The Cap

By Lorri  Steer

blogger at Terrible and Beautiful (currently private)

I never liked hats before cancer. Somehow like Elaine on Seinfeld, I thought I had an unusually large head and hats wouldn’t fit me so I never fancied the thought of wearing one. Cancer changed that of course. Hats became the banal bread and butter of my existence for a while anyway. I had sun hats and hand knit hats and scarves of course. But there was one type of cap that had the potential to make me look like a really cool Soccer Mom – the feminine baseball cap.

You know what I’m talking about – not one of those authentic, synthetic baseball hats with a logo on the front and a plastic mesh back that you’d see on an old retired trucker. Not those. The hat I coveted was more of a cap – a softer canvas crown with the front bill curved just so to cast a flattering shadow on one’s un-makeup-ed face. The caps that make the women in line at King Sooper look like as soon as they drop off those orange slices for the team they will run their training route for the next local marathon. Those caps looked divine to me but it wasn’t the cap so much as the thick, lustrous ponytail pulled through the back opening. Those bouncy tails looked so sassy and fresh. Perhaps it was the air of youth or femininity but without its addition, the cap was more of hat than a crown.

I wore the caps after treatment even without the pony. It was a necessary transition as my hair came back. A bejeweled pink cap covered my ultra-short hair like a billboard advertising, “Just breast cancer folks. Nothing to fear.” It kept me from a sunburn that first summer and made me look healthier than a cancer turban or telltale ACS hat. But it still lacked the bouncy hair bound tightly with elastic. After a while, I gave most all my head coverings away except several favorites tucked high on my closet shelf. Time passed.

Months turned to years and hair came back. Ponytails – albeit more like pig tails really – returned. I forgot about the baseball cap and went about my life until this morning when unruly locks needed confinement. With negative 3 minutes left on the get the girls to school clock the mess of hair was combed up and secured. I raced into the closet to grab some shoes. A hurried glance in the mirror told me that I’d done better hairstyles in my life but time trumped vanity and I inwardly sighed, “Oh well.”

I spied it on my way out – the beige cotton cap from Disney World. Vintage Mickey seems to say in his squeaky Mickey voice, “Try me!” Tentatively I reached for the cap wondering if it might work – would the ponytail be long enough to pull through? Could I look more like a cool Soccer Mom than a Post Cancer Mom? Would the cap cause nauseous flashbacks like the theme song to “Let Us Sleep On It” on HGTV,the thought of the Spicy Pickle restaurant, or the smell of watermelon Soft Soap at the cancer center? Truthfully, there was no time to wonder – something had to be done and had to be done 3 minutes ago.

One hand grabbed the ponytail and one hand lifted the cap by the bill. With the quick flick of my wrist, the ponytail went through the back opening and the cap came down over my forehead. It worked. I ran down the stairs – late but smiling – with my ponytail prancing behind me. I think this either means it’s time to start training for a marathon or time to get a haircut.

The Fear of What Might Be

(By :Kicked by an Angel)

Last week, during our first day of  lounging on the warm sands of Myrtle Beach, my oldest son asked me why I hadn’t been in the ocean yet, knowing that usually I am the first one in. Even the coldest North Shore waters of Gloucester in June are not enough to stop me. I generally feel that if you are going to take the trouble to travel to the beach you HAVE to go in the water.  Otherwise you might as well stay in your backyard on a lounge chair.

“I’m not hot enough yet,” I said.

On the second day, he asked me again.

“What’s wrong with you?  Why aren’t you going into the water?” he said, shaking his wet head at me like a dog.

“Knock it off,” I said fending off his watery attack with my raised hand, “I just don’t feel like it.”

“Why?”

“Jelly Fish.” I said,thinking about how every other year when I took my morning run along the beach I would see their gelatinous bodies washed up on the shore every few feet knowing how much pain these beautiful creatures could inflict, their long sinewy tentacles poised for attack.

“Mom, I haven’t seen any Jelly Fish on the beach this year.”

“I know, neither have I,” I said, “But that doesn’t mean they aren’t IN the water.”

“So you mean to tell me,” he said, with all his 16-year-old wisdom, “That you are going to base your decision on  fear of what may be in the water?  Of what might be?”

“I guess so,” I said, and went back to reading my book.

I did eventually go in the water a few times over the week, but I didn’t linger–in and out– but I went in.  But Calvin’s words stuck with me, because isn’t  that what I have been doing over the past few years? Living my life in fear of what might happen?  My cancer is like those jelly fish.  A few years ago we saw it all with our eyes, the tumors ,the tests the results, as clear as those masses washed up on the sand. But now those masses are gone, there is no physical evidence anymore.  The cancer is gone.  But is it really?  It could easily be swimming in the currents of my blood stream, waiting to sting me again, translucent and beautiful, its tentacles trying desperately to spread out. Because of this possibility, of what might be,  I take a drug everyday, Tamoxifen, that I hate, that makes me fat and puts me into menopause and causes joint pain and can lead to uterine cancer– but I take it, just in case.

But these decisions on what medicine to take and how long to take them are also based on scientific tests, so they must be right. Right?  The decision to take medicine is not only based on what might be it is backed up by numbers and percentages and facts.  So I know that if I don’t take the Tamoxifen then there is a 40% increase in the likelihood of my cancer returning, and  I base my decision on that.  It’s  also the reason I agreed to taking Herceptin, the drug that messed up my heart, since my Her2/neu positive cancer needed that drug to remain at bay.  Unfortunately though, the doctors and the scientists just can’t seem to get this stuff right.

According to a study out last week in the New York Times, scientists are now discovering what all along I feared; the tests they do on tumors to see what their markers are (mine was Her2/neu positive and ER/positive) are now being considered untrustworthy.  This means that the drugs used to treat these particular types of cancers, which have many side effects, may be unnecessary.

HER2 tests, for instance, can give false-positives up to 20 percent of the time, wrongly telling women they need the drug when they do not. Five percent to 10 percent of the time the tests can falsely tell a woman that she should not take the drug, when she should.

“The science is still evolving,” Dr. Bloss said. “What was true last year may not be true this year.”

My original tests were done at a local hospital in Winchester.  When I decided to continue my treatment at Dana -Farber Cancer Institute in Boston, I asked on numerous occasions if they had re-tested my tumors to make sure they were Her2/Neu positive.  My oncologist and my breast surgeon said they had but I never felt like they actually did a re-test.  Answers were quick and vague and from their answers it seemed to me that they just looked over the results from Winchester Hospital.  This study shows that different hospitals test differently.  There is no standardized tests available.

The two large national studies of Herceptin for women with HER2 positive early-stage breast cancer were just starting in 2001 when Dr. Perez, of the Mayo Clinic, a principal investigator, had a moment of truth. Women were having HER2 tests at a variety of places — community hospitals, major medical centers, national labs. Dr. Perez decided to retest tumors in a central lab to confirm the results.

The outcome stunned her and her colleagues. Twenty percent of the first 119 women whose initial tests indicated their tumors had excess HER2 turned out not to have it on retesting.

“We all felt, ‘Oh boy, we have a problem,’ ” said Dr. Wolff, a study investigator. “This was huge.”

So the studies were modified to require central labs to retest all the tumors.

Yet the discordance remained — one-sixth of women told by local labs that they were HER2 positive were not on retesting.

I was also found to be ER positive. Which means my tumor was fed by estrogen.  For this reason, I take Tamoxifen for 5 years.  Again, this is based on what I assume is the initial testing done at Winchester Hospital.  The article states that there are discrepancies with those tests as well.

Like the HER2 tests, other molecular tests for breast cancer also have problems. Those tests, for estrogenreceptors on breast cancer cells, determine whether cancer will be thwarted by drugs that deprive tumorsof estrogen. They can be wrong at least 10 percent of the time. Some estrogen-depleting drugs, while generally safe, increase the risk ofosteoporosis and, depending on the drug, can also cause joint pain and increase risks of stroke and cancer of the uterine lining.

Estrogen receptor tests are a muddle, noted Dr. Edith Perez, a breast cancer specialist at the Mayo Clinic in Jacksonville, Fla. Quite a few tests are being used, but Dr. Perez could not ascertain exactly how many or how good they were in predicting whether a tumor would respond to estrogen-depleting drugs.

So guidelines were set up, but still they found discrepancies.

There are all sorts of reasons why different labs can get different results, said Dr. Mitch Dowsett of the Royal Marsden Hospital in London and a member of the United States committee that formulated HER2 testing guidelines.

In borderline cases, pathologists can disagree. Or stain can pool in areas where a tumor was crushed or damaged, making it look, to inexperienced eyes, like a positive stain.

Twelve years after Herceptin was approved for women with advanced breast cancer, “we’re still trying to refine the testing,” said Ms. Pellegrino of Genentech.

It is too late for me to do anything about the Herceptin.  If my testing was wrong and I took the Herceptin unnecessarily that I can not change that now.  I will caution any one reading this who is in the beginning stages of their cancer, though, to make sure you demand to be tested 3 or 4 times until they get it right.

As far as the Tamoxifen goes, I haven’t decided yet.  I could stop taking it now, I could dive into that water of faith and hope to swim for years without the recurring sting of cancer.  I will probably ask to be re-tested at some point but then it is up to me.  Do I base my decisions on fear of what might happen or do I trust in science and doctors who are now seeming to me to be quite baffled about how to handle cancer in all it’s forms? Or do I say the “hell with it”, throw off my towel and run head long into the waves, taking my fate into my own hands?  I would  very much like to stop living in fear of what might be, I believe there is a true freedom in that way of living and the only real way to find peace.

Click to read Full Article

Cancer Today by Stella

I’m starting a new topic:  Cancer Today.  Often there is cancer news that I think is important to pass on but a short sentence or two would cover it.  Sometime a “WTF?” or a milder snark is more appropriate.  Hardly worthy of a whole blog post, so this is my solution.

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Health Day reports on yet another breast cancer risk:  dense breasts.  Ironically, the tech at my very first mammogram over ten years ago told me that my dense breast tissue would make it hard to find cancer one day.  Silly me.  I thought he was speaking hypothetically.  I didn’t realize he had a crystal ball.

Actually, the real news is that as breast density decreases, so does cancer risk.  Also, Hormone Replacement Therapy (HRT) actually increases breast density.

It is so encouraging to hear new risk factors.  I remember when I thought I was safe from breast cancer because I didn’t have a family history.  Actually, a family history only increases a woman’s risk by 5-10%.  Check out Up To Date for Patients for a complete list of risk factors for breast cancer.

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Did you see this article on the insurance company WellPoint?  The one that says that WellPoint routinely uses an algorithm to automatically target policyholders recently diagnosed with breast cancer for immediate fraud investigations?  Investigations who’s sole purpose is to find something amiss in order to cancel the policy in question?

Real fraud didn’t even have to exist.  Flimsy evidence or suspicion results in canceled policies.  Canceled in the middle of an extended medical crisis.  Canceled when a woman and her family are under more stress than they can already bear.  An insurance policy canceled when the patient is likely to be off work for treatment and/or unable to manage her normal responsibilities and requiring extra help.

Yes, WellPoint!  Let’s elevate profits above a woman’s life.  Let’s add to the unbearable  stress and terror a family experiences during a life and death battle.  Worst of all, let’s add insult to injury by accusing the victim of fraud to divert attention from your greed.

I am horrified and sickened.  Who runs these companies?

Cross-posted to I Can’t Complain Any More Than Usual

Bucket’s of Saturated Fat for the Cure

(By Clergygirl) A few days ago I noticed a tweet that gave me a reason to pause and think.  It bothered me to say the least.  It reminded me of a game you play with your kids….what two things don’t go together.

See for yourself.  Can you pick out TWO things that should not go together?

If you said a breast cancer research foundation and fried chicken, you were right!  Here’s why…

Current research says that obesity is linked to cancer.   As much as I don’t like it, it just is.  We know estrogen is stored in fat and cancer grows on estrogen.  I’ve known plenty of thin people with cancer so this isn’t saying this is the ONLY way to get breast cancer, but it’s a sure link.  The more estrogen you have in your body in your life span, the higher your risk. 

Then there’s that recurrence risk.  Obesity is a clear risk for recurrence of many kinds of cancer, not just breast cancer.

So here I am, two years out from breast cancer, running 4-5 miles 4 times a week and trying to do yoga and weight lifting 1-2 times a week.  I eat as healthy as I possibly can.  I’ve never been super thin, in fact, I regret the weight gain that I allowed to sneak up on me during my pregnancy years.  I’ve got three kids under 9 and a life I want to live fully, so I watch the research and I try to do what I can to keep from recurrence.  It is very clear that a healthy diet and exercise are key. 

So I have to say as a breast cancer survivor, it was like a slap in the face, it was a blow to everything we work for as a breast cancer warriors to see the premiere breast cancer research foundation teaming up with the premiere fat-laden fast food restaurant (see announcement for double-down sandwich).   It just seems to me if I work hard to do the best I can do, Komen would consider the current research as well.  Ummm…..they are a “research foundation” now aren’t they?  Hmmmm.

This was a sell-out Komen.  Did you ask anyone with breast cancer how they would feel seeing that big pink greasy bucket of chicken?  Was someone going to lose their job if you didn’t raise cash quick?  I really don’t get it?  Research also shows smoking and alcohol consumption are clear links to cancer, so why not team up with Marlboro or Bud Beer?  It’s not just about money, and quite frankly, don’t raise money on the backs of research that is clearly linking to cancer promotion.  Please!

So I was excited to run in my local Race for the Cure coming up in April.  This is the first year I’ve been healthy enough to do it since my diagnosis in 2008.  But now I question my support of Komen. 

Now you know how I feel, how do YOU feel about it?

Meet Ned

(By Clergygirl) I need to admit something.  There’s someone else in my life besides Jeremy.  His name is NED.  I met NED right around the time they removed my breasts.  In fact, it was my surgeon who introduced me to NED.  She was ecstatic, she thought we’d be a hit from the very start.  And she was right, I liked him.  He was handsome and clean.  I like clean.  At first I felt really relieved to meet NED.  I had this image in my mind of what NED would be like, perfect actually…. absolutely perfect.  I figured NED and I could go on living together and we’d be one big happy family.  I figured Jeremy would get used to this other person in my life.  I like NED and I figured he would too.

 But after a while I realized that just like Jeremy, NED comes with his own issues.  I mean….you know, he looks clean, he wasn’t fat or anything like that, he fit “within the margins” of what a good-looking person should look like, but then he got kind of high maintenance on us.  For example, we’d just be going along alright, everyone getting along and he’d make a really big issue out of nothing.  He’d insist it was a problem and we’d have to stop everything and focus on NED.  Like he was the only one in our family.  Jeremy would take it in stride, but I’d get worked up.  Sure, I’d try to look cool and collected, but NED really was making me mad and sad all at the same time.  He can be very selfish sometimes.

Then sometimes NED would be so great we’d just forget about him.  We’d forget even that he was a part of the family.  We’d get going in the busyness of life and forget how great NED actually was and how much we liked having him around.  Sometimes we would get irritated with each other or we’d just plain ignore NED and yell at each other.  We really wanted NED to be a reminder of how much people matter, family matters, but sometimes he’d be so quiet we’d just plain forget.

NED was always great about accompanying me to all my doctor appointments.  Even after my plastic surgery and my little nip/tucks, he would remind me he was still here.  The doctor would come out of surgery and say something nice about NED like “so glad to see NED in surgery.”  This always made me happy.  

Sometimes I would get scared I lost NED, if he left for a little while I got nervous, but he never really actually left me.  After my scans or procedures, or little cancer scares, handsome NED would pop his head up over the scan machine and say “boo! you thought I was gone, didn’t you!”  And I’d laugh and give NED a hug.  Sometimes I’d even cry when I’d see NED.  It would make me so scared when I thought he was gone.

The kids are a little confused by NED, but they really don’t fully understand why he needs to be here.  Cancer was confusing to them too.  It’s better this way I think.  I don’t really want them to fully understand just yet.  Sometimes they ask me questions like “Why do you have to have cancer mommy?”  I remind them I don’t have cancer because NED came to live with us instead.  It usually resolves their curiosity until the next time they see me getting in the shower or changing my clothes and I have to remind them again why NED is here.

 The truth is, Jeremy and I are best friends.  We’re inseparable.  When I want to share something cool that happened to me during the day, I think of Jeremy.  When I want someone to comfort me when I’m sad, I want Jeremy.  But I’m quite fond of NED.  I think NED is an important part of my life.  He’s not always easy to live with, but I’d prefer his moody nature, than to live without him.

 So after two years with NED, we’ve decided he can stay, and we really hope and pray he decides to stick around too.

Here I am before we ever imagined NED coming in to our lives. I think if you would have told me about NED then I would have laughed at you! 

 

Here I am right before NED moved in. If you really want to know how I know this….a. the saggy normal breasts. b. I would not be wearing this shirt post-mastectomy and c. the bald head stuble. 

 

Here I am cuddling with Elijah. You can tell I enjoy having NED around. I think my face looks happier and healthier. 

 

Here I am celebrating my new breasts with Jeremy and NED. Do I look happy or what? This is 5 days post-DIEP and yes, you do see a bit of cleavage! 

Here I am leaning on NED. It’s nice to feel somewhat normal again. 

 

(NED is an abbreviation for No Evidence of Disease.  This is the term they give my cancer status.  I hope NED sticks around, how about you?)