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Day 3, Celebrating the Ordinary

Tuesday, August 28, 2012

©Brenda Coffee. All rights reserved.

Can you see that? It's rain, rolling in rivulets off my roof! Ordinary and yet, sometimes rare, rain! Granted, it didn't last more than five minutes, but I hurriedly removed the cushions from the chairs and then stood in the doorway and smiled. Rain! Our cracked dry earth is drinking it in like the life-giving elixir it is. 

What is it about the smell of fresh rain? Do you suppose that loamy, earthy smell is universal, or does Marie's rain in Ireland have a different smell than Philippa’s rain in Myanmar or mine in South Texas?

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Day 2, Celebrating the Ordinary

Tuesday, August 28, 2012

©Brenda Coffee. All rights reserved.

As a part of continuing my friend, Marie’s, challenge to photograph and write about the “ordinary,” let me say I’m not sure anything about yesterday was ordinary. The day began in the limestone courthouse of my little town. After several hours of listening to testimony in a case James had been an integral part of, and that affects me and my neighbors and our right to enforce our deed restrictions, I had to leave to check on Goldie. My girl is on pain meds and is restricted to the smallest room of my Little House, the bathroom. For now, all I can say is there’s a real possibility I may have to send my best girl to live with God, and I’m not ready, yet, to think about losing another family member.<PREVIEWEND>

After checking on Goldie, I headed into San Antonio for an appointment with the dermatologist. Because I carry the BRCA2+ breast cancer gene, which means I’m predisposed to melanoma, once a year “Dr. Humorless,” cryogenic bottle in one hand, and a magnifying glass dropped down over his glasses, checks every inch of me. I think he enjoys it, but I’m not sure whether “it” is my naked body or the process of freezing off suspicious moles. If I had to guess, I’d say the freezing part gets Dr. Humorless’s juices flowing, if you know what I mean. It’s just the way his one, magnified Mr. Magoo eye looks up at me, as if to say, “Heh, heh, heh, little girl.” Reminiscent of Hannibal Lector, he makes me wonder if my moles would go well with “some fava beans and a nice chianti.”

My next stop was a television studio to shoot a spot for Cure Fur Cancer, an upcoming fur fashion show and cancer fundraiser. You would have thought I would be a pro at this, but I was terrible! When I started talking about cancer and the devastating affect it has on families, I was emotional toast! No matter how hard I tried, I couldn’t get the lump out of my throat. It wasn’t just that I was talking about how families are pulled apart by cancer. My emotions about James, and the case he worked so hard on and the prospect of losing Goldie, were all jumbled up together with cancer families. Carol Glaze, owner of Morris Kaye & Sons Furs, was so gracious about my on camera ineptness. Thank you, Carol. Each year Carol does an amazing job of rounding up ever more awesome auction items and then making it easy for people to bid lots of money for them. If you’re in the San Antonio area and would like to join us, September 15th, or donate money to Cure Fur Cancer, come on down!

By the end of the day, I’d put 150 miles on my car, but not before I stopped at a favorite place for a quick bite to eat. What could be more ordinary and basic than a simple meal of water, that when really cold, has the texture of velvet; goat cheese and basil pesto; fruit and crackers and prosciutto and fontina paninis? Considering my long, disjointed day, it was exactly what I needed. The Fonze would have said it was “Perfectamundo.”

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Sunday: Celebrating the Ordinary

Sunday, August 26, 2012

©Brenda Coffee. All rights reserved.

For most of my life my camera has been an appendage I’ve rarely been without, but since James died, it has languished, unused, in the bottom of my purse. The fact that my camera’s been relegated to a purse is extraordinary in and of itself, especially considering that until a few years ago, I rarely owned or carried a purse... only camera cases.<PREVIEWEND>

Recently, however, when friends came to visit, I pulled my neglected camera out of my bag. It felt good to have a camera in my hands, again. It was particularly timely because my friend, Marie, has challenged her fellow breast cancer bloggers to capture, in photographs, the ordinary things around them and post them to their blog each day for a week. While I may not post everyday, I’ve accepted Marie’s challenge. So, dear readers, this means you’ll be hearing from me a lot this week.

One of the places I took my friends, and my camera, was to Mission San Jose, an historic compound many of us locals take for granted. While it may have become commonplace for many, it is anything but ordinary. Mission San Jose was a walled community built in 1720, on the banks of the San Antonio River. To see it now, lovingly restored, it’s easy to imagine it as a bustling outpost on the Spanish frontier. Inside high stone walls, Franciscan missionaries worked to convert 350 indigenous Indians to Christianity, while outside the walls, residents built an aqueduct, tended crops, worked in the granary, raised livestock and defended themselves against marauding Apaches and Comanches.

Even though the Mission was at the very core of their ability to survive, I can’t help but wonder if the residents got so they took their Mission for granted? How quickly did they forget the hardships of living in thatch and mud structures, trying to survive on their own? After a while, it’s easy to take even the most splendid of surroundings for granted. They become commonplace and ordinary, making it easier for us to focus on their flaws and shortcomings.

This week, my camera will no longer be the thing that makes my purse heavy. Instead, it will go back to being a creative part of my heart and soul; the way I celebrate and separate the ordinary from the extraordinary.

Is there something, or someone, you’ve taken for granted? Perhaps it’s time to celebrate what’s become ordinary in your life, especially if it’s life itself.

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Breast Cancer Clinical Trials

Monday, August 20, 2012

Last week, Elly Cohen, Ph.D. gave me an online tour of As Program Director for the site, as well as Asst Professor at the University of California San Francisco, Department of Surgery (UCSF), Elly and her team have worked hard to develop a resource for those seeking further Stage IV breast cancer treatment.<PREVIEWEND> was originally based on a patient idea: Since many physicians don’t discuss clinical trials with their patients, the study wanted to know whether women could self-report their breast cancer history online (age, type of cancer, pre or post menopausal, bio marker status, mets/no mets and treatment to date), and match their history with an accurate clinical trial that suited their needs?

In 2008, the nationwide personalized matching service was launched as a collaborative research project between the National Cancer Institute and UCSF in hopes of reaching women who didn’t know about clinical trials. Since then, the system has been tested, retested and refined, then tested again, and site organizers continue to respond to user suggestions. While I haven’t personally gone on this site in search of a trial, the online tour Dr. Cohen gave me seems intuitive and easy to navigate.

Because not everyone wants to do the personalized matching service, the site offers an alternative that allows you to "See All Trials" and organize research studies by zip code. Patients can see trials nearest them and read what they’re about. It also gives trial location, a map and the trial coordinator along with their email and phone number. Users can also see all newly opened trials, even if they’re far from home. Another feature allows patients to enter their type and place of metastasis, filter out all trials that don’t pertain to them, then save them to the secure site and/or email them to their oncologist. The latest version of the site was launched in March 2012 and allows users to select a “QuickView” to browse by tumor type, including Triple Negative and Inflammatory Breast Cancer and trial type.

One of the hottest trials is the “Vaccine Therapy,” designed to harness the body’s immune system. Researchers hope vaccines will be good for those whose body’s are failing to respond to other treatment. Complementary and Alternative Medicine trials are also available. While clinical trial providers are careful not to recommend any of the trials listed as the way to go, since patients can email their doctors the studies they’ve found, providers hope this will begin a much needed dialog between patient and doctor about further treatment options.

When most of us hear the term “clinical trials,” we think about treatment trials for those who have no other treatment options, however, numerous trials are also looking at quality of life issues. One of these is “cold caps,” a refrigerated unit worn on the head that constricts the flow of chemo to the scalp in hopes of lessening hair loss. Other quality of life trials involve adding treatment agents to alleviate symptoms of neuropathy, and 30-minutes of radiation during surgery to remove the cancerous tumor, as opposed to up to six weeks of daily radiation after surgery. Still other trials are psychosocial studies about the side effects of treatment on the brain. will also email you if a new trial comes online that’s a fit for you. They also have a quarterly newsletter and new weekly articles posted on their Facebook page, so you might want to “Like” their FB page.

Since many of you are looking into further treatment for Stage IV breast cancer, I hope this site will be a valuable resource for you. Please let me know what you think of the site and if you join any of their clinical trials. Wishing you all God’s blessings.

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Will Komen Really Have New Leadership?

Sunday, August 12, 2012

©The New York Times

Who would have thought The New York Times would print one of my Twitter posts? I'm not an Ashton Kutcher or a Lady Gaga, whose every Twitter and Facebook message is monitored and scrutinized by the press. However, The New York Times and USAToday did see and respond to my Tweet about the controversial Nancy Brinker, soon to be ex-CEO of the organization she founded in name of her sister, Susan G. Komen. As my Tweet suggests, unlike Elvis, Ms. Brinker has not left the building. It seems as though she may just be playing musical chairs.<PREVIEWEND>

In what may be a delayed and long over due attempt to appease Komen’s critics, Ms. Brinker will be moving from CEO to a supposedly "lesser role" that focuses on strategy, global growth and fund-raising. Hasn’t she been doing that all along? It also seems as though she will be the decision maker on who becomes the new CEO. Hmm... In addition, Komen’s president, Liz Thompson, and two Komen board members announced they were leaving Komen, all moves that for many are too little, too late.

Nancy Brinker and her Komen organization have long been heated targets of breast cancer advocates worldwide, not to mention anti-abortion activists and supporters of Planned Parenthood. For anyone who doesn’t read the “pink stories,” Brinker and her organization’s decision to cut funding for breast cancer screening grants to Planned Parenthood caused many potential donors to put their checkbooks back in their wallets. Even before the Planned Parenthood debacle, Komen’s serial failure to make good decisions (unhealthy choices of funding partners like Kentucky Fried Chicken and Mike’s Hard Lemonade, not to mention the dismal amount of money that actually goes toward finding “the cure”) have caused Komen to repeatedly find itself teetering on the edge of it’s own pink ribbon.

In February I wrote a blog called, “Should Komen’s Nancy Brinker Step Down?” That was the first time I took off my journalist’s hat when writing about Komen. Prior to February, I reported the facts, with no editorializing, and gave them the benefit of the doubt until: Komen decided to address the breast cancer community via my blog and then didn’t engage, as promised, in a dialog with readers. Once again, Komen has handled yet another incident poorly, or perhaps we should say, “What incident has Komen handled well?”

While many think the recent position changes are a PR move, it seems like once again, Brinker’s lofty goal of finding a cure for breast cancer has turned into a three-ringed circus with what may be ego in the center ring. In February, I suggested:
“ order to rebuild their image, it’s crucial for Komen to have the support of breast cancer advocacy organizations and top breast cancer social media mavens. ...they must gather breast cancer bloggers into their fold, listen to our concerns and once again, gain our trust.”
If anyone doubts the power of Social Media, the millions of us out here in digital land have left organizations like Komen with no place to hide. Thank you Jennifer Preston at The New York Times and the always incredible Liz Szabo of USAToday for asking for my thoughts on the matter and for sharing them with the world.

The real story in the Komen soap opera shouldn’t be about poor choices, skepticism or ego. The real story is about the millions of breast cancer families who are devastated and shattered by this terrible disease. The ultimate story will be about the heroes who find a cure for this insidious destroyer of life and love.

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Komen and Women with Stage IV Breast Cancer

Sunday, July 22, 2012


In recent weeks, many of us in the breast cancer blogosphere, including me, have written about what the term “survivor” means to us. I even polled readers on’s Facebook page, but none of the responses or blogs have saddened me like this blog from my friend, Donna Peach. I'm reprinting it in hopes you’ll read it, and leave a comment that let’s Donna know you’re cheering for her, even though Komen might have been uncomfortable acknowledging her, and the existence of others with Stage IV breast cancer.

"Again, the Question: Who are Breast Cancer Survivors?" by Donna Peach
The word “survivor” in the world of cancer is one that is loosely used, misunderstood by most and loathed by many. When I was diagnosed, my oncology team told me that everyone with breast cancer is considered a survivor. I find that definition to be consistent within the medical community where they do not differentiate between those who are in remission and those who are in active treatment, regardless whether the treatment is for early stage or stage IV breast cancer.

After my remission went kaput, four years after my primary cancer, and I returned to active and strenuous treatment, I found that definitions in the lay population seemed to be different. Even among the populations that you might think would understand the term “survivor.” When I attended a Susan G. Komen event, the largest organization representing the world of survivorship in the land of breast cancer, I was a few months out from my diagnosis of bone metastasis, or stage IV, breast cancer. I had had extensive surgery on my back for the damage from the cancer, and it required me to use a walker and to wear a TLSO (thoraco-lumbo-sacral orthosis) brace. When I got to the site of the race, I asked a number of Komen volunteers and staff if there was a place for me to sign in or to go. They looked at me a bit oddly and responded to my statement that I was in treatment for mets, and they told me that the sign-in was “only for survivors” with a not-so-subtle tone of disbelief that I presented myself as a survivor. I felt a bit shell-shocked at, first, being at a breast cancer event of that magnitude and being told that I was not a survivor and, second, being made to feel uncomfortable because they seemed not to know what I was. They simply excluded me because they assumed I did not fit their impression of a survivor.<PREVIEWEND>

Still, I pursued my query. As I became inured to the responses I received, I became a bit more assertive. I said to one person, Well, really, don’t you think that if anyone is a survivor, it is women like me who are fighting to stay alive from mets: I got a blank stare. When it came time to participate in the so-called victory march where survivors run or walk a circuit to show that they have achieved the stardom of remission, more commonly called survivorship, I walked up to the folks at the entrance and simply told them that I was going to do the walk with my walker because I thought I deserved to be recognized as a survivor. They looked very uncomfortable but did not argue with me. After all, probably the last thing they wanted was to have a woman in a big back brace hobbling around their victory course and tainting their projection of the so-called survivor.

Throughout that event I was constantly amazed that no part of that huge Los Angeles style event included any recognition for the women who had metastasis and were in the throes of staying alive through treatment for the rest of their uncertain lives. How in the world does an organization like Komen leave out the thousands of women, and men, whose ranks will lose 40,000 every year and whose members never know when that fateful day will arrive.

That day lasted privately in my mind for a long time. I never even told the wonderful folks who sponsored Team Peaches and ran and raised money on my behalf because I never wanted them to feel any of the disappointment I felt with Komen. It was, after all, not a disappointment with the people who trained for the event and generously gave of themselves but for the breast cancer community who should know better and should be teaching others what survivorship means. It was the first time I realized such a disparity exists, but it made a lasting impression on me that some of us need to help define that word better. Do you define yourself as a survivor? Do you define yourself at all? How do you define others you know who are in remission and those who are living on the edge of uncertainty with metastases? Do you think we should have different labels or no labels?

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Do You Have Pink Rabies?

Sunday, July 08, 2012

• Zealous, fervent and fanatical when faced with consumer products displaying the pink breast cancer ribbon.

• Irrationally extreme in opinion or practice; furious or raging at corporations, especially those that manufacture products containing carcinogens and other harmful ingredients that support Komen for the Cure.

• Stop all purchases of products that contain carcinogens and bear the pink breast cancer ribbon.

• Stop all purchases of pink products except for those that openly disclose to whom and how much of the proceeds from the sale goes toward a known breast cancer cause.

• Do not purchase pink trinkets at the checkout counter (keychains, bottle openers, cheap jewelry, etc.), bearing the breast cancer ribbon. More than likely, no money will be donated to any breast cancer-related cause.

Do purchase pink products that allow you to designate which organizations you want your pink dollars to support, or write a check to the organizations yourself.

If symptoms persist, get rid of your credit cards, checkbook and cash until you come to your senses.<PREVIEWEND>

If all else fails, immediately call or email a breast cancer advocate for help.

Do this until the cause of breast cancer and the prevention, or the cure, is found.

• Excitability may occur, especially with companies that have no intention of donating a dime to breast cancer.

Do not become so obsessed with avoiding all pink products, or ranting about what’s wrong with them, that you fail to purchase products that contribute to the Dr. Susan Love Research Foundation or the Love/Avon Army of Women and their search for the cause and prevention of breast cancer.

Do not lump all breast cancer foundations and their leaders together with erroneous statements like, “When one name leads a foundation, the cult of ego begins.” Instead, consider that 98% of all foundations are led and/or funded by the person who’s name is on the foundation.

• If you “Think Before You Pink,” and urge everyone you know to do the same, the incidence of Pink Rabies will hopefully subside in our lifetime.

The pink marketing dollars’ issue will continue for as long as it takes for all of us to understand the pervasive depths of the problem. However, if we look hard enough, we can probably find something wrong with every product or corporation that funds breast cancer research. As breast cancer advocates, we must be careful that we don’t alienate ALL sources of funding. Every train runs on fuel, which costs money, and in the case of breast cancer research trains, a huge percentage of underwriters want visibility in exchange for their dollars.

I'm currently raising $1Million for a project I’m working on, and I’m here to tell you: Corporations want more than just a mention as a Sponsor, Underwriter or Charitable Contributor. They want a bigger “footprint.” And for those who think corporations should simply write a check, no strings attached, we need to remember that corporations are not in the “altruism” business. They’re in the business of selling their company’s goods and services. They have their own trains to run, and like everything else, they run on money. The Dr. Susan Love Research train is no exception, so let’s be careful we don’t derail them just because "evil corporate America" gives them money.

PS: For other blogs written about this topic in recent weeks, go to UneasyPink and ChemobrainFog.

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Another Flew Over the Cuckoo's Nest

Sunday, June 24, 2012

Recently the nurse from the dementia facility where mother lives called to say mother was complaining that her neck and shoulder hurt... a lot. To be on the safe side, the nurse had called an ambulance. What ensued was two days of Who’s on First?, the classic Abbott and Costello failure to communicate routine, with a touch of One Flew Over the Cuckoo’s Nest. As I drove like a wild woman the 40 minutes to the hospital, I vacillated back and forth from fearing the worst, to a steely resolve that I could deal with anything. Two days later, I was ready to strangle everyone involved.<PREVIEWEND>

Blood tests, x-rays and an MRI showed nothing was wrong with mother. She had not suffered a heart attack, but to be on the safe side, they would keep her overnight in the hospital. While neck and shoulder symptoms can signal heart problems, the nurse at the dementia facility was careful not to use the words “heart attack” with me or the ambulance drivers. Nevertheless, those two words dictated everything for the next two days.

Several hours after mother was admitted and settled into her room, I had to leave for a meeting. When I returned, it was obvious the nurse’s aide who'd been assigned to sit with her in my absence had run out of patience. “Thank you for coming!” the aide said. Her tone had a note of desperation. “Is this your mother? I’m afraid of her.” I learned the hospital staff had been unable to take mother’s blood pressure, hook her up to a heart monitor, give her medication, take her temperature, or get her to eat.

“I don’t trust her!” mother was hollering. “She’s trying to sell me something! You never know about people who just walk into your apartment uninvited!” When I explained the woman was a nurse’s aide who was there to help her, mother threw a cup of iced tea at me and said, "Well now she can help you!"

Dementia seems to bring out the worst in mother although even before dementia, mother was a difficult woman. Mother’s always walked a fine line between being a helpless needy victim to someone who delights in creating a scene. Nine months ago I stopped taking her shopping or out to lunch because of her public meltdowns. Her geriatrician says some dementia patients become agitated in unfamiliar environments, and this hospital visit was definitely one of those. It was becoming one of those environments for me as well.

Obsessed with unplugging the leads attached to her heart monitor, mother would tear them off as quickly as they were reattached. Each time the nurse reconnected them and told her not to touch them, mother began tearing them off, again, and would say, "Well I didn't remember what it was.” The last time, I reconnected the leads and explained it was a heart monitor. Mother tore them off, again, then said to me, "You do what you want with yours, and I’ll do what I want with mine!"

A cardiologist tells me he’s ordered a stress test. When I ask if mother’s had any evidence of a heart problem since the ambulance picked her up, he says no, but tells me mother wants a stress test. When I explain mother has dementia and can “present well,” but doesn’t know what’s going on, the cardiologist tells me he asked her if she had dementia, and she said “No.” When he asked if she wanted a stress test, she replied, “Yes. I want all the tests.” Based on mother’s response, the cardiologist had ordered a laundry list of more tests AND was prescribing morphine for when she returned to the dementia facility!

“Isn’t that right, m’am?” the cardiologist asked mother. “You want a stress test.”

Mother eyed him critically, then snorted like a horse. “You’re going to test me to see if I’m cuckoo. Well I’m not! She is,” mother said, pointing to me. Holding up a bra she’s pulled from the plastic bag containing her clothes, mother asked the cardiologist, “What have you done with my bra? You don’t really expect me to wear this do you?”

The cardiologist ignored mother's question and said the stress test had been scheduled for later that afternoon. Hello! What planet is this guy living on? My 91-year-old mother may “present well” for a short time, but that ship has already sailed.

“I think her pain's due to an arthritic shoulder she's had for years,” I said. “So if she has no evidence, of any kind, of heart disease, why are we doing more tests?”

“Well, she said she wanted them,” the cardiologist replied.

I follow the cardiologist into the hall where I cancel the stress test and the morphine. I understand the doctor was covering his backside, but if physicians have no discerning ability when evaluating patients, it makes me wonder to what degree those of us who are still "with it" must stay on top of what our doctors prescribe for us?

When I return to mother’s room, she’s asking a male nurse if they’ve had sex. "Have we had an affair? I haven’t had sex in a while, and I’ve never done drugs." My heart breaks for mother. She’s trying her best to make sense of a situation that is making less and less sense to me. I can only imagine how frightening and frustrating it must be for her.

This ordeal has been nothing short of a Who’s on First? routine. I’m angry mother was subjected to this and that I was locked into a nonsensical do loop that was difficult to extricate either one of us from. Every day I ask God to make me the daughter she needs, but it's days like this that make me wonder if I’m doing a good job? There are moments when I have to walk away because if I have these conversations much longer, I'm afraid I will become another “Who's on First?” and will join mother and the others who've already flown over the cuckoo's nest.

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Great Expectations When the Fat Lady Sings

Tuesday, June 05, 2012

Fernando Botero

This weekend my girlfriends and I saw The Very Best Marigold Hotel, a charming film full of characters with whom we can all identify. I loved this movie. I laughed and smiled throughout the whole film, only to break into tears as I left the theater. The film reminded me that our hopes and expectations don’t always happen the way we plan them, and that it’s not always over when the fat lady sings.

The Very Best Marigold Hotel dovetailed with a blog I read recently that suggested we should lower our expectations to keep ourselves from being disappointed. Had the characters in The Very Best Marigold Hotel loosened the reigns on their expectations, perhaps some of them wouldn’t have been disappointed in the hotel or with their lives. In reality, I disagree with the concept of lowered expectations. When we lower our expectations, it affects the way we see ourselves, and in turn, how others see us and how we allow them to treat us.<PREVIEWEND> If, however, we can't maintain high expectations, what if instead of lowering them, our expectations are neither good nor bad, but we give them the freedom to be whatever they're going to be? What if we live in the dictionary definition of "to wait in expectation" like a couple who are "expecting" a baby and who don't want to know the sex until it's born? They're expecting the event, not the outcome.

All of us encounter dozens of expectations everyday. They are the short paragraphs of life. To lower our expectations is to sentence ourselves to a life that’s missing the highs and lows, the very experiences that make life rich and rewarding. Our challenge is not just to cope with the short and unexpected paragraphs of life, but to string them together until we and our story thrives.

Life is relentless, the way it goes on, expecting us to jump back on board after health problems, job loss, divorce and death. While most of us can get back on track, staying there with cheerful purpose and intent is the hard part. In the beginning, our painful attempts are nothing more than aimless stabs in the dark to regain our zest for life, to establish new rhythms and pathways. In the beginning, most of us don’t do it authentically and wholeheartedly. Instead, we do just enough to convince ourselves and those around us that we’re trying, and that once again, we’ll be alright.

In The Very Best Marigold Hotel, Maggie Smith’s character asks Judy Dench, “What are you going to do now?”

“I’m not sure what I shall do,” Judy’s character says. “Nothing’s worked out quite as I expected.”

Maggie Smith pauses and then smiles and says, “Most things don’t, but sometimes, what happens instead is the good stuff.”

Where we are in life is as much imposed on us by circumstances out of our control as by our willingness to overcome them. As the manager of the Very Best Marigold Hotel says, “Everything will be alright in the end, and if it’s not alright, it’s not yet the end.” Perhaps that’s another way of saying it’s not over, even when the fat lady sings. There’s another act yet to come, and our job is to find the good stuff.

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Caregivers and End-Stage Cancer

Tuesday, May 22, 2012

©Brenda Coffee. All rights reserved.

Last week’s blog about the will to survive Stage IV cancer resonated with many of you. The desire to see our children grow up, as well as our curiosity about what lies around the bend, are powerful adjuncts to cancer treatment. For those who have or have had cancer, have you ever thought about how an “I’ll do anything” to hold onto the reins of life may affect your caregivers? I’m hesitant to mention this topic, but because it’s another important elephant in the room no one talks about, here goes...<PREVIEWEND>

Cancer caregivers are encouraged to take good care of themselves: eat properly, exercise, get plenty of sleep and take a break now and then. On the flip side, caregivers are often criticized if they’re perceived to be having a “good time” while their loved one is suffering or dying, or after their loved one dies.

Last week I mentioned my visit with Alana Stewart, friend and caregiver to a seriously ill Farrah Fawcett. In my opinion, Alana’s friendship knows no bounds. All you have to do is read her daily journal from that time, My Journey with Farrah, and you’ll see a woman who literally gave up her life, for nearly three years, to be by Farrah’s side.

During one of their numerous trips to Germany for Farrah’s treatments, at Farrah’s urging, Alana, a single unattached woman, began a relationship with an Italian man. Based on much of the criticism Alana received when her book was released, you would have thought she’d hogtied and bull-whipped Mother Theresa. People called her selfish and in general, unloaded on her because she dared to reenter the world of the living while her Stage IV friend lay suffering in a German hospital.

If you’ve ever been a Stage IV caregiver, particularly an end-stage caregiver, and I have, then you know that life as you know it can vanish in a blink. Caregivers find themselves walking a fine, and sometimes lonely line between life and death. Being an end-stage caregiver is physically, mentally and emotionally exhausting. Days are often spent waiting to hear from doctors or the results of the latest scans; getting something to make your loved one more comfortable or just watching them breathe. There’s little time to go out for a sandwich or to stand in the sun, and if you do, it feels surreal to be in the land of the living, and it often makes you feel guilty. It’s difficult to remain cheerful, positive and in control of yourself and the situation. Your thoughts can run the gambit from wondering, “How will I make it when they’re gone?” or “How much longer will they live?” to “How much longer can I do this?” These feelings aren’t good, bad or selfish. They're human.

My intent with this post is to let any Stage IV and end-stage caregivers, who can relate to any of these feelings, know they’re not alone. Coming to terms with the fact that we’re going to die is a brave, solitary experience. For end-stage caregivers, the loss of a loved one is a process that goes on long after their family member is gone.

Is holding on to the reins of life, at all costs, a natural part of the will to live? Should we consider our caregivers before we tighten the grips on the reigns, and if so, does this mean we're not survivors? I don’t know all the answers, but I felt compelled to ask the questions.

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