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. 

Head Wraps and Turbans to Flatter Your Face Shape

A fashion solution for a bad hair day or hair loss are colorful head wraps, turbans and layered scarves, which can be worn indoors or out, from casual to formal looks.

If you think you don’t look good in the latest head wraps or turbans, maybe you haven’t found the right style for your face shape. Just like choosing a hairstyle, your goal is to accentuate the positive and balance the shape of your face.

Remember this is an accessory - part of an outfit. A little planning can turn a plain outfit into a fashion statement!

What is Your Face Shape?

A quick trick is to stand in front of a mirror, smooth your hair away from your face and draw an outline of your reflection on the mirror with a soft eyeliner pencil or old lipstick.

1. Notice the overall length and width of your face.
2. Compare the width of your face in three places:

• Across your forehead just above your eyebrows
• Across the top of your cheekbones
• Across your jaw line and chin

An oval face is about 1-1/2 times longer than it is wide and the most balanced shape. Whether or not you have hair loss, you can wear just about any style of head covering.

If the length and width of your face are fairly equal, you have a round face and will want to embellish the flat outline of the basic turban or head wrap. Add height by layering with a twisted band or scarf. You can further soften lines with a bow, half bow or silk flower on one side just above your ear.

A square face is about the same width across the forehead and the jaw line. Add height with a twisted band as described above. To soften your jaw line, tie the band just behind your ear, with full ends flowing in front of your collarbone. Or tie a large bow above or behind your ear.

A heart-shaped  face is widest across the forehead and/or cheekbones, with a small, narrow jaw line or chin. The edge of the wrap can be a little lower on your forehead, with the knot behind your ear and the tie ends hanging long in front or back.

For you, scarf ends that are square or rounded will look better than pointed ones, which can exaggerate a pronounced chin. A full bow towards the top of your head will accentuate your eyes.



For all face shapes, first bring the edges of the piece around your natural hair line to cover the tops of your ears, and play with twisting, wrapping and tying the end in knots, bows or half bows (only one loop).

If the turban completely covers or replaces your hair, you can balance the look even more with earrings that are larger than you may normally wear.

With the increasing number of women every year that undergo chemotherapy, almost everyone has someone close that has to deal with the side effect of complete hair loss, known as alopecia. As our population ages, many women experience thinning hair from thyroid problems and other medical conditions. In normal circumstances, simply having a bad hair day is aggravating, but hair loss compounds the devastating effects of greater health challenges.

It is not shallow vanity to want to improve our appearance. As visual creatures, we instinctively want to decorate ourselves to relate to others and display our need for connection. Even through illness, you will be more encouraged be around people if you know your unique beauty still reflects from the inside out. Being around those who love and support you is one of the best natural medicines you can find.

Experiment with tying the knot on one side and then the other, with tail ends hanging down. Spread the fabric of the bow for maximum fullness, and position it in different areas around your head. What is your best look?

Graduation Day & Flash-Free Nights

Yesterday was my 2nd 3-month follow up with the oncologist since I completed the herceptin in September. We were holding our breath on this one, since the cancer markers had risen as of my last visit. Good oncology news with the lab tests: all the blood tests are great, the numbers for the cancer markers dropped back to normal levels, and despite the chemo, radiation and bout with Arimidex, the dexascan shows my bone density has decreased only slightly from pre-treatment levels. I’m nowhere near osteoporosis. If I can get up off my Twitter-butt long enough to exercise on a regular basis, these old bones will be fine. I’ve graduated to the six-month follow up plan!

The best news is that she agreed the Arimidex was not for me, and maybe none of those meds will be. I’ve been off it a month, and although several symptoms are gone, and the joint pain is significantly reduced, it is still there. Now I have this weird stabbing pain in my left hand that only happens after 9 p.m. and lingers until morning.

I had been trying to get through a 15 minute routine on the rebounder, and halfway through it was all I could do to follow with small movements. The pain in my right hand and elbow was severe enough to preclude my lifting a 5 pound weight. By the second week off that wretched drug, I not only got through the full routine without even getting winded, but I did it in conjunction with arm exercises using both weights. I’ve directed my excitement about the increase in my energy and stamina to override how pissed off I am about the insidious side effects. I was down so long with that stuff that I didn’t know what “normal” was supposed to be.

Monday I’ll see the radiologist for that 6-month follow up, a week before my 1 year rad-iversary on St. Patty’s Day. Even though the process was much easier on me than it has been on so many women, cancer treatment is a brutal insult that is imbedded in the memory of my body and soul. Time seems to have passed so quickly, but it feels like I’m still climbing out of an altered state, surprised every time I reach another step towards health that I didn’t anticipate.

There are yet more special events left in the wake of Arimidex: hot flashes and the dreaded night sweats, which had been long gone and didn’t even arise during chemo. During a relentless attack the other night, I remembered someone telling me of a remedy of apple cider vinegar and honey (or maple syrup). I thought the recipe was for 2 tablespoons of each in water, so that’s what I did. Not only did the hot flashes stop within moments, but I conked out for the rest of the night.

I looked up the recipe the next day in a little booklet my mom had sent me about 20 years ago (and I filed away thinking it was crazy). It actually suggested 2 TEASPOONS of vinegar. No wonder I felt slightly queasy. But it worked – really, really fast.

Usually I have several flashes throughout the day, so I dress in layers, starting with sleeveless. By 3 pm the following day I realized I had been working all day in a sweater AND jacket, and had never felt uncomfortable. I’ve continued the remedy several times a day for the past 3 days; I still have them, but they are significantly less frequent and less intense. I passed the info to a friend who is in a constant state of spontaneous combustion, and it’s working for her, too. Bear in mind that both my friend & I are following a pretty clean diet – little, if any, processed foods, lots of fruit & veggies, etc.

The purist recipe is here: http://bragg.com/healthinfo/acvdaily.html
This is an excerpt:
“When you wake up in the morning just make a delicious cocktail using 2 teaspoons of raw, organic apple cider vinegar, and if you need a sweetener, use organic honey, 100% maple syrup, or molasses to taste. If you are diabetic, use the sweet substitute stevia. I recommend you use only distilled water. This "Bragg Healthy Cocktail" is designed to flush out wastes that are clogging the organs of elimination, the bowels, lungs, skin, and the kidneys. Take it at least twice a day, and you will start to see changes like increased energy, soft skin, and decreased muscle and joint aches from exercise. Make sure you use raw, organic vinegar, never dead, distilled vinegar because the natural enzymes, minerals, and nutrients are destroyed in the distilling process. Any vinegar that is clear and has no "mother" (the strand-like substance in the bottom of the bottle) has no nutritional value. Natural raw vinegar should be pungent, with a rich, brownish color and a visible "mother." Drinking apple cider vinegar daily, and eating a largely fresh, organic, vegetarian diet, along with following a simple fitness program, will change your life so dramatically you will never go back to your old ways!”

Mr. Bragg is a character, and claims it will cure everything, and the book made lots of unsubstantiated claims. It does not mention hot flashes, so I don’t know where I heard that tidbit, but I will say it helped lower the heat!

I do like their products, which you can get at most health food stores. I have been using the Bragg’s Aminos for years and it is delicious; I use it just like any other soy sauce as a seasoning, and always spray it on my salads.

If you have hot flashes and try this remedy, please let me know – did it work for you?
In the meantime: What do YOU do for hot flashes?

What Was I Saying?

I don't know whether to blame menopause, medication or just doing too many things at once, but this is a typical conversation with my husband. He had just finished installing a shelf in the closet when I came in and asked:
Are you hungry?
Dave: Did you see what I did in the closet?
Me: Wow! That looks great!
Dave: Thanks! Are you hungry?
Me: Why, are you?
Dave: You just asked ME!
Me: I did?

On that note, I'm glad we can all laugh, even if some of us don't remember what we are laughing at...(have a nice weekend!)

Adventures with Arimidex

If you are new to this blog, or one of the angels that has been following on the carepages, welcome. Be assured that none of my rantings are complaints; I’m delighted to be alive, regardless of what it took to get me here. Nor is anything here to be construed as medical advice. I am a breast cancer survivor that happens to be a chiropractor and perpetual student, which gives me access to resources that may not be in the forefront of the news. My purpose in documenting this journey is to encourage your own research and remind you that you are not alone when, for example, your fingernails suddenly shred to the quick.

I love my oncologist. She timed each segment of my treatment to allow adequate recovery in between, and always gives me fair warning about the next step. Then she guides me into doing it on schedule while still letting me feel I have some control in the matter. That’s a warm fuzzy for a control freak, even if is an illusion.

My chemo cocktail was Taxotere/Carboplatin/Herceptin. I completed the first two in December ’08, but as a gift that keeps on giving, the after effects of Taxotere still continue to be achy feet and joints, especially first thing in the morning. Those were quickly relieved by just moving around, and the more I exercised, the better I felt. It was just weird to feel like my joints had suddenly aged 30 years.

Months ahead of her writing the prescription for Arimidex, she interjected the topic into each of our conversations, adding a little more detail each visit. Before my BC diagnosis, I rarely took prescription meds, and used over the counter (OTC) stuff so infrequently that it expired between uses. She knows and respects that taking any meds is a big deal for me. When I finished my year of Herceptin in September 2009, it was “time” for Arimidex. She patiently watched me dance around it for weeks with excuses to postpone the start date.

Both Tamoxifen and Arimidex are drugs taken for about 5 years after finishing chemo for breast cancer. They block estrogen receptors, a good thing if the tumor is “ER+” (estrogen receptor positive), which mine was. An oversimplified explanation of the differences between the two is that Arimidex is typically for post-menopausal women with early stage breast cancer, and Tamoxifen is for premenopausal women (thereby inducing premature menopause). For a more detailed explanation, there is a link to an expert at the end of this post.

Back to the matter at hand.

The list of “common” side effects of Armidex (they occur in 10-20% of patients) made chemo look like a picnic. Once I started taking the drug, I found that they can happen quickly. On the upside it significantly decreases the chances of breast cancer. Hopefully, that would not be due to a side effect killing me sooner. After a week of pretending I forgot to take it, by the beginning of October I ran out of excuses.

Because I was concerned about nausea or anything that would prevent me from working, I waited until a Friday night to take the first pill. I collapsed on the couch, waiting for my eyeballs to bleed and my feet explode. Nothing happened.
Within minutes there was an unfamiliar pressure in my head, similar to the onset of a headache, but I was fine by morning. That symptom still occurs frequently, but not enough to concern me.

Much to my surprise, over the next 2 days my skin looked surprisingly clear (the last herceptin infusion resulted in massive outbreaks). Or maybe the Arimidex severely affected my eyesight? My thoughts were more focused, my energy increased, no aches or pains. I even went for a walk/run and actually looked forward to it... for someone who hates to exercise, I felt this was a bonus.

About a week later, my fingernails started shredding like they did during chemo. I woke one morning with the feeling of an ice pick in my low back. I attributed it to maybe sitting too long or wearing the wrong shoes the day before. I did a few stretches, hobbled around and got on with the day. As it became worse over the following week, I made several visits to my chiropractor. I also have a multitude of effective modalities in my own office, and tried them all. I used cold laser treatments, my usual natural remedies, laser acupoint therapy. I finally succumbed to a few doses of Advil. Not only did nothing relieve it, but it continued to get worse and the pain kept me awake every night. By the end of the second week I wondered if the cancer had metastasized to my spine.

I called the oncologist’s office; they assured me that pain was a common side effect. It would diminish over time and if needed, they would prescribe… forget it. Every prescription pain killer gives me hallucinations, and not the fun kind. Even Advil or Aleve leaves me groggy. I stopped taking the Arimidex and within a few days the pain diminished.

Faced with the dilemma of jumping back into hell, I took dosing matters into my own hands and bought a pill-splitter at CVS. It took a couple of weeks and a few more chiropractic adjustments before the pain went away. At that point I went back on Arimidex at ½ dose for the first week, then full dose, and to this date, the pain has not returned.

After about a week, my thoughts became… negative. Not depressed or teary, but almost. Internal chatter about being a loser came out of nowhere and filtered my outlook. I started snapping at Dave, which is WAY out of character. We have such a blissful relationship that it tends to annoy a lot of people. Once I realized this sudden change was just a side effect, I was able to redirect my thoughts and improve my attitude. But its onset was so insidious that I can understand how it could easily lead to depression.

Oh yes, hot flashes. Long gone, they returned with a vengeance. Not the constant drenching kind, but enough to be aggravating during the day and keep me awake at night. Another side effect of Arimidex is insomnia, but the hot flashes are so prominent at night that I can’t distinguish if I would be able to sleep otherwise. I can work around pain, but I can not tolerate sleep deprivation. It leaves me foggy and disoriented, affecting my decision making and communication abilities, and overall unraveling my life.

During chemo, I never used the collection of anti-anxiety meds that were prescribed in anticipation of their need. But I remembered that one med had a dual use of anti-nausea and insomnia relief. Reluctantly, after trying herbal and supplement formulas that work in normal circumstances, I found I need the 1mg of Lorazepam to get a good night’s sleep without the hot flashes waking me. It’s not so bad; if I do have to get up during the night, I easily fall back to sleep, and never feel groggy the next day.

The challenge with natural remedies is that they can face an uphill battle against the unnatural pharmaceuticals, but that is another topic. I still don’t like having to take anything, so acupuncture is on the list as soon as my budget allows. I’ll keep you posted.

Two weeks into the second round of taking the full 1 mg dose of Arimidex, a migraine started mid-afternoon. My only history of migraines is on the rare occasions when I didn’t eat on time. Since I learned to balance my blood sugar, it happens only a few times a year, and goes away with a nap. This migraine was relentless for the next 30 hours. That night I did not take the Arimidex, and it went away within a couple of hours.

A few days later, I noticed a twinge in my right shoulder when I reached back into the console for the garage door opener. It was not relieved by chiropractic or any of the previously mention remedies, modalities, or non-prescription pain relievers. As the pain progressed, simple reaching and lifting became difficult. I stopped taking it about a week ago, and within 24 hours the pain was down nearly 50%. It’s almost gone now; I only noticed it during a yoga stretch yesterday. To get rid of the last bit of inflammation I’ll start with the natural stuff, and if needed, an OTC once or twice. As soon as I can do those movements without pain, I’ll be back on a ½ dose and work up to the full dose again.

I’m learning to pick my battles to manage symptoms. Over the past 18 months, many angels in human and other forms have inspired me to find solutions along the way. Some worked, some did not. I took a MacGyver-like approach to many of the surprises that arose, and came out the other side with a big sigh of relief. As much as I used to avoid exercise, now it is a necessity or my joints will lock up. I take a variety of supplements (including MCHC calcium and high doses of vitamin D) monitor my vitamin D levels with my other quarterly blood tests, and I’m due for another dexa scan to make sure the Arimidex is not disintegrating my bones.

Below is a list of Arimidex side effects. I do not suggest you do what I do. Every cancer is different, every person responds differently to any given treatment or illness. But knowledge is power. Being aware of the possible symptoms can give you more control by knowing what to monitor, what to ask your doctor, what choices to explore. If you do have side effects, please report them to your doctor as well as the FDA at FDA MedWatch.

If we don’t speak up, they don’t know. I am not anti-drug. I am anti-drugs-that-do-more-harm-than-good. A couple of paragraphs of resources follow; please share your story by clicking on “Comments.” Be well.

Common side effects of Arimidex include hot flashes, weakness, joint pain, pharyngitis (sore throat), hypertension, depression, nausea, vomiting, rashes, back pain, insomnia, headaches, coughing, shortness of breath and swelling of the lymph nodes or extremities…. asthenia (lack of energy & strength), arthritis, pain, fractures, back pain, pain, headache, bone pain, increased cough, dyspnea (shortness of breath), and lymphedema… onset of osteoporosis… increased cholesterol levels.
Other risks include severe allergic reactions, heart attack, stroke and liver dysfunction.
Serious adverse reactions with ARIMIDEX occurring in less than 1 in 10,000 patients, are: 1) skin reactions such as lesions, ulcers, or blisters; 2) allergic reactions with swelling of the face, lips, tongue, and/or throat. This may cause difficulty in swallowing and/or breathing; and 3) changes in blood tests of the liver function, including inflammation of the liver with symptoms that may include a general feeling of not being well, with or without jaundice, liver pain or liver swelling.

My favorite site for more-than-you’d-ever-want-to-know-about-your-meds is rxlist.com, where you can find side effects, drug interactions, details of the studies, comparisons with Tamoxifen and post-marketing info – the stuff they find out AFTER the drug is released upon us.

For a simplified explanation, here is a link to an excellent article: Antihormonal Therapy for Breast Cancer

What have been YOUR adventures with Arimidex?

I'm Still Here!

Posted Jun 8, 2009 1:11am

I can't believe it's been almost 3 months since my last update. I'm working on a long one, but until I complete that epic saga, here's the synopsis: good news and more good news!

My six week follow up with the radiation oncologist was awesome - no burning, no discoloration or tissue damage. So to celebrate, last month I went for my first mammogram since all this started, and I'm happy to report it wasn't any more uncomfortable than usual. That means there is no residual inflammation from the radiation. Yipee. Follow up heart scan, MRI and mammo are all clear, blood tests are good... whew. Five more months of herceptin and I'll graduate to an oral drug for a few years.

LONG story short - I did design a user-friendly turban, and the site is up and running starting... NOW!!

You are invited to visit! Click here: Titillating Turbans!



Since I had designed them for women who had hair loss from chemotherapy, I was really surprised when other women also started grabbing them up when I brought them to the office - just because they add so much pizzazz to your look!

Most important, please share this site with anyone you know that has either lost their hair or works in any business related to cancer care. I know there was a reason I was forced to find a way to look stylish no matter how lousy or discouraged I felt. It would brighten my day so much to get a compliment from someone who loved my turban, especially on those days when I wondered if I would ever look normal again!

June 12 is my first "cancerversary;" it has been a year since the initial diagnosis, and I feel so blessed to report all the post-treatment tests are clear. With renewed energy and well on my way to a healthier, cancer-free life, it's time to bring a little color into the lives of those who are still in the toughest process of their healing journey.

Whether it's a no-hair day or a bad-hair day, women feel elegant in these soft, colorful turbans. You can order on line for direct shipment, and if you are local, please come by the office to say hi and try them on.

I'm pooped - it took all day to photograph all that stuff and post it. Truly a labor of love. It's past my bedtime. I love you all, and thank you from the bottom of my heart for your continued love and support.
Nightie-night,
Laurie

Rainy Day Rantings

Posted Jan 24, 2009 2:52pm

It is six weeks post chemo, and three months of turban wrapping has started to lose its fascination. Dave said leave it to me to turn hair loss into a glamorous experience, but now I would like to see a little replacement growth before I start radiation. The latest displacement of my fears of cancer recurrence is to perform a new morning ritual of searching my scalp for signs of peach fuzz. Just prior to my usual primping, I don my “googly-glasses” (3.25 strength usually reserved for close bead work) and devote a few minutes of squinting into the magnifying mirror on my windowsill to closely examine my scant buzz cut under the clear light of day. I was very fortunate to not lose my brows or lashes, although they thinned a little. But you can imagine my renewed hope when I found a freshly sprouted eyebrow hair a few days ago.

Unfortunately, during hibernation the follicles seem to have lost some of their innate intelligence to follow an appropriate growth pattern. This young hair appeared on a random spot in my upper eyelid, like a confused baby animal that wandered away from the safety of the herd, so my lioness instincts attacked it with tweezers and plucked it away. The brows may be thin, but they are neatly aligned. In my world, OCD trumps phalacrophobia (“a persistent, abnormal, and unwarranted fear of becoming bald”).

Those neuroses aside, I am delighted to find my energy and mental acuity are back to their normal hyperexcited levels. Since the last chemo, the post-holiday dietary cleanup and other good stuff mentioned in the last post have helped me to increase my activity, start toning muscle a little, and drop a couple of pounds. I had taken a break from oxygen therapy for a few weeks over the holidays, then started them again last week. Now that all the chemicals are leaching away from my system, the oxygen therapy can take full effect and I feel like my brain is on fire – in a good way!

Like the old saying, I had been down so long, it felt like up… my brain just won’t shut off and the creative juices are flowing. I went on a long overdue frenzy of office cleaning/filing/correspondence catching up this week. This weekend I’m catching up on household and art projects, and last weekend I cooked up enough food for two weeks of lunches and dinners.

All this is just in time for six weeks of daily radiation, which starts next Tuesday. I’ll go the same time every day and be in and out in about 20 minutes, including time for costume changes. The “big chemo” is over, and now I’m doing all the periodic re-tests. In preparation for radiation, last week I had a CT scan and two tiny tattoo dots (painless) to designate where the radiation beams will be aimed. I was positioned on the treatment table with my arm overhead & a mold was shaped around me so I can duplicate the position every time I get zapped.

This past week I had another MRI (inspiring visions, although not as intense as the first one), and in 2 weeks I have the second MUGA scan. This is so weird for me. I went from a lifetime of just going for an annual physical to planning my daily life around my treatment schedules.
So far everyone has said radiation is a cakewalk compared to chemo, and if I’m going into it feeling this good, I may be able to stave off the most common side effect of fatigue. Here’s a little aside on the word origin of “cakewalk.” In the 19th-century, this was a strutting contest held among African Americans in the southern US in which the contestant who walked with the fanciest steps won a cake. It is also the origin of the expression, "Well, if that doesn't take the cake!" Its origins actually go back to traditional dances hundreds of years earlier, and there is a fascinating story at www.jakelegstompers.com/Media/Text/Cakewalk-Chronology.pdf . As usual, I digress.

So what am I going to do with all this energy? I look around to see the magnificent accomplishments of other women that have survived horrific experiences with cancer, and mine seems like a sniffle in comparison. Some started international movements, nonprofit organizations to support education, where do I go with this?

As much as I enjoy being on stage, I know my best work is done when I work one on one. Right now I feel the faster I can get back to school, the more I can learn every day and better help each patient I see. It’s no different than what I’ve been doing for the past 15 years or so, but it’s with a different perspective, a deeper compassion, a broader understanding and empathy. Before this happened, I was never sick, never had to chose among activities based on my energy reserve or physical limitations. So allow me to leap to my soapbox for a paragraph or several…
Let me tell you, feeling lousy sucks – literally. It pulls you away from fully enjoying life and the people around you, so the earlier you can prevent it, the easier it will be to get back on course. A patient described it perfectly the other day. She is in her 20’s, reasonably healthy, but felt she wasn’t participating in her life – it was just “blah.” She was functioning and getting through day to day, but mildly achy and tired, without excitement or interest in much, and no “forward thinking.”

The good news is that she has the foresight to recognize early that something has gone awry & she is popping back very quickly. Had she not, in another 5 or 10 or 20 years she would be like most of the women that come in, overwhelmed and exhausted, frustrated with increasing medications, needing months or even years to unravel the complexity of all the things that are malfunctioning. It’s not hopeless, but the longer we wait, the bigger the mess and the more work it is to clean up. And being so pooped from feeling lousy compounds the effort required to get well.

Just like it’s easier to lose the first 2 pounds than wait till it’s 20, don’t wait to take care of your health, no matter what stage. Our “health” culture trains us to cover symptoms with a quick fix, or “wait and see” but by the time you have a symptom, something has been wearing away for a long time.

Recently an elderly patient was not getting any relief from her back pain after a few weeks of treatment, although she used to respond within that timeframe. Long story short, after a series of deeper questioning, she reluctantly gave me the details of other recent symptoms that were obvious red flags that her low back pain could be due to cancer. I convinced her to immediately call her doctors, which she did, although in the past they had minimized the significance of her symptoms. Because she had been convinced that her symptoms didn’t mean anything, she was embarrassed to “complain” about them to anyone else – including other doctors.

Even with my referral, her GP said her heavy constant rectal bleeding was probably because she took a lot of meds and didn’t eat enough vegetables, and an MRI wasn’t important. The advice was to improve her diet for few weeks, and if she didn’t improve, they would consider a CT scan. Wait and see… Fortunately, with the new information, her previous surgeon was concerned, scheduled her for surgery within a couple of weeks, and what the GP dismissed as a hemorrhoid was actually an early malignancy. Now they are keeping a close watch and following up with the appropriate tests.

This isn’t the first time there has been a case like this, and I’m afraid it won’t be the last. I won’t mention the name of this healthKare enterprise, but this has also happened with many other providers, and as you know, that includes some of my own. I know I keep repeating myself here, but I can’t emphasize enough that when something doesn’t feel right, don’t ignore it or cover it up. Trust your instincts, listen to your body and be proactive – and if no one listens, get a second or third opinion. In the meantime, get your regular checkups – even if you feel good, eat your fruits and veggies, take your vitamins and shake your booty.

Have a fabulous weekend – this rainy weather is great for indoor projects, like cooking up a batch of healthy soup for the week (hint, hint)!
Love, Laurie

The Un-'Do!

Posted Nov 2, 2008 1:23pm

OK, today is the day. As Dave rolled over toward my pillow to kiss me good morning, I tried to warn him, but it was too late – he rolled right into a fluff of hair I had shed through the night when my protective cap slipped off. We both said, “EEEEuuuuuuwwww!!!” and he made a lot of “pffffth…” noises trying to blow the strands off his lips. It was gross. I knew if I didn’t do something about this soon, we’d both be coughing up hairballs. With this nice muddy weather, he was off for a dirtbike ride after breakfast, and I went in for what I thought would be the final cut. After trimming what was left to about 2”, it still kept falling and clinging to everything like spiderwebs. Enough already.

So many women have told me they just reached a point where they wanted to shave it all off, and I wondered what that feeling would be like. Now I know. It’s like a breakup – the fear of the unknown is so strong that you justify staying even though you know it's not right. Then one day you are so done you just want out, even if it means leaving everything behind. Cutting my hair in stages over the past few days has given me a certain sense of control, not over my hair loss, but in my choice in how much I was ready to participate in the process. At this stage, I’m OK with shaving it. I took out my electric shaver and started at the front of my head, but it’s not really designed for this heavy duty task, and it was leaving odd zig-zag trails. Good grief. I look like a gang member. I gave up on that project and left a message for my hairstylist friend that offered to do this a few months ago. I hope this is not the week she is out of town.

In the meantime, I have errands to run, so today is my red scarf day. I had gone grocery shopping yesterday, and while everyone else was dealing with umbrellas and hoods, I had my green scarf to keep me dry. When I was checking out, a woman waved to me from the next register and said, “I love your scarf!” I could be starting a new trend in Folsom! Here’s the up side – I can blow dry my fuzz in 30 seconds instead of 10 minutes. I don’t need color, conditioner, mousse or hairspray, and I save at least another 10 minutes because the hot rollers just won’t fit.



There’s a break in the weather, and while the sun is shining I’m going to hit the road. Enjoy your Sunday!
Love, Laurie

I Am Not My Hair

Posted Nov 1, 2008 6:30pm

A salesman is lost in a rural area and stops at a farm to get directions. As he is talking to the farmer he notices a pig with a wooden leg. "How did the pig get a wooden leg?" he asks the farmer.

"Well", says the farmer, "that is a very special pig. One night not too long ago we had a fire start in the barn. That pig set up a squealing that woke everyone, and by the time we got there he had herded all the other animals out of the barn and saved every one of them."

"And that was when he hurt his leg?" asked the salesman.

"Oh no" says the farmer. "He was fine after that. Though a while later I was in the woods out back and a bear attacked me. Well, sir, that pig was near by and he came running and set on that bear and chased him off. Saved me for sure."

"So the bear injured his leg then," says the salesman.

"Oh no. He came away without a scratch from that. Though a few days later my tractor turned over in a ditch and I was knocked unconscious. Well, that pig dove into the ditch and pulled me out before I drowned."

"So he hurt his leg then?" asks the salesman.

"Oh no," says the farmer.

"So how did he get the wooden leg?" the salesman asks.

"Well", the farmer tells him, "When you have a pig like that, you don't want to eat him all at once."

And when you are as attached to your hair as I am, you don’t want to cut it all at once. Monday morning I was looking out my bathroom window and noticed a few leaves had fallen from my fig tree. Uh oh… I had my normal energy back, so I put in a full day at work, stayed late to finish up the billing, did some grocery shopping, and came home with energy to spare. After dinner, I was lounging on the couch talking to Dave, and ran my fingers through my hair. I felt a little “snap” like when you pull a hair, but there was no physical sensation, except the tickle of a couple of hairs between my fingers. Uh oh…

Tuesday I washed it gently, and noticed there was more hair on the bathroom floor than usual after blowdrying it. That was the last day of my hair as I have known it. I wore it up in a clip for safekeeping, but when I tugged on a few stray hairs that had dangled to the back of my neck from the clip, I was able to discard most of those. There was no doubt that the process had begun. That night I showed Dave my new trick and he felt worse than I did. At that point I became more fascinated by the process than upset. I had been telling him that my roots were showing, and if my hair was going to stay much longer I'd better color it. Guess that problem is solved!!

So I decided I might as well make this fun. I tied back my hair, Dave took a picture, and I sent it to a whole bunch of friends with a request to help me decorate my head! (If you didn’t receive one and would like to play, just email me!)

I don't know if I got all my anxiety out of the way worrying about it earlier, or if it hasn't hit me yet, but right now it doesn't bother me & I'm curious to see what the process is going to be like. If nothing else, it is incredibly messy. I’ve tried wearing those little hair-catching caps to bed, but they pull off as soon as I turn over, and there is hair everywhere. One of my friends described it as “falling like autumn leaves,” and that is certainly an accurate metaphor. I either had to cut it or drag out a blower and a rake.

So Thursday morning I cut off about 6”. I tied the locks with a ribbon and saved them with the first yellow fig leaf to fall from my tree, and a beautiful red and yellow leaf from my maple. I look like the old photo on my website, so it wasn’t much of a shock. From this point on, we’re going for the ‘do of the day! On Friday I took advantage of Halloween & the rain and wrapped my head with my long, fringe-y burnt orange scarf. The explanation I use with the patients that don't know about this situation is that my hair is out of control in damp weather & I would rather wear a scarf, and they just love it :>)

Several times last night I woke with flying hair tickling my face, crawling down my back when I got up to go to the bathroom, leaving a trail on the tile. So this morning I cut it even shorter, and I had to laugh at the lack of control I had over it. Every time I would pull a section to cut, long strands would just loosen & fall, so I was never sure if what I cut was attached or not. Or if it would attached much longer. What a mess! Where’s a Flowbee when you need one? I swept everything into a paper bag, in the spring I’ll scatter it in my garden for the birds to use in their nests. It’s like the opposite of scattering my own ashes, a way to celebrate my life and share it with the other living critters that share the property.

Before taking a shower, I wanted to treat myself to the Miracle Whip facial that Lori-with-the-gorgeous-skin has been telling me about. I am not making this up. Her dermatologist was amazed that her skin has absolutely no sun damage, despite the same ritual of baby oil and iodine sun worship we all succumbed to in the ’60’s. You spread a thin layer of Miracle Whip on clean skin, wait a couple of minutes, and then rub gently. Off comes the old, dead skin! My skin is absolutely glowing. The only drawback is that I smell like a sandwich. But that’s not necessarily a bad thing. I may not repeat the process tomorrow, when my hair is really short. Looking like a glowing Chia pet that smells like a deli delight could just be the thing that sends me over the edge.

Tomorrow (if there’s anything left) we’re going for the spikey ‘do, but who knows? Stay tuned.

Here’s an exerpt from wonderful song by India.arie:

I Am Not My Hair

Little girl with the press and curl
Age eight I got a Jheri curl
Thirteen I got a relaxer
I was a source of so much laughter
At fifteen when it all broke off
Eighteen and went all natural
February two thousand and two
I went and did
What I had to do
Because it was time to change my life
To become the women that I am inside
Ninety-seven dreadlock all gone
I looked in the mirror
For the first time and saw that HEY....

I am not my hair
I am not this skin
I am not your expectations no no
I am not my hair
I am not this skin
I am a soul that lives within

Does the way I wear my hair make me a better person?
Does the way I wear my hair make me a better friend?
Does the way I wear my hair determine my integrity?
I am expressing my creativity..

Breast Cancer and Chemotherapy
Took away her crown and glory
She promised God if she was to survive
She would enjoy everyday of her life ooh
On national television
Her diamond eyes are sparkling
Bald headed like a full moon shining
Singing out to the whole wide world like HEY...
india.arie “I am not my hair:

If I wanna shave it close
Or if I wanna rock locks
That don't take a bit away
From the soul that I got