carlos Williams:
I have eaten
the plums
that were in
the icebox
and which
you were probably
saving
for breakfast
Forgive me
they were delicious
so sweet
and so cold.
A man walking across a field encounters a tiger. The man runs and the tiger chases him. Coming to a cliff, the man caught hold of a wild vine and swung himself over the edge. The tiger sniffed at him from above. Terrified, the man looked down to where, far below, another tiger had come, waiting to eat him. Then two mice, one white and one black, little by little began to gnaw away at the vine. Realizing his situation the man looks around and sees nearby a luscious strawberry. Grasping the vine in one hand, he plucked the strawberry with the other, and popped it in his mouth. How sweet it tasted!
We are that man. Lots of tigers. Lots of mice. And if we look around, lots of ripe strawberries.
This reminder to taste the fruit of life brought to mind the poem, “This is Just to Say” by
William Carlos Williams:
I have eaten
the plums
that were in
the icebox
and which
you were probably
saving
for breakfast
Forgive me
they were delicious
so sweet
and so cold.
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