A Mother and her Two Daughters

30 April 2010

UPDATE - The Perils of Side Effects

Isn’t it amazing how dear friends and good music can put a big smile on your heart.  Last night my lovely colleague Jim – a.k.a. Buck – invited me for a pickin’ and grinin’ session in the "garage" (clarification:  a very fancy one in the Heights complete with carpet, a kitchen and central air) of his longtime rock ‘n roll partner Dent.  And what a fun music session it was.   Three incredibly talented guitar players entertaining us with favorite tunes from some of the best music legends of bygone eras.  It was grand fun for us girl, which also included Caroline and Charlotte. 

I’m keeping that music in my heart today as this morning I woke up at 4 a.m. again plagued with mouth sores.  I guess they call them sores for a reason - OUCH!  I’m at home waiting on a call from the UAMS oncology clinic.  Last time this happened I ended up in the ER, was terribly neutropenic and only two days away from a 48-hour hospital stay.  I’m hoping that this won’t be the case today.  I’ll keep you posted.  

UPDATE:
Mouth sores not good, white blood count low, probably a little on the dehydrated side.  But the doctors at UAMS are amazing.  I'm back on another drug that should help take care of all this, along with orders from the doc to stay home, get plenty of rest, drink lots of water.  I'm already feeling better.  

28 April 2010

The Wise Men and Women of UAMS

If I had hair, it would still be standing on end.  For a cancer patient like me, this is the kind of story that makes you cry tears of joy that continues to provide hope.

This morning my friend Kate sent me an email that was forwarded to her.  The email was originally sent by a man who lives here in Little Rock.  His name is Robby, a well-known lawyer here in town.  This is his story. 

Several weeks ago, Robby left the renowned Mayo Clinic with the verdict of terminal, incurable and untreatable cancer – esophageal cancer that had metastasized to the lymph system, the general circulatory system and was showing signs that it had also spread to the adrenal nodes, if not other locations too.  Mayo categorized his treatment as Palliative Care.  For those not familiar with this level of treatment, it’s the very last verdict you want to hear.  It’s essentially hospice care, pain management until death with no plan for curing, delaying or reversing the disease.  Mayo told Robby that he might have six months to live. 

I’m uncertain about the course of events; however, this is where UAMS and three brilliant physicians enter the picture, now affectionately referred to by Robby as The Three Wise Men – Doctors James Suen, Jose Penagaricano and Issam Makhoul. 

Robby was presented with a promise by this team of Wise Men that he says he couldn’t refuse.  The promise was this:  If you will leave the Mayo Clinic and move back to Little Rock and exactly follow our plan of treatment, we will assure you years of life. 

The option was simple:  dying within six months or years of life just by changing institutions?  

Robby returned to Little Rock almost four weeks ago.  He says that from the minute he stepped into UAMS, he was overwhelmed with the Can Do spirit of this medical team of winners – simply a positive attitude of high performance.  

While battling “incurable” and metastasized esophageal cancer hasn’t been the easiest fight of his life, it has been a much better fight than sitting in pain management waiting to die.
Yesterday Dr. Makhoul shared with Robby his pathology report for his first few weeks of treatment.  According to the good doctor, Robby’s red blood cells, white blood cells, platelets, bone marrow and all other detectable blood tests indicate that he is ABOVE NORMAL and in good health.  In other words, the blood results are not that of a dying man, as Mayo had left it.  Instead, his treatment is exceeding every expectation by quantum numbers.  Even Dr. Makhoul was astonished telling Robby that he had never seen such progress in a person experiencing the last and final stages of terminal cancer.

As Robby says, “Make no mistake, I am still sick.  I still have a tumor around my esophagus, I still have swollen lymph glands, and I am still in treatment and will be so for 17 more weeks.  But what this means is very important.  It means that I have in place the tools to cure this disease.”

Way to go UAMS!  Again, I say, if you have to have the battle of cancer, you couldn’t be in a better place than in Arkansas.  UAMS is truly a place where medical professionals visualize a world without a cancer.  This story warms my heart, gives me hope, assures me that I have the right medical team right here at home working for me! 

Today is Robby’s birthday.  And to him I say, “Happy Birthday and Congratulations Robby!  Keep fighting the tough fight, keep up your good work!  Me and you and UAMS -- we're going to make life happen."  

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And a P.S. for friends and family:  In case you forgot, Dr. Issam Makhoul is also my oncologist.  Lucky me, huh?  

27 April 2010

WARNING: LONG POST BY CANCER LADY ON A RAMPAGE


The other day I had lunch with my friend Ellen.  When I’m with her, the world always seems to be a better place for me, because she understands it all.  Ellen and I live very parallel lives.  She’s the mother of two daughters, she’s in the media business, AND she’s a nine-year survivor of Inflammatory Breast Cancer.  Ellen completely understands my Cancer World. 

She understands the fear of a bad diagnosis, living with not so great chances for five-year survival, the pain and agony of another chemotherapy treatment.  As one cancer survivor said, “This not a place you want to live, or visit or even pass through.  It takes a special kind of brave.” 

Over lunch, Ellen and I had just confessed a few things to one another.  

First, that we’re not really into having pity parties for ourselves, even though we’ve had a few of our own during some pretty private moments.  We reminisced about the first days following our diagnosis of Inflammatory Breast Cancer, when we discovered our chances for five-year survival, when we faced the terrible unknowns about the fight ahead.  We remembered thinking that chemotherapy couldn't be as bad as what they say, and then finding out that nobody is excluded from the terrible side effect.  But for the two of us, we have mostly had those pitiful moments alone. 

Second, we also confess that even though this is some tough stuff, we prefer to spend time with people who make us laugh, give us positive juju, who help us get our cluttered minds off something other than cancer, chemo and the fight of our lives.  We LOVE to be with people who recognize us for the smart women we still are, that want our advice and counsel and remember that our professional skills and talents are still inside of us.  Even though we may be fighting cancer, we are more than just a cancer victim!  We still have the right stuff.  

After a wonderful lunch meeting, we were leaving the restaurant when a woman I know stopped me.  Here is the total conversation:

Woman:            “Are you having a new challenge in your life?” 
Me:                      “Well, yes I am.  I’m battling a little cancer right now.” 
Woman:            “I’m so sorry to hear that.  What kind of cancer?”
Me:                      “I have breast cancer.”
Woman:            “Oh goodness.  That won’t be a problem.  Everybody gets through breast cancer these days.” 

HELLO??  DID YOU JUST REALLY SAY THAT TO ME?  THIS IS NOT A PROBLEM?  I HAVE CANCER, LADY!  DID YOU HEAR ME – CANCER!!  THE BIG C!! 

Even though the death rates are declining, 40,000+ women in America will die from breast cancer this year.  And even for those of us who don’t plan on dying, who are fighting like hell to beat this ugly disease, we are forced to fill our bodies with toxic chemicals that change our entire world.  We lose our hair, even our eyelashes.  We take pills every day that tackle nausea, fungus, diarrhea, depression and more.  Our body weight is a roller coaster as we lose pounds from vomiting or the lack of eating, and then we gain a few more from the doctor-prescribed steroids following chemotherapy.  We have a list a mile long of new rules of things to do and not do in our lives.  We are forced to remove ourselves from large crowds, give up gardening, and eliminate other things in our lives that we love. With negative impacts to our joints and muscles, we hope that today is not the day that we’ll fall off the curb in front of others to see.  We have countless doctor appointments and tests and infusion appointments, and some of us even spend days in the hospital battling raging fevers and infections in our bodies.  We pass old friends and colleagues in restaurants and stores who don’t smile back because they don’t even recognize us anymore!  And at the end of the day, we only hope that we will have the strength and stamina tomorrow so that we can attend our daughter’s graduation or a dear friend’s wedding.

THIS WON’T BE A PROBLEM??  When was the last time you battled cancer lady – any cancer?  This is not your common cold or a stomach virus!  THIS IS CANCER LADY!!  AND ANY CANCER IS TOUGH STUFF!! 

Okay – so I didn’t really say any of these things to her.  But Ellen and I sure felt all of this inside our minds.  But we were raised better; we were told by our mothers to always be polite, especially in public.  As I stood there and listened to her, I was reminded of the mad lady at the McDonald’s restaurant in Kansas City who didn’t like her hamburger and was refused a refund.  


Even though I proudly strive each day for the power of positive thinking, I’ve been thinking about her comments all day long.  I never wanted to say all those things to her; she didn’t intend any harm.  What I really had hoped for is that she might “get it.” 

She reminded me of another friend I saw recently who said to me: “You’re a tough woman and you’re going to be fine.” 

FINE??  I’M GOING TO BE FINE?  WHO TOLD YOU THAT??  SINCE WHEN DID YOU BECOME MY DOCTOR? 

So, what’s the fine line between NOT wanting a pity party versus wanting friends and acquaintances to understand?  It has to be something between a doom and gloom attitude versus acting like I’ve got a bad case of the flu that will go away soon. 

Maybe it’s this:  Don’t try to diagnose me or predict my cancer future. Give me positive thoughts, acknowledge my resilience and strength, but also recognize the incredible challenges right now.  Put your arms around me and just tell me you’re sorry and that you love me.  You really don’t have to say much.  Just let me know that you care. 

In the communications business, we always ask ourselves, “What is the call to action?”  Well, my call to action is to survive this cancer and LIVE for many years.  That’s the plan.  But in the meantime, THIS IS CANCER!  THIS IS THE BIG LEAGUES!  Just hold my hand, hug my neck, let me know that you care and help carry me through. 

Thank you for letting me vent.  I feel better now.  I warned you . . .

24 April 2010

Lessons from our Lovely Children



How quickly our children grow up.  For me, this is a monumental year with two daughters graduating – one from the University of Missouri, the other from Little Rock Christian Academy.  One will leave college for the big world of life; the other will begin college this fall.  And tonight is one of those senior high milestones we call “the prom.”  There is nothing much more fun than to help you daughter get ready for a special night like the prom. 

Today Anna-Lee and I began the day early with our first stop to buy a new handbag.  While Anna-Lee went to have a pedicure, my dear friend Jan took me to run a few more “prom errands” – picking up boutonni√®res, and purchasing a fabric steamer to get the beautiful blue prom dress wrinkle-free.  We met back at the house, and then it was off to GloTan for her final tan package, then to the Belk Clinique counter for a make-up makeover.  From there we went to have her hair fixed.  What a day – so much to get done.  And by the time we got back home, the curse of chemo had hit me hard.  I now have 100 degrees in fever.  Not good, especially since the day’s schedule was not yet complete. 

The plan was for several of us moms to be at Megan’s home to watch our girls get ready, to be there when their dates picked them up.   After that the LRCA tradition is to have photographs made by the Hickory Hills Bridge.  Parents have rented a trolley for transportation tonight, so the plan was to follow the trolley by caravan to Pavilion in the Park to take more photographs as the seniors enter the atrium for their dinner and prom dance. 

But tonight, I will not be there.  After taking my temperature I cried knowing that the wisest course of action was to stay home, get my fever down, to keep myself from having a trip to the hospital.  My Mom friend Amy was at the house, and she agreed.  How upsetting for a mom like me . . . until Anna-Lee spoke and made me realize how thoughtful and mature she really is. 

She said to me, “Mother, it’s okay.  You have cancer.  It changes the game plan, but everything is fine.  You spent the entire day helping me get ready.  And you’ve never missed an event like this ever before.  You need to stay home and take care of yourself.  It’s going to be okay.  I love you."  

Out of the mouths of babes, as we say.  Anna-Lee is so awesome, so much more mature at her age than I ever was.  When I was 17-years-old, I'm certain that it was all about me, never about my mother.  So I’ll sit here tonight, eat my homemade Matzah Ball soup from Richard and Sheila, and remind myself of how blessed I am to have a daughter like Anna-Lee with such a beautiful heart, a daughter who teaches ME a few lessons about love and caring from time to time.

I love you Anna-Lee.  Have fun tonight, and what a wonderful life you have to look forward to.  Thank you for being such an incredible young woman, such a terrific daughter.  I am one lucky Mom!!  

A Promise for A Cure



Two sisters – Susan Komen and Nancy Brinker.  Both were raised in Illinois, and in the late 1970s, Susan was still living in Peoria with Nancy living and working in Dallas, TX.  During one of their almost daily telephone conversations, Susan told Nancy she had found a lump in her breast.  Throughout the next three years, Nancy would spend much time in Peoria to be with her sister as she began seeking treatment, which included chemotherapy, radiation and nine operations, only to die three years after her diagnosis.  In 1980, as Susan Komen lay on her deathbed, she asked her sister to do something so other women would not suffer her fate.  

In 1982, Nancy Brinker, armed with $200, a typewriter and a list of names, gathered almost 20 friends in her Dallas living room to establish the Susan G. Komen Breast Cancer Foundation.  In 1983 they would launch the first Race for the Cure in Dallas. 

Since that time, the nonprofit has raised over $1.5 billion for research, education and health services, making it the largest breast cancer charity in the world.  Today, the Susan G. Komen for the Cure has more than 75,000 volunteers nationwide, 122 affiliates in the United States, and 3 affiliates in other countries. The organization has resulted in the development of many new treatment options and a higher quality of life overall for breast cancer patients and long-term survivors.  Today the Komen mission is simply stated as this:  “To end breast cancer forever” – s tough mission as breast cancer is the leading cause of cancer deaths among women worldwide.  Someone dies of breast cancer every 75 seconds. 

While the Susan G. Komen Foundation began as a story of loss, today it is a story of hope and survival for millions of women across the globe.  With more than 500,000 women dying from breast cancer each year, we all share personal and passionate stories of how this ugly disease has ravaged lives – either our own, a sister or mother, a daughter or friend. 

Tomorrow in Northwest Arkansas, more than 16,000 women will help fulfill the promise made by Nancy Brinker to her sister Susan G. Komen.  And tonight, my longtime college buddy Dian sends me this photograph, preparing for her participation in the 12th Annual Ozark Affiliate Race for the Cure.  Love you Dian, and thank you for running in my honor.  And many thanks to all the women in Northwest Arkansas who tomorrow will honor a promise, race for hope, and make their own contribution to ending breast cancer forever.  You go sisters!! 

22 April 2010

A Day of Reflection


This morning I rode with friends to McCrory, Arkansas.  We were there to be with a dear friend and colleague, Denver, who buried his mother after a very unexpected death.  In his words, her passing was too fast and her life too short.  President Clinton was there to also make some public remarks about this grand lady’s life.  And his words have been with me all the day. 

He talked about how human life is a gift from God, our personal responsibility to make the best of it.  He shared some beautiful and a few funny stories about Ann Peacock, about how she shared her love and life and talents and resources with so many – lovely stories that she will forever be remembered by.  But the former President went on to remind us that in the end, when eternal life begins, we have to give our human life back.   And for those who have lived a meaningful life that has been filled with love and richly shared with so many, giving it back makes it all the more difficult for those who are left behind. 

It was a difficult day for Ann’s family and friends as we gathered in that beautiful country church, to see her life given back so unexpectedly.  But her life as a wife, and mother and heartfelt friend and neighbor – she leaves that legacy behind, never to be taken away by death. 

After the ride to McCrory and back, I spent the afternoon resting, with a few naps here and there.  And then Mica and Greg came by with some delicious homemade chicken noodle soup AND my very favorite meringue and chocolate chip cookies.  Tim added my favorite grilled cheese sandwich, meaning a very good dinner to accompany an almost quiet night.

Do you ever find yourself just having a day of reflection?  Well, today has been that day for me.  So many reminders about the gift of life, the beauty of love between life partners and children and friends, the goodness to strangers, the sense of loss when others leave us behind to continue our own journey. 

I am very tired.  This always happens right after the chemo treatments.  So, tonight I will close this post with my favorite prayer – the Prayer of St. Francis:

Lord, make me an instrument of Your peace. Where there is hatred let me sow love.  Where there is injury let me sow pardon.  Where there is doubt let me sow faith.  Where there is despair let me give hope.  Where there is darkness let me give light.  Where there is sadness let me give joy. O Divine Master, grant that I may not try to be comforted but to comfort, not try to be understood but to understand, not try to be loved but to love. Because it is in giving that we receive, it is in forgiving that we are forgiven, and it is in dying that we are born to eternal life.


21 April 2010

Four Down, Four More To Go

Tuesday marked chemo treatment #4.  That means four down and four more to go before my surgery.  My doctor continues to believe that I’m doing very well, responding to the chemotherapy.  I just feel it in my bones that this is all going to end well, that in late 2010 or 2011 I will move myself into the “survivor” category.   I hope to be just like Mom, who is out in California this week visiting with her forever friends from high school – Shirley, Jan and Marlis.  Allyson and Anna-Lee like to call them “The Golden Girls.”  At age 74, they have seldom missed a year of spending a week together just enjoying life.  They are my role models for girls having great fun!! 

A few details from the day:
  • The first four treatments have been a combination of Adriamycin and Cyclophosphamide, followed by an injection of Neulasta to help me fight the white blood cell deficiency and strengthen my bone marrow and keep it healthy.  This chemo treatment is very powerful but has lots of dangerous side effects.  The FDA will only allow patients to have so much of it as it is also can be quite damaging to the heart. 
  • The next four chemotherapy treatments will be a drug called Taxol. It comes with its own set of side effects, mostly bone and muscle pain.  Maybe I will get lucky and not experience this, just as I experienced very little nausea during the first four treatments. 
  • My next four treatments will mean longer days.  Each day begins with about 90 minutes in the lab for blood tests, then a visit with Dr. Makhoul, and finally they administer the chemotherapy in the Infusion Center.  Because the chemo I’ve been on only takes about 60 to 90 minutes to administer, most days I leave UAMS about 3:00 pm.  However, the new treatment takes THREE HOURS to administer.  I guess that means more reading materials and a stronger battery for my laptop. 

Dr. Makhoul has scheduled my next treatment for May 4th, AND I will also visit with my surgeon, Dr. Suzanne Klimberg.  At that time we will discuss having my surgery in July.  We are definitely making progress!!  

19 April 2010

What I Know About Cancer at the Two-Month Mark


Saturday marked my two-month anniversary in terms of my cancer diagnosis.  Honestly, this has been an incredibly long 60 days with much to do, so many new things to learn, many new life experiences and reflections.  As I told a friend yesterday, writing this journal has been very therapeutic, as it allows me to put each day and this journey in better perspective.  So, today I decided to reflect about all that I have learned so far about cancer and the battle to overcome it. 

Lesson #1:  Hearing the “C” word is a very frightening moment, one to never be forgotten.  It conjures up a bevy of emotions – shock, depression, anger, despair, paralyzing fear and disorientation.  But through the love of friends and faith in a higher power, the cancer fight also has the ability to create incredible strength to survive, and a spiritual connection with life that is difficult to describe. 

Lesson #2:  Cancer can be very mean and ugly.  As one friend said, she’s learned that it’s more than chemo and wigs.  To successfully wage the war, it requires powerful medicines and unattractive suffering.  But in the end, we all hang on to the hope that the battle is only temporary, that we will be victorious and life will be kind to us again. 

Lesson #3:  While cancer can be very ugly, I continue to be amazed and reminded about the beauty of friends, and even strangers.  The love of friends, the care from my community, the prayers and good wishes from those afar – it is a testament to the true goodness of mankind.  Never forget that we all belong to each other. 

Lesson #4:  Entering the world of cancer is somewhat like deciding to learn Chinese – it’s an entirely different language.  I have spent hours researching “the language” and I still feel like a rooky.  But through reading and asking questions, anyone can become somewhat of an expert and in better control over the many decisions presented by your medical team. 

Lesson #5:  Speaking of your medical team – it doesn’t matter how strong you are, or how determined you feel to cure your body of cancer.  The number one ingredient to a successful fight is a brilliant and experienced medical team.  You may possess a strong spirit, but you can’t win this war with spirit alone.  If cancer enters your life, the medical and treatment team is the number one issue in terms of survival. 

Lesson #6:  I hold much regret that in my past, I simply did not fully comprehend what other cancer patients were experiencing – until cancer rocked my world.  In my future, I commit to being there, being more of a friend to others who find themselves battling this nasty disease. 

Lesson #7:  Cancer cannot take away hope or faith or courage or spirit.  We are the only ones who can extinguish these lifelines of emotional support.  Hold on tight, believe in yourself and your medical team, and surround yourself with all things meaningful and encouraging.  Cancer or no cancer, each one of us has the opportunity to control our spiritual and emotional destiny.  Cancer does not have to take that away from you.  

Because this is only month #2, my journey has only begun. I’m sure along the way I will continue to become wiser and learn more lessons.  If that holds true, I will continue to share . . . 

17 April 2010

Cancer Blogger Takes The Weekend Off

As I said once before, my friend Sheila said that she feels a bit uneasy when I skip a day from blogging.  With that said, I'm letting friends and family know that I've decided to take the weekend off.  Because this is the weekend before Tuesday's chemo treatment, I've got a little more energy than I normally do.  So, I have joined a few of the Hendrix Alumni Weekend activities.  Today I went with Jim and Rosi to hear Dr. Charles Chappell's Last Lecture - and it was oh so good.  We also toured the new student center, went to the bookstore to buy a few t-shirts, etc.  Afterwards we headed to Stoby's for some cheese dip and burgers. I'm at home now, after taking a nice nap, and waiting on my friend Jay who has flown in from Dallas -- naturally a delayed flight.  We're then heading for Jan's home to enjoy an evening with longtime friends.  In the morning, Jim and Henry will cook brunch for a few of us at my house.

I'm having so much fun seeing so many friends from long ago.  That means several naps to get my energy back up, and no time for writing.  I know you'll understand.  All is well, I'm just pushing myself to the edge this weekend, and blogging just isn't working into my schedule right now.

Love you all,
Stacy

16 April 2010

The Economics of Cancer


Because today is “tax day” it seems only appropriate to have money on the mind; and today I did.  After emailing Bo the very last piece of information he needed to finalize my tax package, I decided to do a little research on the economics of cancer.  Here is what I discovered. 
·      Cancer is a very common life threatening disease.  One in three people will develop some form of cancer, while 1 in 4 will die from the disease.  In fact, cancer is expected to become the nation’s #1 cause of death within the decade, surpassing heart disease. 
·      Cancer treatments and diagnostics are increasingly costly.  In fact, the average cost to produce a new cancer drug ready for FDA review is approximately $1 BILLION.  Unfortunately, only 8% of these new drugs are given final FDA approval. 
·      While the United States spends $2 TRILLION on healthcare per year (2007), we spent $89 BILLION for direct medical costs to treat cancer.  If we factor in the indirect costs, the total costs for treating cancer in America are at $219 BILLION. 
·      Cancer drugs account for 10% of health care spending. 

That’s lots of money for only one disease.  But here’s the disappointing news.  The U.S. government has doled out more than $75 BILLION for oncology research since President Richard Nixon declared his War on Cancer in 1971.  Investment and outlays by the pharmaceutical industry have been far greater.  Yet the death rate from cancer has dropped by only 7% in the past three decades, with most of that progress in the last few years. 

Then there is the debacle found within the Food & Drug Administration – far too much to write about today.  More on that later . . .

Cancer Costs for Cancer Patients
While the overall cost for treating a typical breast cancer will top $50,000 or even $100,000, the total bill for breast cancer treatment widely varies by the cancer diagnosis and treatment required.  In my case, my total costs for hospital care and cancer treatment are coming close to exceeding the “typical costs.”  And remember, I’m only two months into my diagnosis, have completed only 3 out of 8 chemo treatments, have still not had surgery.  Some might say, “that’s too much.”  And I say, “THIS IS MY LIFE, I have insurance, and it’s none of your business.” 

But here’s more startling news:  1 in 5 cancer patients WITH INSURANCE will use up all or most of their savings during the course of treatment. 

Individual patients are increasingly feeling the cost of cancer through insurance premiums, co-pays, co-insurance, tiered formularies, and Part D donut holes.  Due to the mounting costs, patients are making cancer treatment decisions based on out-of-pocket expenses.  How unfortunate.  In fact, a survey conducted by USA Today and the Harvard School of Public Health found that 33 percent of cancer patients have trouble paying medical bills and 43 percent report skipping treatments or not filling prescriptions because of the cost.  For millions of people with cancer, there is little hope when the costs of treatment are more than they can afford

As I continued my research on this topic, I realized that entire books have been written about the costs of cancer – to society and to the individual patients.  And today I’m not up for writing a book, especially one on anything to do with economics.  So I will close this post with this:

First – always participate in any kind of cancer screening that is available in your community.  Without a doubt, detecting cancer early is the surest way to control costs and prolong life. 

Second, in addition to hospitals like UAMS who will work with patients to negotiate bills and payments, there are some very good and charitable organization in the US that can help with the costs associated with diagnosis and treatment. 
·      At the American Cancer Society Web site, you can enter your zip code or call 1-800-ACS-2345 to find out where to get a free mammogram.
·      The National Cancer Institute can be reached at 1-800-4-CANCER, and the representatives can tell you where to find a center for a free mammogram.
·      The National Breast and Cervical Cancer Early Detection Program is designed to provide access to mammography and related services, including breast biopsy and treatment, through local providers. The program works differently in each state, so check the specifics for your area.
·      Breastcancer.org has advice on how to pay medical bills.
·      The Susan G. Komen Foundation provides a listing of organizations to which they have granted funding, so call to see what services might be available in your area.
·      YWCA Encore Plus Programs provide services on a sliding scale. Screening mammography is available to women 35 years and older who are medically underserved. Call 1-800-95-EPLUS (1-800-953-7587).
·      At the American Breast Cancer Foundation you can apply for mammogram assistance.

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Today has been a good day for me.  I spent some time working on insurance paperwork and did some research and writing for a new client project.  Tonight a few of my CJRW colleagues, led by the legendary Buckband, came by after work and really lifted my spirits high.  It was much fun.  Tomorrow I will have lunch with my longtime partner in crime Jim, and this weekend I look forward to spending time with some of my best friends in life during Hendrix Alumni Weekend.  Jim is already here from DC, Dennie is making the trip from Florida, and Jay flies in Saturday from Dallas – and there will be more.  It is my many dear friends who keep me going each and every day.  I feel the love and, in the end, I'm going to win!  

14 April 2010

Another Cancer Escapade: FALL RISK!


When I had my unfortunate three-day hospital stay following my first chemotherapy treatment, an unusual thing occurred, not something I’ve really mentioned until tonight. At the time I was transitioned from an emergency room visitor to a full-fledge hospital patient, the very nice nurse placed on my right arm a bright yellow armband that said FALL RISK - in big, bold, black letters.

Fall risk? Are you kidding me? Isn’t this the bracelet nursing home patients wear? Old people? Wait a minute – I’m still in my 40s, even if just barely. I mentioned to the nurse that maybe she had me confused with another patient nearby. She nicely told me that this was not the case.

The next morning, I commented to my doctor that surely somebody had made a mistake by placing this bright yellow FALL RISK arm band on me?” That’s when he explained to me the Fall Risk Index (FRI).. He went on to explain that people with cancer can have an increased risk of falling due to certain medications, dizziness, low blood counts and/or numbness of the feet from chemotherapy. And then there’s more good news . . . Those who fall are at risk of serious injury due to bone weakness and/or low platelets.

Tim and I laughed, and we’ve been laughing about it every since. Until today . . .

Without going in to all the details, here is what I remember:
  • I am going to lunch with my mother and Aunt Alice. They are in Mom’s SUV, parked on the street. I am leaving my home, walking down my front walk to get into the car. 
  • I am now falling off the curb and into my street. It feels like a slow motion instant replay and I can’t seem to do anything about it. 
  • I stumble. I tumble. BOOM! I hit the street. 
  • My mother screams. She creams again. She then jumps out of her car and is standing over me. I’m still on the ground, on my back. 
  • My Aunt jumps out of the car. I’m not seeing her but she keeps screaming “Call 911.” “Call 911.” I’m not sure WHO she’s directing to call 911, but surely it’s not me. 
  • I’m still on my back, lying on Stonewall. Mother is still screaming. My ankle and right food and knees are hurting. My head hurts too. 
  • I’m wondering what I’ve done to myself. But I’m also curious – is anybody else watching this escapade? Surely we look like Keystone Cops, the Three Stooges, Lucy & Ethel with a third side kick. 
The end result: My ankle is sprained. I’ve pulled some muscles in my foot. Both knees are bunged up. My back is strained. I’m sore, including my head. Unfortunately I hit it too, and without any kind of protective padding, like hair!! But probably more than anything – I have a new thing to fear. Will this happen again? When? Where? Who will be there to watch this? My ego is a bit bruised.

At the end of the afternoon, I received a package by mail from the Birdman of Little Rock (i.e. Dean Rutherford). Inside was a personally signed note from the Dean directing me to a personally signed note from the U.S. Surgeon General, Dr. Regina Benjamin, M.D. It’s a lovely note wishing me good luck in my fight. WOW! Dean Rutherford says in his own note: “I figure if America’s Doctor is on your side, this is a good thing.”

Surely he’s right about that. This can’t be anything but a good omen. Never mind that I’m now “upright challenged.” I’ve got Dr. Regina Benjamin on my team! Maybe tomorrow I’ll give her a phone call – ask her if I should be carrying around a cane or a walker, or sporting my body in a wheel chair. Or maybe I should move to a very flat one-level residence with no stairs coming in our out. Maybe she can explain just how it is that a normally healthy woman in her late 40s can now become a true live FALL RISK. Maybe she can give me advice on how to prevent these kinds of embarrassing falls in the future.

Along with getting kicked out of the wig store, this will go down as another cancer escapade, for sure.

Lesson learned: There are definitely fewer side effects if you can manage to walk down the street in an upright position. But even if somebody was watching from their window, even if a neighbor’s surveillance camera captured the entire incident on video, I know one thing for sure: Although the big fall was a bit painful, I l definitely looked very pretty sprawled out on my street because I was wearing one of my magic hats.

As Tim keeps reminding me, "you have to deal with whatever the day dishes out." All in all, it was another good day, other than the fall.

12 April 2010

A New Strategy for the Fight-Complementary Therapy


Dr. Bernie Siegel, a cancer surgeon wrote, "Show me a patient who is able to laugh and play, who enjoys living and I'll show you someone who is going to live longer.

In my initial meeting with my oncologist Dr. Makhoul, he clearly laid out each of our areas of responsibility.  He explained that it was his job to know everything about my cancer and provide me with the most aggressive and best researched conventional medical treatment, to ultimately shrink my Stage III cancer to a size that will allow for successful surgery, hopefully in July.  It would be my responsibility to take charge of my mind and attitude and emotions, to create and maintain my own world of support that will help me deal with the emotional and psychological stresses that result from cancer treatment.  This is often referred to as “complementary therapy.” 

There are several methods of complementary therapy:  acupuncture, aromatherapy, art and music therapy, biofeedback, hypnosis, imagery and visualization, massage, prayer and spiritual practices, relaxation and yoga. 

None of these therapies have been proven to shrink cancer.  However, it has been proven that the recurrence-free cancer survival rate at five and ten-year follow-ups is much higher for patients who respond with a fighting spirit attitude.  Because the five-year survival rate for Inflammatory Breast Cancer is between 25 and 50 percent with a higher likeliness of recurrence, I think I’m headed down the right path. 

The world is not a peaceful place and within each of us there is some form of tension and stress. Life situations can bring disappointments, sadness, anger, frustrations, and other negative emotions, which not only can adversely affect our minds but our bodies, as well. 

In 2004, after surviving three contentious and time-consuming years of education reform in Arkansas, I made two major life-style changes.  First, I learned to eliminate alcohol as stress reliever.  Second, I took a Mindfulness Meditation class at UAMS.

In general, meditation is an effective way to help the mind create positive and peaceful thoughts, to change thoughts from negative to positive.  Mindfulness Meditation is a specific technique that combats life’s problems and situations.  It allows one to be aware of their surroundings, to develop a high sensitivity in perceiving every moment, and enabling them to accept stressful situations, instead of avoiding them.

Mindfulness Meditation can train our minds to achieve a state of tranquility, without being disturbed by outside forces. Not only is it an emotional and spiritual experience, it is also a peaceful lesson in self-discipline and strength of mind.  The practice of Mindfulness Meditation focuses our attention on our thoughts, actions, and present moments non-judgmentally. It does not encourage evaluating or thinking on our past actions and neither does it take our thoughts to the uncertain future. Mindfulness Meditation helps and trains our mind from getting distracted by outside disturbances and enables us to focus our thoughts and relax the mind.

To fight some of these cumulative chemo effects, I’ve made a decision to move myself into some additional complementary treatments.  Maybe acupuncture is not on my list, but I feel fortunate to have been trained in Mindfulness Meditation, to already have been given the tools of discipline that have made this an easy therapy to get back into.  Maybe even a little music therapy will be good for my soul.  I love music, all kinds except raw country.  And my dear friend Ruth gave me a very cool green iPod, so maybe some jazz or classical or even light opera would do my soul good. 

This weekend Tim said something that is so very true – I’m going to have to deal with whatever the day dishes out.  And he’s correct.  Some days it’s been a little nausea, most days it has been extreme fatigue, a few days it has been a strong sense of loss.  I think I’m entering a new phase in this cancer fight that will require more from me, a more proactive plan of self-support, and I’m ready. 


 
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