When Your Husband Has Cancer You May Have to Lie

This post was originally posted in the July 22, 2013 of the The Huffington Post.  By Judy Silk.  Judy Silk is a stand up comic, freelance writer and blogger at judemablogma.blogspot.com. A California native, she requires little water.

Cancer is everywhere. It's probably just a function of my age (56), but I seem to know way too many people, close ones, who are affected.

My husband for one. He is my second husband, and the love of my life. We both needed to be divorced to find our way to each other, and consider it to have been beshert (the Yiddish word for "meant to be"). We got married with our children on a family cruise to Alaska. One year later, he was diagnosed with colon cancer. I've had to deal with that. I've had to be devastated, crushed, strong, hopeful and cheerful. My rabbi said to me early on, "Don't go to the funeral today," and I've taken that to heart. We live each day fully, lovingly and gratefully. But his diagnosis is terminal. Short of a miracle, that is our plight.

I was motivated to write this because I have known an overwhelming outpouring of support, concern and offers of help and love. I feel like I want to put a precision to these offers, and to the reality of what living with a terminal loved one entails. We sometimes want to dance around the fine points, but I'm hoping it would serve everyone well if I could articulate some details. After all, I want help and I know you want to give it. Here are some things you might want to consider if you know someone with cancer.

1. Accept that I am going to have to lie to you. When you ask, "How's he doing?" accept that it's in your and my best interest for me to be non-specific. So I have to say, "He's doing okay," and leave it at that. We can then be appreciative that you asked, and you can be thankful to not know more. They say the devil is in the details.

2. Don't tell us to give up sugar. I know you mean well with your solutions and alternative treatments. You want to share and provide an opportunity to do what no medical science can do, but you're also telling a dying man that he should spend his last remaining days, months or years torturing himself for NO REASON. At this point, we look at every day like a Last Supper. And I encourage him to do ANYTHING HE WANTS. We don't give up hope. Never. But I want him to have all pleasure, all indulgence. I want him to have the greatest joy he's ever had. Can you see why when you say, "Give up sugar and dairy and you'll be cured," it comes across like "If you don't deprive yourself, you are therefore responsible for killing yourself?" It's a really ugly notion and not valid in his case. His cancer is wide-spread. I shouldn't have to explain this to you.

3. When you ask what you can do for us, be ready for it to be something other than a casserole. Because what really helps are small things. Going to Trader Joe's? Give me a call. Nine times out of 10, I won't need it, but this might be the 10th time that I do. If you have kids my daughter's age, and you're going to a movie, maybe you could invite her? I don't mean for you to invent activities, and certainly not every week. I wouldn't want my daughter to think I'm getting rid of her, but it makes me feel less like I'm imposing if the invitation comes from you rather than me asking.

4. Call and invite me to kvetch. I may not, but I need some irrational venting. For me to complain about the cancer is futile. But that doesn't mean that I don't harbor anger and frustration in my bloodstream. So maybe help me by allowing me to unload it on some unsuspecting target, like say, a neighbor who has perpetrated a slight insult upon me. If I can heap my scorn on that deflective victim, it helps unravel the hurt.

5. At a certain point, families like ours do need a little extra cooking help. Not an onslaught (we don't have a big enough freezer), and not a schedule -- we're not to that point -- but occasionally. So you might ask if I have a recipe you could make, or if you're making some killer wild-rice salad, offer to bring us a quart? That kind of thing. But ask first. When I just get random quarts of foods, it eerily reminds me of being at the end point, and I don't want that.

6. Give me a coupon for a favor. Since I'm working, raising a teenager, still parenting a college kid and caring for an elderly widowed Mom who lives an hour away, I miss a lot. Things that occur to me that are helpful would be: offering to drive down to a pharmacy across town to pick up our increasing cornucopia of meds; offering to drive my teenager to an appointment or activity; having your kid offer to walk the dogs for us. Maybe if you're going out to dinner, see if you can pick something up for us. Even if we get it after we've had dinner, we may like to have it the next day. That kind of thing.

The amazing thing about this whole cancer experience has been the extreme outpouring of support from our friends and relatives. Everyone says, "If there's anything I can do, please let me know." But it's hard to be in the position of repeatedly asking for help. As primary caretaker, I don't want to look or be pathetically needy. I know that in my heart it makes people feel good to help out. It would for me. This list is just a guideline that might make it easier for us both to band together to support the one who ultimately needs it, the one who is no longer in the position to be too proud to ask for help. It allows me to acknowledge that I have more on my plate than I can handle sometimes, and I hope it's a good road map for us to work together to support the whole.

Thanks mostly for listening. Oh, and I have a really good recipe for paella. (Too much?)


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Dressing Up and Going Out

Victoria Moore is a writer and CSC member.

   I love doing makeovers. If that seems strange coming from someone who's been through Stage II Breast Cancer, it might be if you didn't know how it helped me get through my cancer journey.  Not only did it allow me to focus in a more positive way, it also gave me the chance to rejuvenate myself with the skills I had learned from my past experiences in retail. Equipped with every fashion magazine I could get my hands on, I studied fashion just like I had done before as a Fashion Merchandising student at CSULA. But this time I was doing research on my own since I couldn't afford to get a professional makeover every time I needed one.

 Now that I'm on the post-cancer drug part of my cancer experience, I'm faced with new challenges. My primary dilemma is how to psychologically prepare myself for a world where I have to consider permanent scarring, a prosthetic bra and budgetary restrictions. Despite all of my problems, I still want to look stylish and stay in the fashion game.

   While doing internet research for this blog, I came across an article "Breast Cancer Survivor: Fashion Hints After Your Mastectomy," reviewed by Charlotte E. Grayson Mathis, M.D., where Mary McCabe, RN, Director of the Cancer Survivorship program at Memorial Sloan Kettering Center in New York said, "Everyone needs to reassess their personal style after breast cancer."

   After reading it, I understood it to mean that I'd have to figure out how my clothes could express who I am today instead of who I was before my diagnosis. To do this, I started broadening my fashion research and including the internet. My favorite online sources are tokyofashion.com, Ivey Abbitz, Wasteland, Nasty Gal and Pinterest. While doing my research, I was able to compile my own magazine clip file for inspiration. It didn’t matter if I selected a fashion layout from "Elle" that featured a goth/romantic look accessorized with Victoriana from 2013 or an 2010 article from “Vogue” about pearls, because I was creating a fashion story that could stimulate my imagination.

    Lately I've been influenced by a Japanese style called "Dolly Kei" which is a "vintage-inspired fairy tale world" created by a store called "Grimoire." It consists of antique dresses, decorative hosiery, elaborate hairstyles decorated with ribbons, flowers and other props, pearls, antique gold necklaces and platforms or oxford shoes. Its femininity and use of flea market clothing is what appealed to me the most. My personal style includes the use of girly and feminine elements and the incorporation of second-hand and vintage clothing with modern pieces. I have been a collector and a regular thrift store shopper for many years now, so I've amassed an interesting mix of styles that I can go to whenever my wardrobe needs a boost.

   After studying 150 photos of the "Dolly Kei" event in Japan on Facebook, I started to resolve some my problems and even felt encouraged and hopeful. I looked at myself as a new person - I was still capable of taking style chances and was able express myself in multiple ways. I now feel more positive about the future and even look forward to getting up and getting dressed every day.

 

 

THE PHUKET LIST OR TEN THINGS I'M JUST AS HAPPY TO NEVER DO BEFORE I DIE

This post was originally posted in the October 7, 2011 The Huffington Post.  By Judy Silk.  Judy Silk is a stand up comic, freelance writer and blogger at judemablogma.blogspot.com. A California native, she requires little water.

We are all influenced by pop culture. Who didn't want to go out and adopt a homeless football player after seeing The Blind Side? And how many of you got your yellow labs after seeing Marley and Me?

It was no different with the wonderful film, The Bucket List, starring those icons of inspiration, Jack Nicholson and Morgan Freeman. They portray two old guys facing terminal illnesses who goad each other into accomplishing some long held fantasies as they stare down that long tunnel with the white light at the end. It inspired lots of people to do the same, but to not wait till staring down the barrel of termination. There are now scores of books you can read in case you can't figure out how to make your own Bucket List; 1001 places to visit before you die, books to read, foods to eat, movies to see, horror movies to see, etc.

Mass trends inspire me sometimes. But just as easily, I can get contrarily inspired by what I see as the mindlessness of trend following. I was therefore inspired during one of my frequent visits to insomnialand to create my own list. Introducing The Phuket List. 10 incredible things I'll be just as happy to never do before I die.

1. Go to Phuket (Thailand)
Once a typhoon destination, always a risk of being a typhoon destination again. I get that it's exotic, and gorgeous, and the culture is amazing. But whoever said that lightning doesn't strike twice was being naively optimistic. So, I'll have to get my beach on in Hawaii. I know a typhoon could hit there too, but somehow it feels safer.

2. Trek to Nepal
I get altitude sickness. Enough said.

3. Ski Down the Matterhorn
I don't like going down hill fast. I don't like knowing that five-year-olds can snow plough, but I can't. If stopping weren't an issue, I imagine the whooshing and the gliding part would be enjoyable. But stopping is an issue, so the whooshing and the gliding part are more than a little terrifying. Besides that, there's the schlepping of the skis and the poles, and the loading on of layers, and the sweating, and the shedding of those layers, and the nose running, and the crowds. And, does anyone look graceful walking in ski boots? I find the Matterhorn at Disneyland thrilling enough. That snow isn't even cold.

4. Backpack Across Asia
Well for one thing, Asia is a large continent. For another, I'm not a big fan of camping altogether. Truth be told, I'm not so fond of sunshine or being all out in nature. So, carrying your food, your housing, your bathroom, your water, and your creature comforts has a cumulative negative effect on my mood. I think there's a reason we evolved into houses with walls. Separating from the elements is civilizational progress. I would hike between huts if they came with beds, flush toilets and food, but where's that going to happen?

5. Travel Anywhere Without Flush Toilets
I thought about giving an example of why this is so, but it grosses me out so much, I just couldn't.
 
6. Walk Up The Eiffel Tower 
 What happened, did the elevators break down? 

7. Skydive or Bungee Jump
As much as I like speed, and the wind rushing through my hair and all that, here's what I know: The instant both feet left the platform, I would have a heart attack, and feel myself dying in the slow, long 5 seconds of the plunge. I would however watch others jumping.

8. Have a Drink with the President
As much as I love this President, there's just no way it would turn out well. I would always know that I was nervous, and he was just being polite, and it would be awkward, and I would probably have huge regrets afterwards for all the things I could have said or asked but didn't.

9. Swim with Sharks
I've probably already done this. I think that by doing it without knowing it is all I can hope for. If I'd been aware of it at the time, I'm sure they would have smelled my fear and consumed me immediately. And even though I've read The Worst Case Scenario Handbook, I'm still confused as to whether you are supposed to defend yourself by hitting them in the snout or the eye. So, better I should focus on a dolphin or sea turtle instead.

10. Finish This List
I think you get the idea.

In closing, I wouldn't want you to think I'm against goal setting, or planning challenging adventures. It's just that I know what my parameters of comfort are, and will feel just as accomplished if I honor those while I live my life before I die.


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When Choirs Sing, Many Hearts Beat As One

 

The Cancer Support Community-Benjamin Center has a Circle Singing group that meets the 1st Saturday of each month from 11a.m. to 12:15p.m. with Patricia Bahia.  Read NPR article below about new research about the benefits of music sung together to relieve anxiety.

 

 

 

 

 

 

 

 

 

 

 

 

by Anna Haensch

July 10, 2013 1:43 PM
from 'Shots' Health News from NPR

We open our hymnals to Hymn 379, and we begin to sing. "God is Love, let heav'n adore him / God is Love, let earth rejoice ..."

Lifting voices together in praise can be a transcendent experience, unifying a congregation in a way that is somehow both fervent and soothing. But is there actually a physical basis for those feelings?

To find this out, researchers of the Sahlgrenska Academy at the University of Gothenburg in Sweden studied the heart rates of high school choir members as they joined their voices. Their findings, published this week in Frontiers in Neuroscience, confirm that choir music has calming effects on the heart — especially when sung in unison.

A Swedish researcher explains how heart rates become synchronized when people sing together.  Using pulse monitors attached to the singers' ears, the researchers measured the changes in the choir members' heart rates as they navigated the intricate harmonies of a Swedish hymn. When the choir began to sing, their heart rates slowed down.
 

"When you sing the phrases, it is a form of guided breathing," says musicologist Bjorn Vickhoff of the Sahlgrenska Academy who led the project. "You exhale on the phrases and breathe in between the phrases. When you exhale, the heart slows down."

But what really struck him was that it took almost no time at all for the singers' heart rates to become synchronized. The readout from the pulse monitors starts as a jumble of jagged lines, but quickly becomes a series of uniform peaks. The heart rates fall into a shared rhythm guided by the song's tempo.

"The members of the choir are synchronizing externally with the melody and the rhythm, and now we see it has an internal counterpart," Vickhoff says.

This is just one little study, and these findings might not apply to other singers. But all religions and cultures have some ritual of song, and it's tempting to ask what this could mean about shared musical experience and communal spirituality.

"It's a beautiful way to feel. You are not alone but with others who feel the same way," Vickhoff says.

He plans to continue exploring the physical and neurological responses of our body to music on a long-term project he calls Body Score. As an instructor, he wonders how this knowledge might be used to create more cohesive group dynamic in a classroom setting or in the workplace.

"When I was young, every day started with a teacher sitting down at an old organ to sing a hymn," Vickhoff says. "Wasn't that a good idea — to get the class to think, 'We are one, and we are going to work together today.' "

Perhaps hymns aren't for everyone, but we want to know, what songs soothe your heart? For a bit of inspiration, we've included a clip of the Mormon Tabernacle Choir, whose members know a lot about singing together.

To view original post: http://www.npr.org/blogs/health/2013/07/09/200390454/when-choirs-sing-many-hearts-beat-as-one?utm_medium=Email&utm_source=share&utm_campaign=

LOVE DOESN'T GET CANCER

This post was originally posted in the December 27, 2012 The Huffington Post.  By Judy Silk.  Judy Silk is a stand up comic, freelance writer and blogger at judemablogma.blogspot.com. A California native, she requires little water.

I'm letting the bad cat out of the bag. My husband has terminal cancer. I don't say that word much, terminal. It sounds defeatist. When the oncologist says there is no cure, or the radiologist says we're just administering palliative care, I try and ignore the offending phrase. But the real truth is there is no cure. The definition of palliative is to treat the symptoms and pain without dealing with the underlying cause. Cancer is a nasty, nasty beast.

But we are living with it. And I mean living with it and ignoring it to some degree. Dan's had chemo for the last year and a half and is now receiving radiation as well. During the chemo years, he would have treatments once every two weeks, and then a break. The chemo week was sometimes pretty bad, but the off week was usually pretty good.

That is where we live: in the good weeks. I was a mess when I first heard his diagnosis: Stage IV recurrence of colon cancer. But a dear friend came and gathered me up, mopped up my tears and took me to see our rabbi. He hugged me until my sobbing subsided, then let me spill out all my fears and sadness. He voiced some pearls of wisdom, some sympathy, and then this. "We're all going to die," he said. "It's never easy. It's never easy when you're staring it down. But, don't go to the funeral today," he said. "Today, you have your husband with you. Today you love each other. Today you can be together. Don't go to the funeral today."

That phrase broke through the heavy curtain of my grief. Don't go to the funeral today. It even let a little sunshine in. He was right. Unlike a sudden death, we have more time to live together. We have each day.

So, I put on the cloak of happy caretaker. I pulled out my Obama campaign shirt from 2008 -- "GOT HOPE?" -- and it became my chemo ward uniform. It also became my mantra. For every day I have hope, I have oxygen. For every day we wake up together, I have joy. For every day we are a couple, I'm singing. I have this man for my husband. I'm beyond words thankful.

All this is not to say we never acknowledge the bum rap. Or that we never realize, separately or together, that we won't live out the sunset years together It doesn't mean that we don't talk to each other about it. But we don't have time to wallow in our plight. We don't need to. Cancer is random. It does no good to be angry. Being angry just takes away another minute, another particle of energy I get to spend with the man I love. People who know our situation wonder at our ability to stay cheerful. It's simple. We're here today. We get to be together, we get to be with the ones we love today, we get to hear music, hike the mountains, and feel the sun or the rain on our faces. Love is simple. Hope is oxygen for the soul.


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A Cancer Doctor of One’s Own

By Susan Gubar
From

   Health Science Living With Cancer July 11, 2013, 11:20 am

Sometimes sessions with my oncologist resemble meetings with a therapist. Why am I entranced with a woman who continues to prescribe procedures that distress me? The attraction was instantaneous, maybe because I had been so dismayed by her predecessor.

After I first learned I had ovarian cancer, four years ago, the oncologist who appeared at my hospital bedside struck me as shifty. He made his pitch with darting eyes, explaining that the patients he treats are grateful because he lets them off the hook when they are exhausted and want an extra week between infusions. Another person might have found his attitude protective. I found it patronizing. 
To be fair to him, I was in a state of shock and would have reacted with revulsion against any oncologist. When I was first diagnosed, the disease felt like a death sentence that needed to be mourned. Neither the promise of a week’s respite during treatment nor the convenience of a doctor’s office minutes from my house could override my (undoubtedly irrational) antipathy.

Should it matter what oncologist we choose, since the “gold standard” of many chemotherapy protocols remains the same throughout many medical institutions in this country? Whether you are being treated at a private practice or in a research center, oncologists tend to recommend similar regimens in response to various cancers. Most patients need to find someone well certified within a 60-mile radius of their home.

But not anyone will do. Unlike surgeons, oncologists conduct their business over a course of months or years. During the many 15- or 20-minute sessions, patients and doctors relate to each other through small talk, one of the most intimate of human exchanges.

Yes, there is the occasional prodding finger, or a stethoscope might appear. But more often the oncologist and the cancer patient engage in conversation. If the doctor seems hurried or arrogant or incomprehensible, it may be impossible for trust to evolve. And, odd as it may seem, trust is the heart of the matter. For few of us patients comprehend the biochemistry of cancer treatments. And without a judicious adviser, how can we calculate the tradeoffs of protocols that may gain us time but pain us in the process?

It was pure luck that I found the perfect oncologist.

Brandishing my list of questions, I traveled to Indianapolis, 50 miles from my home, focusing on my need for brute honesty. There I would see Dr. Daniela Matei, whose Romanian origins, I told myself, would perfectly serve my needs. Who can think about Romania without considering its tormented history, its ruined orphanages and gypsy traditions and gothic vampire myths? She had a background that would make it possible for her to recognize the tragic dimensions of my fate.
My vision of Romanian gloom-and-doom, so hilariously stereotypical, evaporated the moment an ebullient 40-something woman with earnest brown eyes and bouncy brown curls entered the room. Although I could take in only a fraction of the complex medical information she carefully enunciated, she answered every question with candor and understood better than I did that my ultimate outlook was bleak. But she nevertheless seemed to relish her work and even our chat. She was an academic, like me, with an immigrant past not unlike that of my parents. She resembled my young colleagues, except she wore snazzier shoes.

I was overjoyed when I learned that Dr. Matei was a published poet. At the time, I knew this meant we both cared passionately about language. Now I realize that she understands and fosters my need to write . . . sometimes about her.

The strange rightness of our relationship underscores how quirky the needs of cancer patients are. Some people want physicians with the best record of keeping their patients alive the longest amount of time. Others look for a Jewish or an Indian doctor or an older man of high rank. Some put their faith in a particular research center, others in a particular referral system. Some need a good deal of time spent on reassurance, others crave the clarity of honest disclosure, as I do.
Because I trusted Dr. Matei’s truthfulness, I enrolled in many more protocols than I ever thought I would. In return, she gave me a priceless gift. While she implicitly accepted my conviction that the disease would kill me, she offered a limited quantity of quality time — four years in which I have been able to write . . . usually not about her.

Although I profit from the research investigations of Dr. Matei, what I cherish is my sense that she will level with me when medical interventions cannot control the cancer and become pointless, or worse. Our monthly dialogues revolve around our families or our writing, and in the process I believe that she has discerned and respects my values.

As a scientist, Dr. Matei assumes that talking has nothing to do with curing. As humanists, we both know that talking helps me live with cancer and leads me to imagine dying at home, with my family, and not in the midst of debilitating treatments. From small talk, small hopes spring eternal.

To go to original site:
http://well.blogs.nytimes.com/2013/07/11/a-cancer-doctor-of-ones-own/