Friday, December 20, 2013

How to Report Drug Side Effects to the FDA

My post from 2010 on Arimidex side effects continues to receive comments, and I encourage you to keep your doctor and the FDA updated if you have serious side effects with this or any other medication you take.

To report online:

Blogs and support groups are important for learning you are not alone, but if the FDA does not receive reports, there will be no changes to information about the drug.  I'm not trying to get anything taken off the market per se, but if we need specific treatment after cancer, we need a drug that we can live with.

I stopped Arimidex, but only after discussing the risks and alternatives with my oncologist. 

Always contact your doctor immediately if you are having side effects or new symptoms.  You don't have to wait until your next scheduled visit.  Follow up visits are scheduled with the assumption that everything is going smoothly.  If it's not, your doctor needs to know so you can get the appropriate care.

Trust your gut - a second or third opinion can change - and/or save - your life.  I spoke to a lady who was told her pancreatic tumor was inoperable because it was too close to an artery.  She went for a second and third opinion, and found a surgeon that said he does that surgery several times a week.

As health care is changing, it is more important than ever to be informed and proactive in your treatment choices.

I wish you a happy, healthy and abundant year ahead!

Thursday, September 5, 2013

TurbanDiva Special Announcement & Request!

PLEASE VOTE for Titillating Turbans!

Intuit is putting on a Small Business Big Game contest to recognize small business owners. "Small businesses deserve all the admiration we can give them. That’s why we’re putting one lucky business on the Big Game, where everyone can celebrate their passion as much as we do." their website states.

My small business, Titillating Turbans (i.e.; could win a TV commercial on the Big Game (the Superbowl!!) on February 2, 2014!!

Can you help me by voting for my company and telling your friends, sharing this with your social media followers pretty please??

The Cinderella story at this year's Big Game will take place during a commercial break. It's the world's biggest stage, and a lucky small business could be on it right beside some of the biggest brands.

I just entered - PLEASE VOTE for Titillating Turbans as your favorite business – you can vote every day!!

Click here to vote:

Wednesday, July 10, 2013


July 11, 2011, 3 a.m.  I wake with severe abdominal pain, in a half-dream of Mom, snickering with her usual sarcastic wit, “This is how I brought you in, so it’s how you can see me out.”  At 7 a.m. my brother called to say she had passed away in her sleep.

June 29, 2013, 3 a.m.   I wake with my abdomen in knots, in a half-dream of Kathryn, in a sweet breeze around me, smiling and telling me how happy she was about the gathering we had had for her the week before.   Later that afternoon, I take a deep breath when I get her answering service, and leave a message to let her know I’m thinking of her and I love her. 

I feel simultaneous joy and relief when she returns my call a few minutes later.  Her voice is breathless and raspy but laughing, telling me the party went on for hours after most of the crowd left.

At the end of the day, with just a few of us remaining to tidy up, she had said she was really in the mood for shots, and sent her daughter out for tequila. “What the heck,” she said, contrasted with her years of dietary perfection, “at this point it can only help.”  As I drove away, I passed Jen returning with the goods.

During our call, talking is difficult for her, so we keep it brief.  She’s had a recent scare when not being able to catch her breath.  We say what we know, but always needs to be said again and again… I love you, see you in a couple of days.

The next morning I’m delighted to receive an email with her name in the subject line, initially thinking it’s from Kathryn.  My breath catches in my throat when I read that it’s written by our friend…  Kathryn died early this morning with her daughters by her side.  

We met a few years ago when a friend referred her regarding professional services.  Within a few minutes of our phone conversation, we were chatting like old friends.  Kathryn had a way of connecting to your heart gently, instantly, as soothing as a breeze on a sweltering day.  No wonder she came to me that way in my dream. 

Whenever I was with Kathryn I met remarkable, unforgettable people. She was brilliant and brave and relentless in her efforts to find answers about cancer causes and effects and treatments.  Her breast cancer had started long before I met her, and there was a period of time when we first met, after the chemo and radiation and mastectomy and reconstruction, that we thought it was all behind her.

When she later learned about the metastasis, she attacked it head on.  She had successes and failures, tumors that came and went. She researched and shared medical and complementary ways she was fighting and often overcoming yet another challenge.  She survived and thrived much longer than I thought possible, and I believed she would win. 

We had spoken a few months earlier; she had just sold her house, and was excited about a beautiful place she had found to share with a remarkable roommate.  I later found out that they had connected within 11 minutes of this woman listing the opening on Craig’s list, of all places.

She loved her new home, was feeling great and we were trying to set a date to get together.  The good & bad news is that the house was in a spectacular rural setting – and the cell reception was awful.  Through a static connection, she said she’d call when she was closer to civilization.

Time sneaks by all too swiftly as we tend to our to-do lists.  After our last conversation, I thought Kathryn was on the road to recovery and would be here forever.  While talking to a mutual friend a few weeks ago I asked if she had seen Kathryn lately, and she told me she had gone into hospice the day before. The next day her daughter Jen called to invite me to a “Gathering” that Kathryn’s roommate was hosting that weekend. 

Kathryn is an artist and loves beauty and color and nature; I wanted her gift to delight her senses.  I made her something beautiful to wear and shopped for the perfect box.

 I arrived early to help where I could and have a little quiet time to visit before there were too many distractions for her. 

Her daughter & granddaughter had gone makeup shopping, and Kathryn was a willing victim as we fussed over her and primped and decorated. 

She laughed about her “muskrat hair” and delighted in all the loving attention.  Although some gently argued with any self-disparaging hair comments, we smiled at each other with the shared secret that comes only from having been there. 

At some point, all you can do is laugh at the thick regrowth that looks as if it slept on an eggbeater.

As we set up the outdoor celebration, the clouds drizzled gentle tears of resignation.

Within a few minutes everything was refreshed and sunshine welcomed the dozens of friends who arrived with food and spontaneous live music and laughter.

Kathryn greeted everyone blanketed in a pastel pink cloud, surrounded with love.

We all gathered around, her family embracing her, to toast her with love and gratitude for the blessing her friendship has been in our lives. 

The more eloquent among us poured forth what we were able only to feel, and the rest of us toasted our “ditto!!”

In responding to our good wishes, she looked deeply into my eyes, saying thank you, and how much our friendship meant.  Although she made me feel like I was the only one, I know she somehow did this for of every one of us in the group.

That’s how Kathryn is. When you are with her, you feel deeply that you are important and loved.  

I was one of the last to leave.  After hugging me with extraordinary strength, our eyes locked as she said, “Everyone has been amazing. This day has been so wonderful. I’ve never experienced anything like this. Ever.”

Thank you for being in my life, Kathryn.

Thank you for the unconditional love and wisdom you shared that will ever expand to touch people you have never met.

I’ve never experienced anyone like you. Ever.

Saturday, January 26, 2013

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, 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.