Slowing Down to the Speed of Life

Dr. Nicholas Vogelzang, a well-respected cancer researcher, conducted a study among cancer patients that found nearly 70% described fatigue as the worst side effect of chemotherapy. 

Fatigue is common with cancer treatments of surgery, chemotherapy, radiation, hormone therapy and biological therapies. But fatigue can also persist with post treatments too.  A recent study in women who had completed adjuvant chemotherapy for breast cancer demonstrated the extent of this problem. Over half reported significant fatigue at 6 months, and after a year 20% had not recovered. The biggest drug related culprit in women with breast cancer is Tamoxifen and other hormones such as the aromatase inhibitors like Arimidex – they can all cause fatigue.  

Well, no wonder I stay so tired.  I’ve had eight rounds of Adriamycin and Taxol and two major surgeries. I’m taking an oral inhibitor each day (Arimidex) and will for the next five years.  And this isn’t even taking into account my next surgery (scheduled for November 15^th) and my upcoming 30 rounds of radiation treatment.

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A few weeks ago I returned to work pretty much at my full-time pace – attending morning meetings, afternoon ones too; writing PR plans, attending events, writing print and web site copy, conference calls, telephone meetings, lunch meetings, more writing and more meetings.  Between all of this, I’m returning phone calls, and reading and responding to countless emails.

For those who know me, you know how much I love my job.  Let me say it again:  I LOVE MY JOB!  I feel very fortunate to have one of those jobs where I get up each day and am excited about the opportunities I have to change the world, work for great clients alongside terrific colleagues.  But I think that my return to work has sent an erroneous signal to those who love and care for me -  “She’s well!”  The response to my improved condition has been new invitations, and a few expectations to be involved, contribute, or simply just participate in the fun.  My problem is, I want to do it all and it’s very difficult for someone like me to say “no.” 

By the end of this past week, the whirlwind of activity had caught up with me.  I’m very tired, my body is screaming for rest, pain has returned to my arms and legs, and I’m finding it difficult to feel mentally relaxed and physically comfortable. 

In my life BC (before cancer), living the frantic pace wrought with pressures from the modern world – well, I was one of those freaks that this lifestyle created true bliss for me.  While my intentions were positive, my life was sometimes a mess – or at least my calendar looked that way.  For too long to remember, I have thrived on a sense of purpose, mission, and a checklist of tasks completed.  This way of life has always seemed quite normal, resulting in pet names from friends like “Peppy The Wonder Squirrel.”  If you don’t understand, I simply cannot explain.  It’s just the way some of us are created, or maybe it’s just the life we’ve created for ourselves. 

But the bottom line for me right now is this – My body is not feeling well and I simply must slow down. 

Last night my dear brother gave me some sage advice.  “Make a list of all that you’ve committed to over the next two weeks, then scratch off those that are not 100% necessary.” 

So today I’ve committed to slowing down to the speed of real life.  While living a frantic pace has brought me a sense of happiness, it can definitely take a toll on my health – and your health too!  And my health must become a priority.  Without sacrificing my work productivity or penchant for being with those I love, I’m going to try very hard to change my attitude, to slow down my mind and focus on the present moment, to maintain a calmer, healthier state of mind, to make fewer plans and have fewer expectations of myself outside of what has to be accomplished each day. 

Wish me luck.  I’m searching for a more peaceful and simpler lifestyle.  This is going to be tough. 

Celebrating Allyson

If you read this blog regularly, you know that in September I participated in Runway for a Cause, a very successful event sponsored by AY Magazine, organized by some terrific volunteers for the past ten years, which raises much needed funds for breast cancer programs at UAMS, CARTI and other local hospitals with programs for healing, service and outreach. 

You also know that this month my daughter Allyson, who lives in St. Louis, volunteers for the Siteman Cancer Center at Barnes-Jewish Hospital and Washington University School of Medicine.  Recently she helped organize a fabulous event, Celebrate Spot, a walk for dogs and their people to benefit breast cancer research and treatment at Siteman.  In fact, my puppy Abbey won the PAWtner Award at this event for every-diligence care of me during my own cancer plight. 

Over the past several weeks, Allyson has been hard at work putting together a proposal for the Siteman Cancer Center to raise more funds by hosting a similar runway fashion show.  She’s been working on names, researching possible venues, securing a magazine sponsor, putting together budgets and timelines, and figuring out the target audience and marketing strategies to make it a success.  Last night, Allyson and a few Mizzou girlfriends presented “Celebrate Style” to the Siteman team – and it was approved for funding and sponsorship.  She is ecstatic and excited about coordinating another fundraising event for their Young Women’s Breast Cancer Program.  

As her mother, I’m proud.  But as a life long volunteer, I’m simply amazed.  This is the work of a 23-year-old young woman who is using her talents to make a difference in the lives of others.  My friends might say that she’s a chip off the old block.  But let me tell you, she is so far beyond her mother and most other young women her age.  I may have been volunteering when I was 23, but I wasn’t dreaming about or organizing big events like this one.  No doubt she is mature and experienced beyond her years. 

Allyson is no stranger to community service.  I can remember one holiday season when both of my girls discovered that toy donations were almost nil at the Watershed Human & Community Development Center.  Each Christmas the girls volunteered there for Rev. Hezekiah Stewart, but this particular year was a tough one in terms of non-food donations.  The girls got out on the streets, on the phones, even did a radio and TV interview, to raise thousands of dollars to buy baby dolls and basketballs and more.  And then there was the time Allyson helped organized a dance for high school students with Down syndrome, with the Central High Civitan Club members serving as dance partners.  She and her friends came home exhausted from all the high-energy dancing, but with special memories about the great fun everyone had that night.  Just last year, Allyson, and a Journalism School colleague organized a Mizzou benefit concert that raised awareness and funds for the Haiti relief effort.  Even though the Westboro Baptist Church protested the concert, she had much to be proud of for all their success in such a short period of time.

And today, as a young professional, she is organizing a lavish style show in the big city of St. Louis to benefit breast cancer research and treatment. 

Today I am celebrating Allyson, who has once again shown her incredible compassion, her “can-do” spirit for making good things happen, her longtime compassion and understanding for human need.  If only the world had a few more young people, and old people too, like her.  She’s a true role model for the spirit of community service.  Reminds me of that wonderful Thoreau quote:  “One is not born into the world to do everything, but to do something.” 

Here’s to you, Allyson!  The world is a better place because you’re in it.  I’m so proud of you, and love you dearly. 

Hormones, Menopause & Breast Cancer

For decades women have been prescribed hormone replacement therapy (HRT) to compensate for the ones no longer produced after a hysterectomy or menopause. These drugs were developed to alleviate the onslaught of hot flashes, night sweats and other discomforts of menopause, and to generally help women remain “more youthful” – whatever that means. 

But in 2002, the federally funded Women’s Health Initiative revealed that the benefits of HRT were far outweighed by the increased risk of heart disease, stroke and breast cancer. 

It’s interesting to note that prior to the release of that study, more than 110 million HRT prescriptions were filled in the US.  By 2009, the number had plummeted by more than half, with only 40 million HRT prescriptions filled.  But what’s even more revealing is that between 2002 and 2009, breast cancer diagnoses finally began to drop, explaining why the number of breast cancer cases rose steadily for decades.  Hormone use, along with better detection procedures, obviously played a key role. 

In 2009, additional research revealed that women who took hormones were 70 percent more likely to die from lung cancer. 

A study published in today’s issue of the Journal of the American Medical Association confirms that postmenopausal women who take combined HRT (estrogen plus progestin) are at an increased risk of dying from breast cancer. 

The study of more than 12,000 women who were followed for about 11 years produced powerful evidence that deaths from breast cancer were more common among hormone-users.  The research found that women who took the combination of estrogen and progestin were more likely to have tumors that appeared to be larger, were often hard to treat and were more likely to have spread to their lymph nodes. But most important, their risk of death appeared elevated, with the research finding that hormone use appeared to double the relative risk of dying from breast cancer. 

Quoting from Dr. Hugh Taylor, chief of reproductive endocrinology at Yale University: 

"This really is a paradigm shift.  There was a whole group of people, including myself, who had been thinking hormone use was associated with an increased detection of breast cancer but not necessarily an increase risk of death from breast cancer. But this really nails it."

As they say, hindsight is 20/20.  I took hormone replacement therapy from 2000, the time of my hysterectomy, until the day I was diagnosed with breast cancer.  I can tell you this – I would much prefer hot flashes and night sweats to breast cancer, especially an aggressive breast cancer that also invaded my lymph nodes.  

Are you taking hormone replacement therapy?  If so, you should know that medical experts recommend that if women choose HRT, they take the lowest dose for the shortest duration – two to five years. Talk with your doctor about the new research findings, what is right for you, and ask for more information about alternative therapies that can help alleviate menopausal symptoms.  This is YOUR body!  Take control! 

Later this year, the Women’s Health Initiative will release additional results of the estrogen-only study (no progestin).  Estrogen only therapy is the preferred HRT treatment for women who, because of a hysterectomy, no longer have a uterus.

I wish I knew then what I know today.  

The Power of People & Pink

WOW – 46,000+ participants in Arkansas' Komen Race for the Cure yesterday.  It’s one of the largest Komen Races in the country; some say it’s the third largest.  And it felt like it. 

Normally I avoid crowds.  I haven’t been to Riverfest in years, no more fighting the throngs of folks who gather at the River for the Fourth of July fireworks.  I even do a pretty good job of staying away from large shopping centers, instead doing most of my shopping in my own neighborhood or smaller boutique centers.  But I am so glad that I put on my walking grear and registered to “race” yesterday (smile!).  There was actually no "racing" for me yesterday but I was proud that my legs, still rather weak, allowed me to conquer about a mile and a half.  All in all, it felt very good.

I’m not sure what it is about the Komen Race that creates such a rush of energy. 

Maybe it’s the 46,000 participants (plus observers) that fill the streets of downtown Little Rock, all there for one purpose – to eradicate breast cancer.  We even saw a slew of canoes as we crossed the bridge, the rowers all wearing pink as they paddled down the Arkansas River. 

Maybe it’s the sea of pink, more pink in the crowd than the red you’ll find at a Razorback game.  Pink shirts, pink wigs and hats, pink eyelashes and boas, pink balloons and even a few pink dogs and fire trucks.  It reminds you of a living ribbon of cotton candy – Pink Warriors everywhere.  It was touching to see so many people banding together for one cause. 

Or maybe it’s the music, wonderful and inspiring rock ‘n roll tunes that give you that feeling of “energize me” or “pump me up.”  I just love the loud speakers everywhere downtown, even though my friend Mary Ruth, who lives in a downtown condo, said it certainly makes for an early day for local residents. 

Maybe it’s all the funny t-shirts you can find that make you laugh, or at least bring a smile.  One crew in the Three Miles of Men walk wore camouflage shirts that said “Save The TaTas.”  Another camo shirt sported by women said, “Stop The War on My Rack.”  There were others:  “Save Second Base.”  “Bosom Buddies.”  “Big or Small - Save Then All.”  “Viva La Cure.”  “Fight Like A Girl,” and so many more.  Reading all the funny shirts is another reason to be downtown on race day. 

I’ve participated in the Komen Race in years past.  For two or three years I worked the race to recruit women who would help write letters to legislators to pass the Breast Cancer Act.  But that was work,  Yesterday was different, and I know why. 

For you see, at the Komen Race, survivors wear a different shade of pink shirt than the other participants.  And in big bold letters, the shirt reads S-U-R-V-I-V-O-R!   As I more closely observed the crowd this year, I was in complete awe of the number of SURVIVORS who were present – thousands of them.  I’ve known since February that I’m not alone in this fight, but the large number of survivor shirts made me question the epidemic proportions of this nasty breast cancer.  As survivors would pass one another on the street, there was an instant soulful connection made, an emotional bond that did not require words, only a sympathetic smile.  It may be the first time we’ve ever seen one another but there was an immediate feeling of empathy.  “I may not know you but I know what you’ve been through.”  For me,  no survivor was a stranger.  And for a seven month survivor like myself, they gave me hope, especially those who wrote on their backs how many years they have survived the battle. 

  

Yesterday I was happy to be at the Race with Anna-Lee, Tim, my brother Mike, dear friends Susan and Betsy, and a host of many other friends too (Allyson was in St. Louis but with us in spirit).  But I was especially humbled and honored to be at an event with so many women who were celebrating survivorship, or who were honoring loved ones who didn’t win the battle of cancer, but will forever be remembered by those they left behind. 

It’s unbelievable what Nancy Brinker has accomplished through one small promise to her sister, Susan Komen.  As my friend Cissy points out, during the month of October, the NFL wears pink shoes, the White House glows each night, firefighters dance on their painted pink fire trucks, and hundreds of products donate a part of the profits to Susan G. Komen.  It’s unbelievable how far Brinker has taken the breast cancer cause. 

Thank you Nancy Brinker, thank you Komen, and thank you to the 46,000+ women, men and children who gathered in downtown Little Rock yesterday morning to continue our fight to kick breast cancer's butt.  Woohoo!  

The Will To Survive: Lessons from 34 Chilean Miners

Did you watch the remarkable news coverage of the Chilean miners’ final rescue?  I sure did, being one of millions completely captivated as the 33 men were pulled to the surface one-by-one in a flawless ascent inside a capsule called Phoenix. 

The story began on August 5th when an estimated 700,000 tons of rock collapsed closing off the main section of the mineshaft.  It would be five days before the dust would settle, allowing the team to assess their situation.  And it wasn't good.  One half mile below, they were trapped in a large open space of about 1200 ft long.  Resources were limited, communications was not available and they would be sustained for more than two weeks with only a two-day supply of food.  It would be 17 longs days before they were able to establish any contact with the outside world. 

Then the 10-week wait for the rescue. But through it all, the miners remained hopeful, reminding themselves that all 33 survived a severe collapse.  As one miner said, “I realized I didn’t die.  This kept me from being so frightened.” 

The word “miracle” is often over-used these days, but for the miners and their families and friends, this successful rescue really does seem like a miracle.  However, it’s also a testament to the human spirit and the extraordinary will to survive against all odds. 

Extreme circumstances can bring out the best in the human Spirit – create an accompanying spirit of extreme resilience.  Unfortunately though, during tough times like this, there are some who immediately cling to a sense of defeat or hopelessness. 

The other day I learned about a woman with a recent diagnosis of Inflammatory Breast Cancer.  And the word is she has already given up.  Someone said to me, “I wish you could visit with her.”  And I would, except she has no interest in hearing from a survivor like me.  Evidently she has already given up.  

It is my hope that this woman, and all the other men, women and children fighting cancer, had the chance to watch the inspiring rescue of the Chilean miners.  In the weeks ahead, we should all read about the miners’ unfortunate but uplifting story of survival for 69 days, one half mile under ground, dark and humid and without the simple pleasures of life, isolated from those they love, and uncertain about their own destiny.  It could be this story of survival that might transform others from a feeling of catastrophic thinking to an empowered sense of hope. 

The Chilean miners taught us all a few good lessons about hope and the will to survive:  

·      Courage is the answer to defeating hopelessness and despair.  If you’re not wearing your courage, get out there quick and find it. 

·      Refuse to let hopelessness or fear's chaos upset the enduring bond with creation.  As one miner said, “There were actually 34 of us because God never left us down there alone.” 

·      Brotherly love is good.  Learn that there is magic in supporting one another, that energy and determination can be tenfold when we rally together.

·      When you are afraid, try singing songs with your friends.  If not Elvis, then find other songs that uplift or create laughter.

·      It is only through darkness that we can search for and appreciate the light. 

·      While hope and unity restore the soul, be aware that they can be found in the most unlikely places, including a dark copper mine 2000 feet underground.    

Never before have human beings survived being buried alive for such a long time.  That alone is a beautiful story.  But the miners’ incredible will to survive will remind me daily that while cancer may have stolen a part of my body, cancer will never take away my fighting spirit. 

Chi Chi Chi!  Le Le Le!  Viva Chile!  

Dr. Makhoul, Breast Cancer Awareness and Racing for a Cure

 As you can’t help but know that October is National Breast Cancer Awareness Month.  In fact, this year is the 26^th year that we as a nation have set aside this month to bring awareness, education and empowerment about breast cancer issues.  And while many great strides have been made in breast cancer awareness and treatment, there remains much to be accomplished in terms of finding a way to prevent this nasty disease from invading our lives – and that goes for all cancers too.  As Dr. Makhoul says, “There is no good cancer.  All cancers are bad.” 

Everybody knows how much I admire my brilliant oncologist Dr. Issam Makhoul.  With that said, I’m sharing with you a video interview with him by KTHV-Channel 11 from last October.  The good doctor tells us more about the importance of early detection, the dangers of hormone replacement therapy, the importance of Vitamin D, the sharp decline in breast cancer incidents, and the increased breast cancer cure rate.  Did you know that only 5% of breast cancers can be linked to predisposition?  Makhoul also talks about breast cancer in men.  Here's the link to the interview.  I know you will agree with me that Arkansas and UAMS are quite lucky to have this brilliant doctor treating and curing so many cancer patients.  

Here's another great web site for the National Breast Cancer Awareness Month organization.  I am also pleased to see that this organization has a separate link on the home page for more information about Inflammatory Breast Cancer.  We must do a better job of letting women know that not all breast cancers are lumps, and not all can be found by a mammogram.  

I guess life gets away from us sometimes.  While my friend Sue Farris is a role model for taking care of business, it was only today that I registered for Saturday’s Komen Race for the Cure.  Shame on me!  If you have not registered to be a participant, there is still time to do so, and you can do it online by clicking here.  

HOWEVER, if you don’t plan on making the race and have not yet made a contribution to this very worthwhile organization, maybe you’ll consider making a donation towards my race effort.  You can log onto my personal Komen Race page by clicking here.  To paraphrase Dr. Makhoul, “any donation is a good donation, no matter the size.” 

Tim and my brother will join me Saturday for what will be the 17^th Little Rock race.  While my legs are still not as strong as they used to be, I’m going to give this race my best shot.  And I'm certainly going to participate in the Survivor's Parade as it's only a few short blocks.  No matter the distance, my heart and soul will be totally immersed as a Komen Warrior supporting the cause to create a world without breast cancer.   

Celebrating Abbey

This weekend was spent in St. Louis, having a wonderful time with Allyson and Jeff.  The date had been set months ago as on Sunday we also participated in “Celebrate Spot” – a one-mile fun walk or a 5K walk past some of the most beautiful spots in the 1,300-acre urban park known as Forest Park.  The proceeds from Celebrate Spot benefit the Young Women’s Breast Cancer Program at Barnes-Jewish Hospital’s Siteman Cancer Center

The event was magnificent raising $72,000 for this very unique program that caters to women under age 40 diagnosed with breast cancer.  Allyson has been one of the many event volunteers, she and her friend Hannah working diligently on branding and merchandising efforts. 

Each year, Celebrate Spot and Nestlé Purina Company of St. Louis seek nominations and bestow The PAWtner Award to a canine hero who provided unique care, steadfast support and loving comfort to a breast cancer survivor during treatment and recovery.  Allyson nominated Abbey Rose, and yesterday Abbey became the 2010 PAWtner award winner.  Allyson’s heartfelt nomination tells the story and speaks for itself.

This last year, Abbey Rose was our family Christmas present.  We've always been cat people, but after my sister was diagnosed with cat allergies, my mother felt compelled to bring this adorable Pembroke Welch Corgi into our home.  Six weeks later, Mom was diagnosed with Inflammatory Breast Cancer – a very rare and invasive form of breast cancer.  Within a few weeks, she began undergoing an aggressive chemotherapy regime that would last for four months.  The side effects – extreme lethargy and bone pain – required her to work from home, but only when she wasn’t sleeping.  Because I was attending the University of Missouri, and my sister was busy with high school senior activities, Mom spent much of her treatment and recovery time at home alone. 

Don't get me wrong.  My Mom collects people and there was a constant stream of friends coming to visit, bring her meals, and provide some of the outside world to her as she was trying to heal at home.  It became very clear as to why Mom wanted Abbey; she had become her best friend and the perfect canine companion.

Mom's oncologist told her that she needed a Chemo Buddy to be present at each treatment, to help take her mind off of the "cocktail" of drugs that were being put inside her system.  While the Chemo Buddy plays a very important role, an overall Cancer Buddy at home is even more important, especially for a single adult.  Every cancer patient can benefit from having someone always there when they feel poorly, when they’re suffering from overwhelming lethargy, or even rejoicing in the nuggets of good news that might come their way.  That “someone”, her “cancer buddy”, has been her Corgi, Abbey Rose.    

Abbey stays close by Mom’s side, and is completely reliable when she needs a hug from a good friend.  Mom often told me that during her three-day sleeps following chemo treatments, she always woke up to find Abbey sleeping close by her side.  She said it felt as if Abbey were sucking out all the bad energies from her body.  And I’ve seen first-hand how she gives constant attention to Mom, caring for her as if she were a small puppy. 

Abbey also has helped keep Mom active with daily walks, entertains with her vivacious and playful personality, and keeps Mom’s spirit high with her constant affection and doggy kisses throughout the long days at home.  When Mom had her double mastectomy it was as if Abbey instantly knew what to do, and what not to do.  She normally settles in Mom's lap on the couch, but somehow Abbey knew to be careful of the lymphatic drains and bags’ so instead, she laid her head on Mom's hands or legs all day, continuing to lift her spirits.

Every time I come home I know exactly where I can find Abbey Rose; right by Mom's side.  Sometimes my sister and I joke that Mom loves Abbey more than she loves us now.  While that isn't true, we do know that Abbey Rose has become a special member of our family, and a loving companion for Mom throughout this very tough journey we call Cancer.  Now that my sister is in college at the University of Arkansas, and I'm working in St. Louis, I'm thankful that Mom has Abbey.  I'm thankful that Abbey will continue to lay her head on my Mom's hand, snuggle her when she's falling asleep, and greet her at the door with a wagging tail.  Abbey Rose exemplifies the perfect canine Cancer Buddy.

Thank you Allyson for understanding how much Abbey Rose has meant to me during my struggle and recovery this year.  She is that indescribable measure of love that I call my dog.  And thank you Abbey Rose for all that your friendship and companionship have meant to me.  

Cooking for Cancer

This week brother Mike sent me an article from USA Today about cooking and eating for the cancer patient.  Basically it is an extensive list of foods and recipes that provide nutrition and comfort (no nausea) for the patient battling cancer and the wretched chemotherapy treatments. 

I wasn’t surprised to read about the many recommended foods.  Heck, I’m now an expert at what works and what doesn’t work.  Can I just say I didn’t eat Mexican food for almost six months?  And sushi, once the love of my food life, wasn’t on the craving list either. 

Cream soups, chicken ‘n dumplings and mashed potatoes are a dream come true.  Deviled eggs, too.  And one of my all-time favorites – mac ‘n cheese. 

A friend of mine is currently going through the chemo regime, and just this week was asking for a recommendation for something good and hearty to eat without tempting the stomach.  My recommendation – the fabulous Lee Brother’s Macaroni & Cheese recipe. 

Tim and I loved this recipe long before the cancer diagnosis – my girls too, especially Anna-Lee.  But this decadent pasta with cheese took on a whole new meaning after February 17^th.  So, I’m sharing this recipe with my blog friends. 

Print it!  Make it!  Eat it!  You won’t be sorry, whether you have cancer, or not.  And you can’t go wrong with this fabulous cookbook either. 

Macaroni and Cheese

from The Lee Bros. Southern Cookbook

 serves 12 - total time: 1 hour

1 tablespoon plus 1 teaspoon kosher salt, plus more to taste

1 pound elbow macaroni

3 tablespoons unsalted butter

3 tablespoons all-purpose flour3 cups milk

3 bay leaves6 cups coarsely grated extra-sharp cheddar cheese (about 1 pound)

1/2 teaspoon freshly ground pepper, plus more to taste1 pound Gruyere or Swiss cheese, cut into 1/4-inch slices

Preheat the oven to 350F.

Fill a large pasta pot with water. Bring the water to a boil and add 1 tablespoon salt. Add the macaroni and cook until al dente. Drain and return to the pasta pot.In a medium saucepan, melt the butter. Add the flour and stir together until smooth. Stir for 3 minutes. Add the milk, bay leaves, and 1 teaspoon salt and stir until the sauce is thick enough to coat the back of a spoon, about 10 minutes. Add half of the cheddar cheese and stir until it is melted. Turn off the heat and season to taste with salt and pepper.

Pour the cheese sauce over the cooked pasta and stir until the sauce is distributed evenly in the pasta. Spread half of the macaroni and cheese in the bottom of a 3-quart casserole dish and flatten into an even layer. Sprinkle half of the remaining cheddar on top, then cover with half of the Gruyere. Add the rest of the pasta, flattening into an even layer, then cover with the remaining cheddar then the remaining Gruyere.

Bake in the middle of the preheated oven until hot and bubbly, about 30 minutes. If desired, transfer to the top rack during the last 5 minutes to brown the top.  Serve immediately.

Living Beyond Reality

Monday, October 4

Okay – he said it.  He told the truth. 

My oncologist was asked in the television interview, “What are the chances of recurrence with Inflammatory Breast Cancer.”

His answer:  “Quite high.”

I’m sitting there with him in the room.  And I knew that this was probably the answer, but I had just never asked.  And, of course, Dr. Makhoul had to tell the truth or he would have jeopardized his credibility, looked less than brilliant to other cancer colleagues. 

“How high,” I wanted to ask.  But I didn’t. 

Tuesday, October 5

I think I’ll just keep myself very busy, try to pretend I didn’t hear that yesterday. Maybe if I forget about it, the reality will go away, disappear like a quick bolt of lightening.  As Katie Scarlet once said, “I can't think about that right now. If I do, I'll go crazy. I'll think about that tomorrow.”

Wednesday, October 6

Damn the Internet!  It’s far too easy to find out just about anything you want to know.  Remember when you had to go to a public or medical library to read about disease? 

Today I went online, navigated straight to Google, entered “recurrence inflammatory breast cancer.”  Lots of articles about IBC with mentions of a “high chance of recurrence.”  Again, how high?

And then I came across this clinical research data from M.D. Anderson Cancer Center in Houston.

Abstract

BACKGROUND: Inflammatory breast cancer (IBC) is the most aggressive manifestation of primary breast cancer. The authors compared the prognostic features of IBC and non-IBC locally advanced breast cancer (LABC) to gain insight into the biology of this disease entity.

METHODS: This retrospective analysis consisted of 1071 patients, comprising 240 patients with IBC and 831 patients with non-IBC LABC who were enrolled in 10 consecutive clinical trials (5 from each disease group). All patients received similar multidisciplinary treatment. The authors measured time to disease recurrence for each individual site from the start of treatment to the date of disease recurrence or last follow-up (recurrence-free survival) and overall survival rates to the date of last follow-up or death.

RESULTS: The median follow-up period was 69 months (range, 1-367 months). Pathologically complete response rates were 13.9% and 11.7% in the IBC and non-IBC LABC groups, respectively (P = .42). The 5-year estimates of cumulative incidence of recurrence were 64.8 % and 43.4% (P < .0001), respectively, for IBC and non-IBC LABC. IBC had significantly higher cumulative incidence of locoregional recurrence and distant soft-tissue and bone disease. The 5-year overall survival (OS) rate was 40.5% for the IBC group (95% CI, 34.5%-47.4%) and 63.2% for the non-IBC LABC group (95% CI, 60.0%-66.6%; P < .0001).

CONCLUSIONS: IBC was associated with a worse prognosis and a distinctive pattern of early recurrence compared with LABC. These data suggested that investigating factors affecting "homing" of cancer cells may provide novel treatment strategies for IBC.

Sixty-five percent recurrence rate??  Seriously?  Okay, not such good news.  But this is the reality, even if it creates fear, uncertainty and heartache.  But living in reality is much better than living in fantasy. 

But hey, I’ve beat the odds once, and I certainly plan on doing it again.  Now, for a game plan.  I’m going to have to take some time to figure this one out.  But the goal must certainly be living BEYOND reality.