Carol - Our "TurbanDiva" of the Month

It's been a long time since my last entry. I think the need to write arises in me out of a sense of longing for answers, and when I'm happy I don't feel so much like blogging.  Fortunately, it certainly doesn't stop other means of communication for me.

I've been enjoying the delightful visual orgy that is Pinterest, and thought it would be fun to do a "Pin It to Win It" contest this month. Little did I know how this simple act of kindness would introduce me to so many wonderful women.

Carol is our first weekly winner, and as her story started to unfold, I asked her if she would mind sharing her story as the "Turban Diva of the Month" on my site.  For those that are more likely to visit blogs than shopping sites, it occurred to me to share these stories here. This is Carol's marvelous story:

I’m a single mom of four, and was born and raised in Atlanta, GA.  I was married twice to military men and have lived many places.  My daughter was born in KS, my oldest son in GA and my 2 youngest sons in Germany. Worked at the VAMC for a year and then worked for the University of Missouri for 15 years. First at the School of Nursing. The last 10 years at the School of Law.  I was put out on medical disability/retirement Sept 2012.

I still am not sure that I am in full admission that I have cancer.  I think I have done everything that I have needed to do with this battle with a sense of humor.  People would ask me how I could still laugh.  And my response was always, if you can't laugh, then all you can do is cry and that's not fun. 

I had been sick for a couple of years.  I had been seeing specialist after specialist. I was told I was a menopausal aged woman and that I needed to eat less, exercise more and was even sent to see a dietician to look at my food intake. 

But yet I continued to get bigger; bloating was horrible. By the time they figured out I had cancer, I was a Stage IV multi-site metastasized patient.  It took them several weeks to finally decide it was Ovarian cancer.  Because I also had cancer in my spleen and liver, it was not a "standard" ovarian diagnosis.  But, nonetheless, there it was.  Approx 10 -12 tumors in my abdomen and one mass the size of my fist.  

As women, we know that sometimes doctors treat us as just another complainer.  I let this go on way too long, all the while bloating up and in pain.  Never again.  If you feel that something is wrong and you are not getting listened to, or treated as such GO GET ANOTHER OPINION!  Women are too quick to comply and we don't like to hurt feelings.  "Well, my doctor might find out I saw someone else.  That might upset them."  GOOD!!!    I hesitate to think if I had raised a bigger stink two years ago, would this had been found much earlier and would I have become a Stage IV level or not.  I will never know.

I should take a moment to mention how I found out.  My liver specialist had sent me for an ultrasound on a Thursday. He called me back that afternoon and told me I had an appointment the next morning at the cancer hospital.  They thought they had seen something.  Now at this time, I don't know what my diagnosis is, I don't know what they have seen, I'm completely blank.  But how bad could it be, right?  I mean, I had been seeing these specialists for two years.  I went into the room.  And this resident came in and blurts out that I am Stage IV and I probably have 6 to 18 months to live. 

Do not ask me anything that happened after that.  I was in such a state of shock, I could not hear, I couldn't see, I couldn't think.  To this day I cannot shake those words out of my head.  Once it's in there, it's stuck.  The one smart thing I did, and I recommend to everyone, is have someone go with them to every appointment that you are going to be talking to the doctor.  Thank goodness I did, and my friend wrote down notes for me to read later.  She was both my angel and my rock.

Now, I had to go home and call my kids and tell them.  Words were said, questions were asked.  I am blank to this day. My oldest son said recently that he doesn't remember how he felt when I told them about my cancer diagnosis.  He said all he kept thinking was, “Can this be real? Why? And what was going to happen to get treatment and what if the treatment didn't work?”

But he doesn't remember what I said or how I answered his questions.  And I really don't either.  It was like watching a TV show and it was a surreal experience.  My second youngest son said, "I felt very sad and concerned about your health. And mad that you had been seeing these doctors for so long. How did they let it get to stage IV?"   

Here are the 3 things that completely broke me down: 1.  The idea I was not going to be here to see my two youngest sons graduate from college.  2.  That I would not be in attendance at any of my children’s weddings.  3.  I would never know or see my grandchildren.   I would completely fall apart at these thoughts. 

I initially started my care at a different cancer hospital and a different Oncologist.  But I had been going there for a month and nothing was being done. They kept telling me that treatment would start soon.  When? 

I got angry.  I was going to the doctor’s every week and nothing was being done.   I finally got ticked off enough to decide to look elsewhere for treatment.  I found one of the best oncologists we have in this town and a center who worked to make sure you got all the help you need. 

I started with my new doctor on a Friday; I was in chemo the next week.  He was shocked to learn they let me just sit for a whole month.  He and I have similar personalities, so within 10 minutes of meeting with him, I knew I was making a change.  After only two months of chemo, all my tumors had shown signs of reduction. 

I was put in touch with our local American Cancer Society chapter.  If you have them available, I urge you to contact them.  They can give you info on websites, and support groups. This is where I found out about Turban Diva’s website.  A lot of them offer a class called "Look Good, Feel Better".  It's a group of volunteers who work with women and they do neat make up ideas, and bring in turbans and scarves and show you different ways to use them.

I was able to get one free wig from the ACS. I thought, "I've been a redhead maybe when my hair falls out, I would try being a blonde."  Why not!  Well, I tried on some blonde wigs and realized I was a redhead for a reason! 

One thing I would like to express, even if you don't attend a class or you're not the make up wearer, please start a strict moisturizing program.  It doesn't have to be expensive products just get into the habit.  Chemo is going to be rough on your skin too.

I was doing chemo every week for six months.  But, if you must do it, then why not have some fun with it.  Your hair is going.  There's no way to stop it.  I went down to get my hair cut off before it started to fall out, but the stylist just cut it very short and it took about two months before it fell out.  Once it begins to fall out, it seems to happen rather rapidly.  It is most annoying to have hair falling into your food all the time; taking a shower, and losing large clumps all over the place.

I tried to make light of being bald.  I would post on my FB wall things like, advantages of no hair:  1. You save a lot of money on hair products 2. Getting ready is quick. Grab your turban off of your stand, throw it on and roll.  3. Some people have bad hair days, chemo patients have no hair days.  4. Let the wind blow.  It’s not going to mess up your turban!

But never forget, it's okay to cry.  I would get in the shower and cry. It was something I got used to doing as a single parent.  I’d think I can’t show the kids how scared you are, but if you cry in the shower, no one can hear you and if your eyes are all red, it was the soap. 

I'm sure your doctor or nurse will tell you that you don't just lose the hair on your head.  I enjoyed the side effect of not having to shave my legs for about four months.  That was a positive.  I was, however, not prepared for my reaction when my eyebrows and eyelashes fell out.  It had taken such a long time, I thought I was past the point it would happen.   I was four months into treatment.  That was harder for me to deal with than all of my other hair.  I had gotten an eyebrow pencil and was filling in my eyebrows. After my eyelashes fell out, I started drawing a thicker line of eyeliner.  I could not use false eyelashes while in treatment. 

But, you see, I consider myself a clothes horse.  When it came time to decide to wear the turbans, I looked at it as a way of expanding my looks.  Coordinating your turban or your scarf or hat with your look can become fun.  You want to make sure you have what I call the basic three.  One for when you are very cold, one for when you are sweating the chemo and one just for you for looks.  (Actually, TurbanDiva.com has so many pretty sets that you will want more than one!)

When I started chemo, I began a Cancer Sucks page on my FB.  Some people like to journal, but mine was more a photo view of what cancer, chemo and surgery was doing to me physically. Don't discount your access to social media.   My friends who live so far away have been so supportive.  They felt like they were involved in my travels down this journey.  Their prayers and continuing uplifting support have gotten me through some rough times. 

It has been a year since I was diagnosed.  I have spent many hours in the chemo room.  I have had major surgery that kept me away for a month and completely opened up my abdomen from top to bottom.  And even though there was some hope I may get a break, I had to restart chemo again January 2, 2013.  Can't say it was my best New Year’s event, but I know I am looking at things differently now.  While I am hoping that I might get a break after this round, I am trying to make plans to do some traveling.  

As my new doctor says, only God decides when we are ready to go.  But when you are put in the situation that you know your life has been shortened, you re-prioritize.  Nothing about this experience is fun.  Nothing about what it does to your body is pleasing.  At times, with all it does to you, you can feel less than the woman you were. I would look at my bald head in the mirror and wonder if I was ever going to see the woman I was before my diagnosis. It's very hard sometimes.

But the one thing you can control is your attitude about it.  I used to call my chemo days my favorite day of the week.  I was going to get cool meds that make you either sleepy or goofy.  I felt that the chemo was doing the battle and I was there to fight.  Plus, it was the one day a week that I could eat without getting nauseated.  And the nurses in the chemo room are great.  I laugh and joke around with them all the time.  Sometimes they bring me pastries!

My prayers go with any and everyone who has to deal with this most horrendous ordeal called cancer.  It doesn't see age, race, sex, rich or poor.  But you do your battle.  Fight as long as you can.  There will be some good days in between the bad.  Don't miss those.

My motto:
This is how a Southern girl kicks cancer’s butt:  Get dressed, put on your makeup, throw on that turban, put on your kick butt boots (styling ones, of course) and go and fight the good fight!!  But first, girl, go get that manicure!

My favorite Quote:  Just when the caterpillar thought her life was over, she became a butterfly!
Butterflies and the color purple have become my symbol for strength.  When I was admitted to the hospital in November for my surgery, the first thing I saw was a beautiful photo of a white butterfly sitting on a purple flower.  And I remember, even though very heavily sedated that whole week, it made me smile. 

Cancer Survivor - for Today

As we sweep away the final remnants of pink that have come to symbolize October, I realize that I am 3 years past my chemo treatment that started October 16, 2008. I'm still here - that makes me a "survivor" - but what does that mean?

I don’t know why some of us survive and others do not, no matter how fiercely they may fight. There are those that face devastating battles, which leaves me feeling I am in no position to complain. My case was merely a case of sniffles in comparison.

To be a cancer survivor means I have been blessed with another day. It doesn’t mean I’m safer than anyone else. It doesn’t mean the risk is over. It doesn’t mean another cancer can’t attack at any moment.

I am angry that I “did everything right” and got cancer anyways, but that doesn’t minimize my appreciation of the endless miracles in my life.

Being a survivor does mean I have a greater respect for life. I was given a second chance, and I am grateful for that with every breath. And I educate – even nag – others to trust their body, recognize when something is not quite right, don’t delay testing and get screened regularly because we don’t really know who is at risk or why.

There is a lovely line from a short prayer that asks, “May the stream of my life flow into the river of eternal love.” I don't remember where I first found it, but it touched me so deeply that it forever surpassed the multitude of prayers I was forced to memorize in school.

It reminds me that moments of our life are like the infinite droplets in a stream, mostly unnoticed as they rush toward the river of experience that is our life. But every now and then we are splashed with a moment that becomes an indelible memory, part of the story that ultimately defines us.

When cancer flooded my life, it was not without significant splashing moments.

The moment in 2005 when I found “a lump.” The tiny, hard kind you read about in all the “how to do a breast self exam” flyers.

The kind you hope you’ll never find.

The moment when realized I was not separate from the women around me, uniformed in our blue exam gowns as we sat in the radiology waiting room, trying to pretend it was just a routine office visit. United by the fear that our bodies may have turned against us, we waited.

I wondered which of us would remember that day as “The Day I Found Out…”

The moment when my tests came back clear – when they said it was simply scar tissue.

I felt released, relieved and invincible.

And three years later, after a routine mammogram, when the nurse brought me to a consult room, where I waited in the eerie glow of light boxes and diagnostic equipment.

The doctor entered with a warm smile, sleek black hair, and looked much too young to be giving me advice. He said it still looked like scar tissue, but had changed a little and I might want to consider a biopsy.

I was afraid a needle biopsy would hurt and I wanted to stop worrying about the lump. Put me to sleep, take out the whole damn thing. Let’s be done with it.

I remember a groggy post-op grin to my smiling surgeon who said everything went great, see you in 2 weeks. At the follow up appointment I actually asked him to cut to the chase because I was late for work. Exam, smiles, it was healing beautifully. Yeah, yeah, let me out of here.

No one suspected cancer, none of the tests hinted at malignancy. I had no family history of breast cancer. My family’s life expectancy is 100. I had a healthy lifestyle and a positive attitude.

No cancer for me. Can I go now?

He looked down at my file. “Well, it’s cancer.”

The stream of my life roared over me like a tsunami. He patiently delivered his speech on the early diagnosis, favorable prognosis and treatment options.

All that tumbled around my mind was, “blah blah blah it’s cancer am I going to die? Will I lose my hair? Who will see my patients? How will I pay my overhead?"

I remember the look on my husband’s face that night when I told him, his silence through my chattering about the "early diagnosis and good prognosis."

I had to keep talking to break through that “blah blah blah it’s cancer are you going to die?" I wanted to protect him and everyone I loved from any pain or fear.

To hear the words, “It’s breast cancer” (or any other life-threatening diagnosis) transforms your life. Until that moment, there is no way to even guess how you would respond.

You only know will have no choice but to pack for your journey into the unknown, armed with love and support. And be confident that your guides will appear with the answers whenever you have a need.

Life through breast cancer was surreal. Every day presented a new challenge as my body shed one thing or another or erupted with an unexpected symptom.

Yet I’d look up and appreciate the sky, with gratitude for the day. I’d more deeply love the people around me. It was painfully clear that I darn well better, because none of us know how long we have to enjoy this life.

I discovered solace in my garden, and metaphorical wisdom in killing off the weeds and replanting new life. I found hope in watching the cycle of death and renewal.

The health field is my life work, and I thought my vision was expansive. Breast cancer was a humbling event; I realized how little I knew, even about my own body.

Cancer was a floodlight that illuminated a depth of knowledge, compassion and empathy that would never have been so amplified had I not been faced with this detour in my life.

I've often been told not to get too stuck in my head with all the intellectual stuff – and to deepen the connection between my heart and intuition.

There was probably a simpler way to work that out besides getting cancer, but here I am. I feel blessed that I was guided to remarkable teams of doctors and nurses. And the angels in human and other forms that inspired me to find solutions along the way.

Cancer taught me that I am vulnerable, mortal, and no one is invincible. If I had the choice of never having had cancer or having it, I would accept it, although I truly hope my lesson was learned and I don’t have to repeat it.

The benefit I could never have foreseen is that cancer connected me as lifetime member of what I call the Reluctant Sisterhood. Absorbed into a network of survivors that inspired me to believe this could bring me greater strength, we pool our hard earned wisdom to share with those who will unfortunately but inevitably follow.

We probably would not have chosen this path. Yet we are eagerly drawn into this collective conscious and unconscious network of healing. This is not limited to breast cancer, nor to women; anyone with a need to heal is embraced into the circle of those who have traveled it ahead of you.

This journey has been remarkable, and even the pain and nausea and frustration pulsated with the adventure of life itself that makes me more grateful for every day.

I have an extraordinary husband and family. I learned over and over how incredible my friends are, and every day was like falling in love all over again.

They will be there with unfaltering support through any perilous journey, surrounding me with the love, prayers, sparkly vibes, decorated heads, cards, emails, and most of all the laughter and heartfelt warmth that makes it so easy for me to keep a positive attitude.

I feel gratitude every moment for how they enriched my life beyond my imagination.

I used to believe, "Everything happens for a reason." Then I got cancer, and entered a family of thousands of cancer patients of all ages. And I can find no reason for all this suffering.

Now I believe stuff happens for no reason. But what I do believe is that what we do with that "stuff" defines who we are. I believe we are incredibly loving beings, with instincts not only to preserve our own survival, but to ease the suffering of others.

Whether you knit a cap, send a card, call, tweet or discover a cure, your role in another’s healing is equally important. Our strengths arise from our ability to sense the needs of others and our resiliency in the face of adversity to find solutions that will ease their pain.

I’d like to share the rest of that short prayer, or maybe it’s a poem or a wish.

God made the rivers to flow.

They feel no weariness, they cease not from flowing;
they move as swiftly as the birds in the air.

May the stream of my life flow into the river of eternal love.

Loosen the bonds of sin that bind me.

Let not my work be ended before its fulfillment.

and let not the thread of my song be cut while I sing.

Rig Veda