Five Steps Forward & One Step Back

Never, not one day in my life, did I want to be a doctor or a nurse.  The thought of dealing with bodily things doesn’t set well with me – never has.  So, when my surgeon gave me instructions two weeks ago about how to dress and redress my surgery wound, I should have known better than to trust myself. 

Yesterday I returned to UAMS and the news is this:  I have officially flunked nursing. 

There will be no surgery this week, and probably not next week either.  My failed nursing skills have resulted in an infection in my surgical wound that will prevent it.  Instead, yesterday I had to have a “procedure” at UAMS to remove infected skin, and resuture my incision.  It wasn’t a terrible day, but it wasn’t my best day either.  Yes, I’m a bit sore and have gone back to pain pills too. 

After the procedure was complete and the surgeon explained what I would need to do to clean, treat and redress the wound each day, I came clean.  I admitted my squeamish nature about these things.  I’m just a PR chick with little ability and no desire to play doctor. 

So, today will be my first daily visit by the Visiting Nurse Association.  Thank goodness for home healthcare and for insurance plans that cover this service.  This is a good thing for medically timid folks like me. 

I’m going to be okay, but just need time to get rid of this infection.  There is a window of time to have my reconstructive surgery before I begin radiation treatment.  In other words, I cannot postpone the radiation treatment for too long, so it’s important to get this infection taken care of quickly.  But I’m optimistic that we’ll make it happen and all will be fine.  

In the meantime, Anna-Lee is finally home from her week in Eleuthera, another very successful and gratifying mission trip working with low-income youth.  It’s good to have her back home.  For the next two weeks, we’ll spend our time getting her ready for the big college departure and getting me back on the road to my recovery plan.  It’s all going to be good. 

If you’ve been following this blog for a while, you will remember my two college girlfriends, Sue and Dian, who sent me pink boxing gloves for my breast cancer fight.  A few weeks ago, Dian was diagnosed with breast cancer and yesterday she began her own chemotherapy treatment.  Would you please say a prayer for Dian, and the thousands of other women who are beginning their own breast cancer journey at this time? 

I love you Dian!  

Battling Honest & Complex Thoughts about Cancer Survivorship

In her book, There’s No Place Like Hope, the late Vicki Gerard states that illness can bring back the small child within us. 

On Friday night, it was hot, I was tired, but I also was trying to finish up some of Anna-Lee’s college shopping.  After we left Bed Bath & Beyond, we had dinner at my favorite Mexican restaurant; after that, a quick trip to Barnes & Noble.  I was doing my best to enjoy a normal evening.  But it just wasn’t working.  My body simply felt very battled. 

I can hear my friends now – “She should be resting.”  “She tries to do too much.” But the truth is, most days it makes me feel good to enjoy something beautiful in the world, experience life as it is, do something normal, to stay on course as a mother of two daughters.  So making this trip to shop for Anna-Lee’s upcoming departure was very important to me. 

As we drove back home, I felt terrible exhaustion, my chest and under my right arm hurt immensely.  One breast cancer sister described the feeling under your arm after lymph nodes have been removed: “It’s like having your underarm dragged across a hot asphalt parking lot.”  She was right. 

Before February, I’ve always had the energy of a squirrel, the nocturnal habits of a vampire.  When will this come back?  Will it ever?   

Lance Armstrong talks about the forever fear that stays with you after diagnosis and successful treatment – the anxiety of the dreaded recurrence.  He talks about how a pain in his toe can send him reeling into a mind-swirl of doubt.  “Has cancer returned?” 

As many survivors share, life is never the same after a cancer diagnosis.  Yes, I understand that now. 

Even with all my good news this week, I felt battled and bruised.  I remembered the many stories of courage that were told on Friday that involved a battle of many years.  My longtime friend Carla’s mom was one of the 40 survivors participating in Friday's Cancer Institute grand opening, a beautiful and brave woman who has been battling cancer for thirteen years.  There was the recognition of a very young man who has battled testicular cancer for seven years.  Each of these people could tell us their own stories about when they thought they had reached the finish line too, only to be told that cancer had snuck back into their bodies. 

Thirteen years?  Seven years?  Could it be possible that my story might end at only six or seven months?   Might I be so fortunate?  Or will this continue, and for how long?  Is it possible to celebrate still feel afraid at the same time?  

Quite honestly, the dream of going to bed and never waking up again sounded like an option.  I remember this same feeling after my husband passed away.  The feeling was an intense déjà vu.  Forever sleep or continue to face more surgery, pain and recuperation, radiation treatments, oral chemotherapies for five more years along with additional side effects, more tired days and the forever fear of recurrence. 

I felt like a child, just wanting to go to bed and have a big cry.  It was my full-blown pity party, without the friends, cake and party hats.  How selfish of me!  Wake up, Stacy!  Enjoy your big-sized bite of great news this week!  

So on Friday night as I went to sleep, I gave thanks for a wonderful week with positive news.  I couldn’t help but ask, “Why me," when there were many others who did not receive good news about their own cancer this week?

This weekend I’ve been getting my big girl panties back on, doing my best to grow up and face the week ahead, even though it means more surgery, another hospital stay, more pain pills and additional discomfort on top of the current discomfort. 

I can do it!  And I will do it!  Maybe I just needed to be a child again, have my pity party and dream about the days when there is no more discomfort and a semblance of normal again. 

I’ve often said that life would be much easier had I been born a moron – just come home at night, get into my easy chair, eat a can of Beanie Weenies, watch mindless television and believe that all in the world is fine – never worrying about the hungry, the homeless, the disadvantaged, education, climate change, abandoned animals, oil spills, economic security and the like. 

But most of us are not morons.  And for the cancer survivor, life just becomes a bit more complex.  I’m adjusting to all of these  thoughts, some of them contradictory; my mind is racing, and I’m hoping to I figure it all out very soon.  I am thankful to all the many cancer survivors who understand and help me move forward, who wrap their arms around me as I seek answers, or at least become more settled with this challenging life experience.  

A Day of Hope

Friday I had my first outing since surgery, to spend the morning at the grand opening of the new Winthrop P. Rockefeller Cancer Institute.  It is UAMS’ $130 million, 12-floor expansion doubling the institute’s clinical and laboratory space.  It’s difficult to describe the building.  However, it was evident that the plan was to create a clinic of serenity.  As Dr. Peter Emanuel, Cancer Institute Director said, “A cancer diagnosis is one of the most difficult and challenging things a person can experience. We want this building to provide as much comfort and convenience as possible while also helping to ease our patients’ burden, lift their spirits and promote their healing process.”  UAMS hit a homerun.  It’s all of those things, and more. 

Several hundred people attended including Liseanne Rockefeller, the widow of the late Lt. Governor Winthrop Rockefeller who fought the tough fight but lost his own battle from myeloproliferative disease in 2006.  I’m certain he is very proud to have his name on such a highly regarded cancer-fighting institution. 

There were many touching moments in yesterday’s opening celebration. 

First, the backdrop for the event platform was the face of cancer, more than forty Cancer Institute survivors, all of them with their own battle scars and stories.  Naturally they received a standing ovation from the crowd as they ably represented the 120,000 patients treated there each year. 

Dr. Emanuel accurately described two of the most significant moments in the cancer journey – the day you are diagnosed and the day you complete your treatment.  To honor this right of passage in the journey, in the facility’s atrium is a sculpture entitled “The Seed of Hope.” As patients complete their cancer treatments they will be given two tokens, one to keep and one to toss into an opening in the sculpture.  While I have not yet arrived to this place yet and won’t until I complete my radiation treatments, all who were present yesterday were given tokens to toss into the sculpture.  I couldn’t help but think about the thousands of people who will toss their coins each year feeling a great sense of hope and triumph. 

There are many definitions and synonyms for the word “hope” – a wish, an expectation, faith, trust and more.  But for the cancer patient, our HOPE is quite simple.  It’s a wish in our heart that life in the future will be better, that we will someday arrive to a cancer-free life without dependency on harsh treatments.

Yesterday a longtime friend said to me, “You really like this place, don’t you?”  My reply:  “How can you not feel an incredible bond to an institution that is doing a stupendous job of curing your cancer, saving your life?” 

The hope I have and the trust I feel for the Winthrop Rockefeller Cancer Institute was confirmed for me yesterday with a story shared by Dr. Emanuel.  He reflected on the 2008 topping out ceremony when a white steel beam signed by UAMS employees, volunteers and supporters was raised into place to mark the highest point of construction on the building.  Among the many signatures and messages was this one, probably signed by a UAMS cancer researcher:

Fight it with all the genius we have for as long as it takes. 

Here’s to you UAMS and your fighting spirit to find new ways to prevent and treat this horrible disease called cancer.  My hope is with you! 

Here's a photo of me and two of my dear friends who work at UAMS, Jo Smith and Pat Torvestad.  They have been two of my great soul sisters, for sure.  

Definition of UAMS Medical Care - and more good news!

Today was originally the day I was scheduled to receive my pathology report.  But when my outstanding report was given to me Monday night, the game plan for today changed.  Here is what I now know. 

First, the most impressive news – yesterday a team of 8 (yes, I said EIGHT!) UAMS physicians met to review my file.  The group included Dr. Klimberg (my surgeon), Dr. Makhoul (my oncologist), Dr. Kent Westbrook, and others like pathologists, radiologists, and plastic surgeons.  WOW!  How impressive is the UAMS approach to medical care, the gathering of many brilliant minds to review your file and determine the very best “next steps.”  This is care at its finest and I feel very secure in all the decisions that we are quickly making.  

The updated news about my medical status is this – originally I had been told that reconstructive surgery was likely not an option for at least a year, maybe two.  However, with my positive pathology report (i.e. no cancer cells present), that has all changed.  I will meet next Tuesday with the plastic surgery team and could have surgery scheduled as early as next week.  My medical team of eight agrees that with my pathology report as it stands, there will be no oncological risks associated with this decision.  

A few weeks following reconstructive surgery, I will then begin radiation treatment for six weeks, as they said, “every school day” – thirty total treatments. 

What does this mean?  For me, the ultimate goal is to be pretty much finished with cancer by the end of 2010, other than the oral chemotherapy required for the next five years and regular monitoring for possible recurrence.  How great that would be!  I could record 2010 as one of the worst and best years of my life, and possibly put this cancer behind me. 

While reconstructive surgery is certainly not a requirement, some women make this choice for various reasons: to return their body to its original shape, for body image and self-esteem, to regain a sense of balance and eliminate the need for external prosthesis.  Whatever the reason, today I learned that the sooner reconstructive surgery happens, the easier the recovery.  So, I’m going to take the plunge and get it over with.  While it might have felt more comfortable to have had more time to consider, the truth of the matter is this – time is not always on our side.  

As is usually the case, I don’t know everything right now, but will know more next Tuesday.  As I told my boss earlier today, my thinking is this – why not have everything done now and recuperate from two surgeries at the same time.  Yes, there is more pain and discomfort associated with this decision.  But better to get it all over with now.  

Again, my medical team is brilliant.  And while they give me lots of hugs and pats on the back for the awesome progress, it is my UAMS team that has created this miraculous recovery.  I will be forever grateful to them. 

Since February I’ve said that I am hopeful to be here when great minds find a cure for cancer.  The truth is – they have already found a cure as they have cured me and thousands and thousands of others just like me. 

So today I change my wish.  I am hopeful to witness the day when NOBODY must experience cancer, that we find a way to prevent its very presence.  Cancer is a dreadful disease that no one should have to endure.  

I am Rockamundo

I’m still hung-over from yesterday’s good news. To join the ranks of those who have also achieved "complete response" to the chemotherapy is the highest privilege of my life, no better achievement to be had.  I'm still rejoicing even though a celebration must be postponed due to the recovery process. 

Last night and today have been memorable days filled with many good wishes from family, friends and colleagues.  To know that others are celebrating with me is very heartwarming and meaningful.  Thank you to all of my dear friends. 

I have not felt well since Saturday morning - lots of pain that I'm not accustomed to.  This is a very tough surgery; don't let anyone tell you otherwise.  It’s painful in the chest area and under the arms where the lymph nodes have been removed.  And for ten days you are confined to home due to two drainage tubes with about four feet of tubing that attach to two jugs they call a “closed wound suction” device.  It’s terribly awkward and certainly not anything that you want to be seen sporting about town.  I'm counting down to Thursday when they are finally removed!  

The surgery is emotionally tough too. I wonder if others who have had this same surgery would agree with me – it’s like any kind of body amputation, whether it’s your breasts, legs, arms, ears or whatever.  Mentally you tell yourself that you can do without this part of your body, especially in exchange for a hopeful cancer-free life.  But it’s still physically and emotionally a tough procedure. 

But there is an old Latin Proverb that says, “Pain of mind is worse than pain of body.”  So amazingly true!  Yesterday I was again not feeling well, experiencing some rather tough pain.  But since Dr. Klimberg called yesterday with the pathology report, it seems that my pain threshold has greatly increased.  I am still having some pain but who cares??  I HAVE NO CANCER IN MY BODY!  I feel fabulous!! 

I must share with you all one of the greatest notes received from a longtime friend.  He always hits the nail on the head, with this time being no exception.  Here is the message he sent:

I remember a horse who won the Arkansas Derby a number of years back.  My memory is he was the longest shot in the field, maybe 100-1 or something like that.  On paper there wasn't any way he could win that race.  Probably shouldn't even have been in it.  Nobody in the grandstand gave him much of shot at all.  But he crossed the finish line first, went to the winner's circle and got his trophy.

You're new nickname is Rockamundo.

So from now on, when we cross paths here in town, just call me Rockamundo.  I like it!  

FOR IMMEDIATE RELEASE

FOR IMMEDIATE RELEASE

For More Information contact:

Dr. Suzanne Klimberg, M.D., UAMS Cancer Institute

Dr. Issam Makhoul, M.D., UAMS Cancer Institute

PATHOLOGY REPORT A TRUE HOME RUN, A MIRACLE

Cancer Lady Dancing In The Streets

(Little Rock, AR – 26 July 2010)  - Pathology reports released late today by the UAMS Cancer Institute have revealed that Little Rock native Stacy Sells, and her whippersnapper medical team, have officially kicked cancer’s butt. 

The team was prepared to release the report to Sells on Thursday at her regularly scheduled appointment.  However, according to Dr. Suzanne Klimberg, Director of the Winthrop P. Rockefeller Cancer Institute Breast Cancer Program, “this news was just too good to sit on for the next three days.  Stacy needed to have this news immediately.” 

“While the initial diagnosis of Inflammatory Breast Cancer was less than positive, we have taken an aggressive treatment journey that has resulted in eradication of the beast,” said Klimberg. 

Proud of her team of UAMS cancer warriors, Sells stood by with a big grin across her face.  “What little hair I have is standing on its end,” she said.  “These people are smarter than a barrel of monkeys, for sure.” 

Sells admitted that only two weeks ago physicians told her that the chances of not having any cancer cells were only 20 to 25%. 

Dr. Issam Makhoul, Sells’ oncologist and a native of Syria said, “Like they say here in my adopted home here in the south, ‘Bless her heart.’”

Further details will be made available on Thursday following the pathology consultation.  The physician team has indicated that radiation therapy will still be a necessary measure to reduce the chances of recurrence.  

"Who cares!  Bring on the radiation," said Sells.  "The only real thing that matters today is the beast is dead."  

Ding Dong! The Witch is dead. Which old Witch? The Wicked Witch!

Ding Dong! The Wicked Witch is dead.

Wake up - sleepy head, rub your eyes, get out of bed.

Wake up, the Wicked Witch is dead. She's gone where the goblins go,

Below - below - below. Yo-ho, let's open up and sing and ring the bells out.

Ding Dong' the merry-oh, sing it high, sing it low.

Let them know

The Wicked Witch is dead!

Children & Cancer, with many thanks to my Council of Moms

Today Allyson will come home for the weekend, and it will be GIRL WEEKEND here at my house.  The last time all three of us were together was the Komen Race for the Cure weekend in St. Louis in June.  What a wonderful two-days we enjoyed together, also formally recognizing the tough battle of breast cancer by participating in the Komen race, along with Jeff, his family and many of Allyson’s sorority sisters from Mizzou.  Although my legs were probably at their worst in terms of pain and lack of strength, it was the perfect weekend for a Mom with cancer and her two daughters. 

One of the things I’ve learned about cancer is this – a cancer diagnosis for Mom is as frightening for her children as it is for her.  Together we are scared to death about death, but all of us are trying to stay strong for one another.  Isn’t that what loving family members do for one another? 

Staying strong and putting up an emotional front is one thing.  But it’s critical that families who face cancer face it together.  With love and hugs and age-appropriate communications, children will adapt if their fundamental and emotional needs are met, if they understand what cancer is all about, and have some warning about the treatment process that lies ahead.  It serves nobody in the family well to talk in hushed tones or to ignore the inevitable.  Instead, parents should empower their children to face the significant new illness demands of the family.  Looking back, my advice would be: 

• Communicate with your children that most families experience changing times and tough times too, whether it’s a family illness, divorce or a financial crisis. 
• Explore their feelings and talk with them about it. 
• Make sure they have others to share their feelings with, whether it’s a counselor, an understanding schoolmate, a youth minister or family friend. 
• Understand that Mom now requires special medical care on her path towards the ultimate goal – regaining health. 
• Recognize what will change, while also recognizing what will stay the same.  This is very important, as children must know that some things will remain constant. 

 But unlike other families in crisis due to job loss or relocation or behavioral troubles, children of a parent with cancer or other potentially fatal disease face the overriding fear of uncertainty, loss and possible death.  With lifestyle changes happening almost immediately, anxiety about the future can be at the highest level for a child.  In the past, it’s been Mom who took care of life’s TO-DO list and problems.  However, during this time, children can find themselves often caring for Mom, and also feeling as though they are facing their own problems alone.

When it comes to cancer, some things will not, cannot and should not change.  All children, including teenagers and young adults, still need their mothers.  As they say, “A mother’s work is never done” – even when we are sick.  Children should know that love is forever and that somebody will be there to pick up the pieces, if needed. 

I am thankful for my Council of Moms who have helped me out during this time – my own mother (and Dad and Mike too), dear friends, mother’s of schoolmates, work colleagues, church members, neighbors and schoolteachers.  And how many times has Tim stayed at my house while I remained in a chemo-sleep to make sure Anna-Lee returned home safely and on time.  So many great people have substituted for me from time to time, have remained in close contact with my girls, have made sure they had good meals, and have been a loving friend and advisor to them both.  Their love for Allyson and Anna-Lee has meant more than I can ever articulate. 

For a Mom with cancer, there is no better gift than the comforting words and hugs from your children who understand and who also have high hopes for a brighter day.  I’m looking forward to a weekend of love and comfort and hugs with my two girls.  And all three of us remain hopeful for a brighter day, filled with good health. 

With much love to Allyson and Anna-Lee . . . you are soulful and heartfelt and I’m proud of you both! 

And with much appreciation to my Council of Moms - you know who you are.   Thank you for all that you’ve done to help me care for my girls.  I will never forget.  

*********************

I experienced a post-surgery upset yesterday when I began vomiting and became covered in a terrible itching rash.  As luck would have it, I was allergic to the pain medication prescribed.  After a quick visit to UAMS, I'm now on new meds and feeling much better, and sleeping well too.  

A Loss

On Monday I lost both of my breasts.  They’re gone, along with a few lymph nodes too.  In addition to losing my breasts, I’ve also lost the ability to wear several types of clothing items that used to fill my wardrobe.  I’ve also lost the freedom to move my arms, especially my right arm.  And some who have experienced this same disease and surgery talk freely about losing their sense of sexuality, restful sleep, and physical comfort.

I came home today from the hospital, around 10:30 this morning.  Later this afternoon was the first time I took a look at the procedure.  I’ve been afraid, somewhat tentative about seeing the final outcome.  But when I did, I smiled.  Why?  Because on Monday I also lost some very bad breast tissue that cancer had invaded, a cancer that was wreaking havoc on my body.  This cancer forced me to succumb to four months of chemotherapy – the elixir for a cure but that feels akin to a napalm bomb exploding inside. 

On Monday I lost a part of my body, but I also lost some of my fear of recurrence.  This loss has been more than worth it, and tonight I am content and feeling hopeful for a longer life.  

Post Surgery - Day #2

There is little to report.  Today has been primarily about pain management and sleep – and lots of both.  Hopefully tomorrow I will go home.  We’ll see, and I’ll keep you posted.  Drugs like these are not conducive for doing much writing.  

This will go down in my personal history as the day I don’t remember much. 

I’ve been told that it’s been a good day. 

Stacy

**************

Hi, this is Georgia, Stacy’s mom.  She cannot stay awake long enough to finish this post.  She has been “in and out” all day, mostly “out.”

Here is what I know:

     She lost very little blood.

     Her vital signs remained good throughout.

     The pathology test will not be back for a week.

     She will have radiation once she heals.

  .  She has a morphine pump, which someone called “delicious.”

     She is very comfortable.

She is on her way to healing.  It is not an easy road, but it is one she has been down before.

We all appreciate so very much your calls of concern, love, your many acts of kindness, food and more food, and the unbelievable faithfulness during these many months.  I am amazed at the outpouring of love and prayers that

have come our way.

You have blessed us forever.