A Mother and her Two Daughters

28 February 2010

If Love Can Heal . . .

After getting tossed from the wig store yesterday, I stayed kind of low profile today.  But it was a good day with Anna-Lee, Tim and my dear friend Ruth. 

With her playful ways, Anna-Lee continues to make me laugh each day.  She is a delightful daughter and a helpful roommate all the time, especially now.  And on Tuesday Allyson will join us for almost a week!!  Allyson will be great medicine with her gift of silliness and laughter. 

Tim is just my rock with his Midwestern approach to life.  He is always quite logical, never in a panic, and always keeps me focused on the many aspects of life other than this nasty cancer.  This weekend he moved furniture, cooked, ran errands and spent almost two hours putting together a wooden file cabinet purchased from the office supply store – “Assembly Required.”  He transformed my bedroom into a bedroom/home office/den with a TV and DVD player.  I’m not sure how I would be holding up without his constant giving self. 

And then there’s Ruth who skipped church to come over and have coffee this morning.  She’s my pragmatic friend, a manager extraordinaire, which is why Ruth’s become my task master.  She’s the one who helps makes my lists of what needs to get done.  Today, we worked on my friend Patty’s suggestion – to put together a chemo bag, kind of like those car trip bags I used to make for the girls for long road trips.  I had no idea that each time I go for chemotherapy, I’ll spend the entire day at the UAMS Cancer Institute. Patty and Ruth gave me some great ideas for my own bag – from blankets and puzzle books, to music and DVD players/laptop.  Dear friend Ruth then goes on a shopping spree and fills my bag with the very best goodies a girl can imagine!! 

I sit here tonight and feel so very blessed.  Since receiving the verdict last Wednesday, my heart has been filled with so much love from my family and dear friends.  Rebecca and Melanie have been my UAMS carpool buddies, while Sheila took me to run countless errands on Friday.  Leslie & Eric have been my anti-oxidant nutrition and dinner consultants.  And Skip just makes me laugh while also stopping by to fill my birdfeeders.  Beautiful flowers from Eric and Lynda, Hugh and Michelle, Tom and Kristy, Randy, Kay, Marvin & Charisse, Vicki and my colleagues at AAIMS and Lighthouse for the Blind.  Love and health tokens from Marion & Carolyn and Gerry; bath goodies from my fellow Trustees at Philander Smith; a lovely prayer shawl from Erin and the ladies of St. James Methodist Church; healing crosses from friends at Pulaski Heights United Methodist, healing hands from Liz & Mary; a handmade peace sign from Kate; longtime friend Kevin sends me a new friend from Buffalo – also a single mom and breast cancer survivor; heartwarming letters from Jimmy, Martin and Jay; beach clothes, cupcakes and soft nightgowns from Lindsey & Julie; angels from Alice, Jamie & Marylou and a lovely angel pin from Sarah and her mom; inspiration books from Beth & my grandmother; lavender from Ken & Sandy and a lavender neck pillow from Aunt Kay; prayers cards from Uncle Pat and prayer messages from longtime friends at First Methodist Church in Hot Springs; my first knitted hat from Pamela; food from Angela and Eden, the Bishop and Elaine, and Mary York Shermer; food certificates from family friends like the Rutherfords, Faulkners and Speeds, and my friends from the United Methodist Foundation; visits from Colette, Grant, Jim & Sarah, Carl, Melinda, Jane, Angela and Eden, and many more.  Sweet phone calls from Kate, Neal, Charlotte and countless others; fun field trips with Mary Ruth.  Jordan and niece Emily are my prayer warriors, while Ellen keeps me focused on my need to focus on me.  And then there’s the wonderful Brenda, who along with Rebecca and Clay, are making life much easier for me to continue to my work from home.  Then there are hugs in the grocery store from Clarice and Frank and Gary and Jane.  And I can’t even begin to list all the beautiful cards and letters and emails.  I’ve already filled one basket and have moved to a second one.  It’s overwhelming . . . And then of course there is Mom, Dad, Mike, Bari, Alice, and my cool girl cousins in Texas.  Close family means much, to my girls and me.   

God is awesome and so are my family and friends.  With God and my family and so many dear friends in my heart, can cancer break it?  No way!  Thank you to all my dear friends for your love, and helping me keep heart.  If love can heal, I’m almost there.  

27 February 2010

Cancer Patient Kicked out of Wig Store

Three things I was told this week:
  1. You should shop for a wig BEFORE your hair falls out.
  2. Hair loss should happen 14 to 18 days from the start of chemotherapy. 
  3. Central Arkansas has a great wig store, which will go unnamed for purposes of this true story. 

Today my college friend Mary Ruth took me to the wig store.  We were hoping to make this a fun trip, something we would remember with a touch of seriousness but also a little fun.  MR picked me up around 3:00 and we proceeded straight to the wig store that had been recommended by a very credible hairdresser.  When we arrived we were blown away.  There must have been several hundred wigs in the shop – every color, shape, ethnic style, and human or synthetic hair.  Unbelievable.  I’m almost certain that this was my first visit to a wig store. 

Rule #1 – You cannot try on wigs without first purchasing a wig cap.  This is probably a good idea for sanitary reasons, and to guarantee only serious shoppers are tampering with the wigs.

MR and I buy the obligatory wig cap for $5 each plus tax (NOTE:  My dear friend is committed to helping me feel at ease today by participating in this necessary exercise).  Besides, we’re very serious - seriously taking our first look at wigs, with the idea that “the magic wig” should be purchased within the next ten days to two weeks. 

We put on our wig caps and began trying on the various locks of hair.  It was definitely more fun because MR played the game with me, even though I'm certain she's likely not going to buy a wig anytime soon to wear to her office. 

After a few fun wigs for Mary Ruth, it's now my turn.  I have to admit it was rather difficult at first.  Nothing I put on seemed to remind me of myself.  Too long, bad color, not my hair style.  In fact, what I finally realize is that I really don’t have a style.  My real hair kind of just sits on my head unless it’s a special day that requires a real hairdo. 

At this time, the store clerks have been very nice, helping us find what we’re looking for, brushing the wigs to try to suit my style.  After trying on several wigs that almost made me cry, and with MR giving me a few hugs along the way, we finally find one that seems to work rather well.  It’s about my color, about the same cut. 

We take a few photos, but with a price tag of $300, I'm definitely not buying the first wig that I sort of like.  Instead, I want to make sure my girls think it looks like me, that they like the rug I’ll be sporting around for the rest of the year.  So, I’m thinking, instead of coming back to the wig store and trying to find this ONE WIG among the hundreds of wigs in this store, I'll write down the manufacturer’s name, wig model and the color.  This seems like a very logical thing to do, don’t you think?  As I’m writing down the information, the wig store owner comes over to my chair and snatches the wig from my hands.  She proceeds to scold me and tell me about Rule #2.

Rule #2:  You CANNOT write down the details of any wig in this shop.  You can buy a wig but you CANNOT write down the manufacturer's information found on the tag.  HUH?  What’s up with that?

The wig store owner storms off with the wig and places it behind the cash register.  She then realizes that MR has another wig in her hand that was another possibility for us.  She then snatches that wig from MR’s hands.  Again, she marches to the cash register and hides the wig behind the counter. 

We are incredibly perplexed.  MR even asks, “What did we do wrong?”  Again, she repeats rule #2:  “You cannot write anything down about the wigs.”  She takes away my chair, then removes the mirror.  We’re still confused, a little embarrassed.  So we move over to the hat section, still trying to figure out what went wrong.  As we're talking in hushed tones in the hat section, we're then told about rule #3.

Rule #3:  We cannot try on any hats without wearing the mandatory plastic hair net.  Obviously we are no longer welcome in this wig store.  Nobody is trying to assist us anymore.  

I’ve never been kicked out of ANYWHERE that I can recall.  Even when I was young and single and frequently about town, me and my friends were never even kicked out of a popular restaurant or bar.  My parents taught me how to behave when out in public.  And today, I’m basically kicked out of a freaking WIG STORE!!  What happened?  What did I do wrong?? 

As we left the store headed to MR's car, we finally figure it out.  It’s called price comparison shopping.   We access the Internet on my phone, key in the manufacturer's information, and there it is – the very same wig on sale at one web site for $144, less than HALF the price of the wig shop.  

Today was the my first time to basically be kicked out of a retail store.  Should I be embarrassed?  Probably not.  I’ll consider it a lesson learned.  Oh the perils of cancer and the reminder that I’m definitely moving through unfamiliar territory that has many unwritten rules.  Wig Shmig!  I think I’ll spend some time tonight searching online for some very cool turbans. 

26 February 2010

Getting Ready for Cancer

When the girls were small and we would head to the beach every summer, it seemed like it took at least a week to get all the shopping, packing and preparations completed. And I would have never made it without my annual "Beach Trip To Do List."  

This morning, after a very good sleep last night (FINALLY!), I had one important goal today – get myself ready for cancer.  Okay – not as much fun as the beach, but it is still very necessary, and only seven days left to get there. So, here is my list, which resulted in a very productive day.  
  • Made a list of everything I love to eat.  Then went to the market and bought all the ingredients.  I’m only going to eat things I covet between now and next Friday. 
  • Wrote 24 thank you notes.  Then ordered more notes to send to friends who have sent food, flowers, potted lavender, angel pins, meditation books, healing crosses and prayer shawls – and boxing gloves too.   
  • Called the repair man and got my gate fixed so “The Great Canine Escape Artist” (a.k.a. Abbey) can’t roam the neighborhood anymore. 
  • Bought paper goods, toiletries, and dog/cat food to last for a month.
  • Abbey got a bath.  
  • Located a good wig store in North Little Rock.  Did you know you can get almost any color and style you want, and they’ll even cut a wig to match the cut you have right now?? 
  • Found a very cool web site to purchase high-fashion turbans. I even found a very dressy one to wear Easter and to Allyson and Anna-Lee’s graduations. 
  • Cleaned out a few closets. 
  • Ordered a new bumper for my car.  Did I forget to tell you that somebody wrecked my car the morning I found out I had cancer?  It was really a bad day!  
  • Downloaded some relaxing music for daily meditation. 
  • Reviewed the "favorite food list", then made some adjustments.  Went to another market and bought more food.  
  • Found another web site that carries Raquel Welch wigs.  Maybe, much later, when I get new body parts, I can get some other stuff that looks like Raquel Welch.  HA!!! 
  • Bought new sheets for Allyson’s bed – she comes home Tuesday to spend almost a week at home!

Just like preparing for the beach, or a political campaign, or even moving to a new home, I’m making my list and running my errands.  I’m trying to get ready for cancer.  What have I left out?  If you think of anything, let me know.

25 February 2010

Finally, some GOOD NEWS!!

Throughout the last week, so many have talked to me about the importance of liking my medical team.  Today was my first meeting with Dr. Makhoul.  And I’ve already fallen in love with my doctor.  He is the real deal!  He’s brilliant, patient, jovial, personable, and a big hugger too.  He spent over two hours with me explaining everything about cancer, blood cells, chemotherapy, side effects, my diagnosis, and all the rest.  Dr. Makhoul is everything you would want in a physician who is your partner in the biggest fight of your life.  He is a doctor of the body and the soul.  How fortunate we are in Arkansas to have this passionate and talented doctor at the UAMS Cancer Institute. 

Here’s the GOOD NEWS!  My Pet-Scan and breast MRI show that, other than my right breast and the lymph nodes under my right arm, there are no more active cancer cells in my body.  Thank you God, thank you friends for all your love, good prayers and positive juju.  This is just the diagnosis I needed to assure myself that this fight can and will have a happy ending!! 

Before treatment can begin, I will have two more tests.  One is a MUGA scan, which is a nuclear medicine test to evaluate the function of the heart ventricles.  This is important to make sure my heart is in good enough shape to handle the type of chemotherapy that I’m going to be taking.  The other test will be another MRI to check on some baseline markers for future evaluation. 

Following these tests, and about my treatment:
·      Beginning next Friday, I will begin chemotherapy for the next 18 weeks at two-week intervals. 
·      The first four treatments will be a combination of Adriamycin and Cyclophosphamide.
·      The next four chemo treatments will be a drug called Taxol. 
·      Each of these eight treatments will be followed by an injection of Neulasta – a shot to help me fight the white blood cell deficiency and strengthen my bone marrow, to keep it healthy.

Following the 18 weeks of chemotherapy, hopefully I will have surgery, then probably some more chemo combined with radiation treatment.  The truth is, I will be closely monitored and the treatment plan could be adjusted from time to time.  But for right now, Dr. Makhoul has outlined his plans to eradicate this mass and kill off other cancer seeds that have probably found their way in other areas of my body.  If I were to only have surgery without chemo first, the chances of a cancer recurrence would be between 70-80%.  By having chemo BEFORE the surgery, recurrence drops to 30%.

What does all this mean?  It means today we received some good news, even though it’s on top of last week’s bad news.  This is still a very aggressive cancer, but I have a beatable foe before me.  As brother Mike said to me a few minutes ago, “They just told you that the guy you’re going to fight out on the schoolyard is a beatable wimp, and you’re going to win!!”  I like how that sounds. 

Thank you to friends and family for your wonderful prayers!  Tonight is for sure a very good night!  I think I will celebrate with a good night's sleep.  

24 February 2010

Golf Carts, Boxing Gloves & Wishful Thinking

Today was "test day."  I returned home from UAMS around seven o'clock, have been there since two o’clock - but all for a good purpose.  Modern medicine is truly amazing.  To think that it’s possible to drink a cup of juice (okay-radioactive fluids), lay on a table and in thirty minutes they can scan your entire body for cancer cells – well, it’s just something our grandparents and great-grandparents could never even dream about.  I had several scans today, and I'm so wishing for good results tomorrow.

Once again, the folks at UAMS really outdid themselves.  From the lovely Melissa in The Breast Center, to the lovely young radiology tech at the PET-Scan clinic, every contact at UAMS has been over-the-top in terms of the incredible care they give to each patient.  They even take care of patients who get lost and show up at the wrong clinic.  For my ignorance and pitiful sense of direction, I got a shuttle ride in a fancy golf-like cart by a nice young woman who drove me from one building to another.  No news until tomorrow, but I’m sure sending up a big wish that the news is better this week than last week. 

If your heart is in your dream
No request is too extreme.
When you wish upon a star
As dreamers do.

So, with little to report, let me just say this.  THANK YOU to so many friends for your nice cards, letters, emails and FB messages, flowers, food, guardian angels, Holy water, books, bath goodies and more.  I feel your love - really -- and it feels soooo good!!  

I must share with you all a fabulous package that arrived by mail today from two wonderful girlfriends from my Hendrix days.  I’m thinking I’m going to wear them around my neck for each chemo treatment.  What do you think?  Is this the bomb or what?  Real tools for the big fight ahead!!!  Thank you to my longtime friends, Sue & Dian!! 

Love to you all.  I meet with my oncologist tomorrow afternoon and will learn much more.  I’ve heard nothing but terrific reports about Dr. Makhoul.  Keep wishing for me - upon a star, in your prayers, three coins in a fountain, whatever you think might work.  Many thanks and much love!  

P.S.  Did I remember to ask for good wishes?  

23 February 2010

Gifts from God

In the movie Pulp Fiction, two sociopaths named Jules and Vincent have a discussion about miracles following one of the movie’s most brutal scenes.  Jules asks Vincent if he knows the meaning of divine intervention.  Vincent replies,  “Yeah, I think so.  That means God came down from Heaven and stopped the bullets.”  Some might make a case for this definition.  However, more learned theologians have described divine intervention as a moment when someone is placed in the right place at the right time to be a catalyst for someone in need.  Or to put it more simply, something that happens when we pray for help – also known as “gifts from God.”

The past 24 hours have been very good for me, especially in terms of gifts from God.   

Yesterday I went to Sam’s to buy buckets of blueberries. While maneuvering through the store, I had a surprise encounter with former State Rep. Josetta Wilkins of Pine Bluff.  It’s been a long time since we’ve been together, but we began our brief encounter with hugs and kisses. 

Josetta and I became friends in 1995, when she and the Arkansas Hospital Association hired me to help her pass the Arkansas Breast Cancer Act.  While a longtime breast cancer survivor, it was Josetta’s tireless advocacy and passion that led to the passage of this law and ultimately created the BreastCare Program, a comprehensive program that provides free breast and cervical cancer screening, diagnosis and treatment services for Arkansas women who have little or no health insurance.  It was such my pleasure to work for her for two years to pass this historic piece of legislation.  But of all the times to run into her . . . We discussed my diagnosis and she offered me prayers and support and her lovely hugs that she so freely shares with those in her life.  I truly felt blessed. 

Then today I spent the morning with my dear friend Colette and my new friend Ellen.  Ellen and I share four or five mutual friends.  What makes her very, very special is that she is a 9-year Inflammatory Breast Cancer survivor – and she had a very tough IBC diagnosis.  Ellen, Colette and I spent a couple of hours together, along with Anna-Lee and my Mom.  My new friend shared much about the journey before me.  Obviously she was very successful in managing this nasty cancer, so I’m going to make Ellen my guiding light.  Another wonderful blessing.  

Often God’s greatest gifts come to us in disguises.  The past two days I have seen God’s gifts and they have come to me as my fellow sisters, courageous survivors who will lift me up along the way. 

Blessed is he who, in the name of charity and good will, shepherds the weak through the valley of the darkness, for he is truly his brother's keeper and the finder of lost children.

Thank you God.  And thank you to all my lovely friends. 

Tomorrow afternoon I will have a breast MRI and a PET-Scan, two very critical tests.  Cross your fingers, say a prayer, send me good juju.  I’m hopeful that these tests come back with good news.  

22 February 2010

A Cancer Center With Love & Laughter

This morning I received an IV portacath in my chest.  This is a small medical device placed under the skin in your chest vein directly under the collarbone.  I’m serious – you cannot even see it.  The “port” will save my arms and hands from the constant needle sticks associated with chemotherapy and blood tests/monitoring.  It was a rather simple surgical procedure requiring only a few lidocaine injections, ending with a few stitches and some surgical glue. Then a few x-rays to make certain the port was inserted in the right place.  Modern medicine is amazing.   

My friend Melanie took me to UAMS early this morning for this procedure.  Those of you who know Mom, well you know mornings are not her best time.  Besides, she’s got lots of carpooling ahead of her getting me to my chemo treatments.  

Mel and I observed a few significant things about the atmosphere at the UAMS Cancer Institute.  First, the very lovely ladies at the reception desk, who had smiles on their faces, a skip in their voice and a little laughter among the two of them and other patients from time to time.  Then there was Sammie, the Auxiliary volunteer in the waiting room, who embroiders little bags and pillowcases and other trinkets while working the guest services desk.  Patients are invited to put their name in a bucket and at the end of the day, one lucky patient will win whatever Sammie makes that day.   Then there was my young and handsome surgeon, Dr. Moore, and his able nurse Naomi (see photo below).  They began our brief encounter with a clear description about everything that would happen, then some beautiful melodic music to create a relaxing mood.  If I had been wearing a mood ring, it would have been totally blue as they helped get me in a complete state of calm.  Then I moved on for x-rays with Gwen.  Her sweet voice and constant arm pats and shoulder rubs reminded me of my favorite elementary school teacher Mrs. Reed.  All of this is to say – I continue to read that attitude has much to do with fighting cancer.  And I cannot imagine a hospital that understands this any more than everyone I have encountered at UAMS.  They sure know how to create the right hospital attitude with much love and laughter for their patients.  I feel so very fortunate to be under their care. 

Tonight I’m looking forward to some yummy chicken and dumplings from my friend Angela.  Anna-Lee and I will enjoy our dinner while we celebrate Allyson tonight, even though she is working herself silly at Mizzou.  In this very terrible economy, Allyson has received a job offer from HEC-TV in St. Louis.  They are Missouri’s leading producer of education, arts and cultural television programming.  Cheers to Allyson!!  And cheers to our many friends who continue to send prayers and good wishes our way.  We love and appreciate you all!! 

21 February 2010

All Things Since The Verdict

It was Wednesday, February 17, when they gave me the verdict. “You have breast cancer.”
For several months I’ve known something wasn’t right with my body. I’ve had tests, more tests, blood work, scans and more scans. But the damndest thing about Inflammatory Breast Cancer is that it’s called “the silent cancer.” No lump, and very seldom found by the traditional mammogram. Instead, it presents itself in the form of breast inflammation, redness and swelling. Two days after it presented it’s nasty self to me, I went to the doctor and the procedures began. But who knows how long it has been there, invading my breast? It’s a very rare type of breast cancer, with only 1% of breast cancers being IBC. While the average 5-year survival rate for the more common breast cancers is now 87%, the survival rate for IBC is 40%. As one friend said to me yesterday, “You sure know how to pick the difficult battles of life.” But hey - I'm thinking that 40% are outstanding odds for a "tough as gristle" girl like me.
While the diagnosis is not necessarily the best, family and friends continue to remind me that cancer never met a tougher bird than me. I’ve battled the tobacco industry, the powerful health insurance lobby, tough legislators and an army of school superintendents who wanted to keep schools the same. And my track record is this – I beat them all! So, I plan on taking on this war with breast cancer just like all my other battles – with a strong will and determination to win! I WILL NOT LET YOU TAKE ME DOWN!! I’m not giving up and I plan to fight like hell. I saw a bumper sticker several months ago that has stuck in my mind: “Whoever said that winning isn’t everything wasn’t fighting breast cancer.”
I keep telling myself, “Cancer does not have a brain or a heart or a spirit – but I DO!
Since Wednesday, I’ve been fortunate enough to be under the care of Dr. Suzanne Klimberg, Director of Breast Surgical Oncology at the Winthrop P. Rockefeller Cancer Institute – both of them world renowned in breast cancer research and treatment. And since Dr. Klimberg took me under her wing, I have had more digital imaging and lots of lab work. Tomorrow they will insert an intravenous port in my chest where I’ll receive my chemotherapy treatments. On Wednesday I’ll be at UAMS for an MRI and a PET scan procedure. While the cancer has spread to my lymph nodes, this test will determine if it has spread anywhere else inside my body. And finally, on Thursday, I’ll meet with Dr. Issam Makhoul (pronounced “McCool” – how cool is that?) who will be my medical oncologist. He’s the one working with my pathology reports trying to determine my “chemotherapy cocktail.” Those who know him say he is the best. Dr. Klimberg told me that and Mackhoul has developed some new chemotherapy treatments for IBC – and having some positive results. All of this is very good news for me and the other IBC patients at the WPR Cancer Institute. What a cool breast team I have!!
Cancer will not take away my spirit!! As the doctors tend to my body, my spirit is what will keep me alive. And I will continue to remember – I have a fighting spirit, while cancer has no spirit.
When you say a prayer for me, please say one for Allyson and Anna-Lee too. They need God’s love, and your love too. Thank you my dear family and friends. You give me energy, and you keep my spirit alive! I will never lose spirit!
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