This major retailer knows how to use cause marketing to its advantage.  I have watched this display all throughout the month and, as you can tell, taken pictures to record the path of sales.  One time, a manager asked me if I found everything I needed (I have no idea if he saw me take the photo), but other than that, I was pretty much left alone.

I am weary down to my soul right now.  It's hard to be an advocate 24/7 and it's a full time job to talk, record, write and post on a daily basis.  It's hard to do this when healthy, much less, when sick.

"Oh, but you don't look sick!"  Remember that?  No, I don't look sick.  But this week, I most definitely feel sick.  I am exhausted.  I've been fortunate to be mostly pain free since being diagnosed with metastatic disease, but the problem with having tumors in every single vertebra of your spine is that they can irritate nerves which can cause muscle contractions and then the rest of the back tries to compensate for whatever is messed up and irritated.  That happened to me this week, resulting in lack of sleep and lack of normal function.  Fortunately, a new medication to my growing mix, a muscle relaxant, did the job and my back is feeling much better.  I'm still tired, though, even after sleeping more than 12 hours.

Cancer fatigue can't be described.  It's not the kind of fatigue that rest can deal with.  Yes, I feel better than if I didn't get as much sleep, but I don't feel refreshed and renewed like most people would after so much rest. 

Cancer fatigue cannot be corrected by exercise.  I tried that.  I had to drop from running down to walking and now to walking only a third of what I used to do.  As I told a friend yesterday, I have to accept that I'm not going to get better in the amount of exercise I can do ... I am only going to continue to get worse.  Walking only a mile or two instead of four or five is hard enough as it is, without my thinking that maybe next week I'll be able to walk more.  Oh, I'll have the occasional "more" days, but they won't be regular, daily events anymore.

I'm weary because I know that starting tomorrow, breast cancer will be the last thing on society's mind.  We will be wrapped up in Halloween and the pink will be pushed aside in favor of black and orange, gray and purple, Elsa blue and Cinderella white.  The only pink that will be seen will most likely be on Sleeping Beauties as they go from door-to-door, trick-or-treating with friends and family.

And that's okay.  Except that tomorrow, I'll wake up and I'll still have cancer.  I'll still have it the day after that as well.  As November moves into December, the ribbons will be pushed even further back on the clearance racks and will be removed from inventories around the country. 

It seems somewhat fitting that breast cancer awareness month ends on the Day of the Dead.  But that's another post for another time.

In the meantime, the disease that is ravaging my body continues its ruthless march to shutting me down, all the while sales and profits from that same disease are calculated.  How much money was made during Breast Cancer Awareness Month in the name of "awareness"? 

Why am I on the clearance rack?  This proves what has been said about the effectiveness of Breast Cancer Awareness Month ... that it has become a seasonal event for retailers, no different than Back-to-School, Halloween, Thanksgiving and Christmas. 

Is it any wonder that I feel like a non-entity during this month?  That, for most, including many non-profits, October is merely another way to make money?  It's not about me.  It's not even about the multitude of survivors and survivor stories that flood social media.  It's about money, plain and simple. 

Breast cancer is killing me all the while the money changers count their profits.

Color me cynical.

A family has four children.  All four of them are struck with the same disease, but that the disease was found at various stages of development.  The first three children were diagnosed at earlier stages of the disease and are called "survivors" or "cured" after five years.  The youngest child was diagnosed at a later stage and is expected to die in less than five years.
 
What kind of parent would shout out, "Look how far we have come!  Thirty-five years ago, all four of our children would not have made it to five years, but now, three of them will!  Woo hoo!  We are such good parents because we've 'saved' three of our children!  Let's keep working for other families to save their children like we've saved our three!"
 
Normal parents would rejoice over the recovered health of the first three children, but they would work fearlessly on behalf of their fourth child.  They would not rest until that child could have the same results as the others.  In spite of their joy on behalf of their older children, they would be relentless in their search for a cure for the fourth child because of the great love they have for all their children.  Who would tell a parent to stop obsessing over their fourth child?  Who would tell parents that because their first three children were cured, that the fourth child wasn’t as important?  Who would tell parents to simply accept the fact that the stage of disease that fourth child had was simply incurable, so more resources should be given to other families with other children?  Who would tell parents to focus on the three who were cured?
 
But were they? The oldest child (who had the earliest diagnosis) wakes up with a cough that can't be shaken off.  Weeks later, the parents take the child to doctor after doctor after doctor who look for some kind of explanation for the cough wracking the child's body.  Finally, a doctor checks for the original disease and discovers that it's not only in the child's lungs, but has spread all over the child's body.  That child, too, is expected to live less than five years.
 
"We don't understand. We thought our child was cured," cries the parents.  "We were told our child was cured.  Why were we lied to like that?" 
 
The fourth child defied expectations and lived for eight years.  The first child, diagnosed with returning disease, died shortly thereafter.
 
Instead of burying one child, this family buries two.  They died within weeks of each other.  
 
Fear reigns in the hearts of this family as they wonder if their other two children are safe.  The parents push and push and push for more research into this disease because it's been proven that no one is safe.  If one of their children can have a recurrence, then all of them can.  They don't have time to wait for walks and relays and shopping to provide the much needed funds for research.  They hit the streets, begging people to help save their children's lives. 
 
The crowds walk by them, saying, "We put money into a pink box at our office.  We were told that the pink box fund is all we need to do.  We received a pink ribbon for putting money into the pink box.  Pink is everything you need for your children!"
 
The parents wail, "We want more than pink!  We want our children to live!"
 
"You need to stop being so negative!  Look at all the good pink has done!  Your two children are alive because of pink!  Don't be such a hater!  Don't be so bitter.  You need to accept your lot in life and get over your self-serving ways.  It’s much more important that other families’ children are saved."
 
Tears run down the parents' faces.  "How did it come to this?  Why are we being told than one child is worth more than the other?  We could easily shout that our children are 'survivors,' but we now know that there is little comfort in that word."
 
The parents lift their heads and continue their crusade.  They want their children to be safe and to be able to live without fear.  They want no other family to have their experience.  This disease must be stopped and in spite of the fatigue and weariness that invades their very souls, they continue their mission.
 
No one is safe.  Everyone who has been impacted by this disease should be involved in stopping it in its tracks.  No one should feel safe because no one is.
 
Which child would you choose?

I don't wear much makeup besides eye makeup and lip gloss, but I have my share of vanity issues.  One of them is regarding black hairs growing on my chin.  I just don't understand how my eyebrows can be thinning so much that I'm now drawing them on, yet the black hairs on my chin are multiplying on a regular basis, along with those that pop up above my lip as well.  I have had these little hairs most of my adult life (and even referred to them as runaway eyebrows), but this is quite ridiculous.

I took a mirror over to a window so that I could get a closer look.  While there, I noticed the fine lines that have appeared around my mouth, along with the sagging skin below my mouth.

I stared hard ... and I thought about feeling sad about about these lines and sags and changed my mind.  I LIKE the idea of aging and I'm going to embrace these wrinkles and sags.  However, I'm still going to yank those black hairs out as long as I'm able to see them enough to get the tweezers on them!

Like most teens, my high school daughter is quite busy.  Therefore, when she asked if we could spend the afternoon together, I leaped at the chance and off we went.

My daughter likes to play with photography and wanted to go to the beach to watch the sunset.  All of our beaches are about an hour away from us (we live near San Francisco) so I headed towards one of them.  As I was driving, my daughter suggested a beach north of San Francisco, so we decided to go there instead.

We arrived at the parking lot for Muir Beach mid-to-late afternoon and decided to hike to Pirates Cove, a smaller beach further up the coast.  Only two miles, what's the big deal with that?

1.  My daughter was only wearing flip-flops.  Not the best of hiking shoes.
2.  In order to get to Pirates Cove, one has to hike up, up, up and down, down, down, through hills and ravines.  It was hard work and we averaged one mile per hour.  Sigh.  The total elevation change with all the ups and downs was close to 1200 feet.

Note to self and daughter:  When an afternoon adventure pops up, make sure you throw your hiking poles into the car and that you throw tennis shoes into the car!

I had to rest several times.  I would look ahead and set intermediate goals for myself.  I would count to ten over and over again as I marched along.  At times, I felt like I was going to throw up, but I kept pressing on.

Finally, we reached the cove, only to discover that it included a serious scramble down to the beach.  Hmmmm, if we were going to watch the sunset, that scramble back UP could be a challenge.  We decided to keep going and hiked to a point above the cove.

And above meant lots and lots of wooden stairs cut into the hillside.  And then, even more uphill climbing.  Finally, I reached my limit.

"Rachel, I'm done!  I can't go any further."

"Mom, it's just a little bit more.  Come on, you can do this!"  She was about 100 feet above me.

One step at a time ... I made that 100 feet.  She then went down a bit to a ledge, but nothing she could say, could convince me to go down to that ledge with her.  I knew that whatever went down had to come back up in order to get back on the trail!  Nothing doing ... I enjoyed the sunset from my perch above her.

The sunset was stunning, gorgeous and breathtaking.  Both Rachel and I were in awe of the beauty of our world and we both voiced the concept of insignificance.  "When I look at the skies and the world around me, what are humans that you are mindful of us?"

My daughter got all the shots she wanted and then came up to join me to watch the sun descend into the ocean ... or watch the appearance of the sun sinking.

As I watched the sunset, I couldn't help but think of how it applied to my life with cancer.  It was hard work to reach this cliff with literal ups and downs.  I reached a point in the journey where, for me, the benefit of a slightly better view couldn't outweigh the side effect of having to walk back up to a view that was just as good. 

As Rachel and I made our way back the two miles to the parking lot, we made better time because we were more familiar with the path and knew where we were going and how to measure distance to goal.   It was still hard and I still had to rest, but knowing what was coming was helpful. 

We lost all light with about a half mile to go.  We used the dim light of our phone's flashlight to illuminate the path.  It didn't matter if we couldn't see clearly ... the small amount of light was good enough as the path was familiar.

And so it goes with treatments.  They have lots of hard ups and downs, and sometimes I feel like throwing up,  but as long as the benefits outweigh the side effects, they are worth it.  However, at some point, I'm going to reach that pinnacle and decide, "This is it.  This is as good as it gets for me and another treatment that gives me slightly more time won't be worth it."  Then, I'll start the descent back to where I came from, the security of God's arms.

The sunset of my life is stunning, gorgeous and breathtaking.  While I am at peace with the idea of dying, this doesn't mean I don't have a voracious appetite for life.  It doesn't mean that I don't have a passion for living and a desire to walk on life's path for as long as possible, even when it's dimly lit.  It doesn't mean I don't hold out cautious optimism that the next treatment will be the one to make a major difference in extending my life without horrible side effects.  It doesn't mean I can't hold your hand and walk with you, back into familiar territory.  This doesn't mean that you can't hold up a small light for me to drive out the total darkness ... and that you can't help guide me towards the end.  It doesn't mean that I don't have more sunrises.

What it does mean is that I am alive now, pursuing after God with every fiber of my heart, finding my peace both from and with God.  As I greet each sunrise with a breath of gratitude for waking up, one day, I'll wake up in God's physical presence and have the same breath of gratitude and have the most exhilarating  sunrise of all.   Until then, I'm going to continue to enjoy the sunsets and the sunrises here, one day at a time.

Ask anyone what someone with cancer looks like and you will most likely hear, "bald" as the number one answer, with "sickly," or "thin" close behind. 

During the month of October, it's hard to miss the bald women wearing pink everywhere you turn.  Promotion after promotion after promotion features that shining bald head ... or that of very short hair that is growing back after being bald.  The morning talk/news shows are notorious for having crowds and crowds of bald women outside their studios in order to show their support for (exploit) breast cancer "awareness."

I participate in a cancer forum and a frequent question that pops up is "Should I shave my head in solidarity with my family member who has lost their hair due to chemotherapy treatments?"

My response is typically, "Why?  What would shaving your head accomplish?"

Typically, the questioner is a young person who has the idea that if someone voluntarily shaves off their hair, then the person who has lost their hair due to sickness won't feel so alone.

I do support such actions when a young child is involved.  Other than that?  Such a move strikes me as attention-seeking behavior that directs attention AWAY from the one with cancer and towards the healthy person.

Imagine this conversation:

"Why did you shave your head?"

"Oh, I did it to support my friend, Sally, who has cancer!"  (Usually spoken in a breathless voice, or a hushed tone.)

"Wow, what a wonderful friend you are!  Sally is so fortunate to have you!  You look absolutely beautiful!  I could never do something like that!  You are so brave!"

End of conversation.

What did that do for Sally?  How did that make Sally feel less alone?  The shaver's hair will start to grow back immediately ... Sally's hair won't start to grow until after her last chemotherapy treatment.

I have to admit, I've never really been too obsessed with my hair.  It's there.  I have a lot of it and if I get a bad haircut, it fixes itself in a few days.  It grows fast.  When I lost my hair, it physically hurt because the hair follicles were so tender.  I figured I'd have fun with my bald head and never worried too much about it.  Because I lived in China at the time, I did wear a hat whenever I went outdoors, but I never bothered with a wig.  The idea of a temporary hair loss didn't bother me.

I do know that other women feel very differently and I know we all cope however we can.  My mother had extremely long hair when she was diagnosed with breast cancer and she considered her hair her crowning glory.  She hated losing her hair.  Absolutely hated it.  She died bald and I know that troubled her.  We do not have a single picture of her without her wig. 

I can't stand the fact that society has indoctrinated us women that our appearance is the most important thing about us.  One of the first things a newly diagnosed woman is told about is a program known as "Look Good, Feel Better."  Oh, the irony.  A woman is handed a potentially fatal diagnosis and in the next breath, she's told about makeup and wigs.

Men aren't given this information.  Sexism, anyone?

There are those who run fundraisers by shaving heads.  I've never quite understood that ... people making donations in order to see someone else shave their heads.  It's that "You have to earn my donation" mentality that has taken over philanthropy in North America (I can't speak for the rest of the world) that fuels such events.  It's not good enough to just give ... we have to be entertained before doing so. 

Today is Be Bold, Be Bald Day.  One buys a skin-toned swim cap through the organizer, decorates it however one desires, wears it on the third Friday of October (This year, that's today, October 16), collects money from donors and submits the funds back to the organizer who then sends the money to the charitable organization of the donor's choice.  (There are about 40 groups to choose from.)  Last year's Form 990 revenues for the group indicates they raised $161,647.  I do not know the percentage that was distributed to the organizations, but the claim made on their site that due to donations beyond the fundraiser itself, "more than 100% of the money raised has been distributed."

I don't really mind fundraisers.  But this is the answer for the FAQ, "Why should you do this?" 

"To raise money for cancer charities, honor loved ones, and gain a little more understanding about one of the challenges many people with cancer face."

Ah, that would be a no.  Wearing a swim cap has absolutely no relationship with losing hair.  While losing hair can be considered traumatic, wearing a swim cap doesn't even come close to the experience.  Wearing a swim cap doesn't reflect the loss of eyebrows or eyelashes and the eye irritations that result from that.  Wearing a swim cap doesn't reflect the loss of nose hair that results in a constantly runny nose.  Wearing a swim cap doesn't reflect the pain of hair trying to grow back and follicles getting infected.  (I had so many skin infections from hair follicles!)  Wearing a swim cap doesn't reflect losing all your arm pit hair or the hair on your arms and legs (no shaving for a while!).  Wearing a swim cap doesn't reflect the loss of pubic hair.  (Yes, it's true.  Very few people talk about that.)

What it does is take the most visible side effect and place it front and center on healthy people.  And while it can be an unpleasant side effect, it's not the worst side effect.  I don't wish diarrhea, constipation, loss of taste, insomnia, bone pain, light sensitivity, hearing loss, chemo brain, nausea, fatigue ... the list goes on ... for anyone.  (To be honest, to me, the worst side effect is crushing fatigue yet being unable to sleep.  That just sucks.)  Why would I wish baldness upon anyone?  Why would anyone want to take any of this on?

The whole bold, bald, beautiful thing then makes people look at me ... a woman with terminal cancer ... and say, "But you have hair!" 

"How can you have cancer and still have your hair?"

"How can you be on chemotherapy and not be bald?"

"I don't understand how you can claim to be dying, yet still have your hair!"

"Everyone knows that people with Stage IV cancer are in their last days and they are sickly and bald.  You are lying."  (Yes, I've been accused of lying.)

The bald head is another example of how awareness isn't the same thing as education.

The reason many Stage IV cancer patients still have hair is because the option of a cure is no longer on the table.  Harsh chemotherapy agents (that attack fast growing cells, including hair follicles) are not used as often because the goal is quality of life versus saving life.  Also, not all chemo treatments cause hair loss, especially when the treatment is extended over a long period of time versus a short, intense time period.

I would gladly go bald for the rest of my life and never wear a wig if that meant that the cancer was gone from my body. '

Yes, I have hair.  I like it short and I'm likely to get it cut within the next couple of weeks. 

Being bald was such a minor challenge for me.  What cute little program can be thought up for my greatest challenge ... staying alive?

You keep hearing the word, metastasis ... or metastatic.  What exactly does it mean?  What's an easy way for me to understand how a tumor can spread throughout the body years later?

It's not a perfect explanation, but it's a start.

I'm not very techy, but I made a video.  It's a bit too long (10 minutes), but I think it gets the message across.  Thanks for watching.

  We are six days into Breast Cancer Awareness Month (BCAM), aka Pinktober.  The cynical among us don't refer to it as awareness as we consider it more of a  "corporate profiteering off a deadly disease" month.

We here in the United States are truly viewing the world through rose-colored glasses as pink products and pink ads are everywhere.  The NFL has donned the traditional pink they wear at the beginning of this month (I don't think they wear it all month long) and races and relays "for the cure" are happening all over the nation.  One has to live in a cave to avoid the pretty pink of this time period.

Sigh.

This is my fourth October with breast cancer.  I've long struggled with how to be an effective advocate during the month, recognizing that many who wear pink do so in honest support of a loved one.  I don't mind that at all ... I just don't want them buying pink thinking that it funds research in any meaningful way.

During October of last year, I wore specifically designed tee shirts that had my logo on the front and some challenges on the back.  Each shirt had the line, "I am Stage IV.  Talk to me."  I worked more on a "stealth ninja" approach in how I handled pink product displays and to be honest ... my approach didn't work at all.  No one spoke to me.

I changed my approach this year.  I decided to be more personal and informative and to use imagery in how I communicated, both in words and in walking around.

I designed different tee shirts and brought them to the same shop that made my tee shirts last year.  I printed out what I wanted each shirt to say and worked with a young 20-something man at the layout table.  He was pleased that I had printouts of everything so that there would be no misunderstanding.

Three of the shirts have on the back, "What about the rest of me?" along with an image of skeletons with red coloring showing where I had breast cancer.  There is one small yellow oval representing my liver and it has four red dots in it representing the four tiny lesions in my liver that are assumed to be breast cancer. 

"What about the rest of me?" is in response to what I have on the front of the shirts.

Shirt one:  The Ta-Tas were saved, but ...
Shirt two:  No cancer here, but ...
Shirt three:  Second base was saved, but ...
Shirt four:  I'm seeing red (the back of the shirt just has the image on it with the red highlights.)

The young man quickly worked up the back of the shirts, but when we flipped them over to work on the front, a confused look cross his face.

"I'm not sure I get what these mean."

I explained that the fronts told the story that I had no cancer in my breasts.  He cut me short, "That's great!  Wow, that's just great!  That's what we're working for, right?"

He was so enthusiastic and authentically pleased.  I showed him the back of my shirt again with the images.  I pointed out where I had breast cancer in my body.

"I don't understand.  I thought if you didn't have breast cancer in your breasts that you didn't have breast cancer anywhere.  I thought the goal was to have no cancer in the breasts."

When I went to pick up the shirts, the woman who owned the shop was there.  I had worked with her last year.  Her face lit up and she exclaimed, "I remember you!  Look at you!  You look so pretty and healthy.  You must be cured!"

I unfolded the shirt and said, "Unfortunately, I'm not.  In fact, the cancer is worse."  I showed her the image and pointed out the cancer.

She looked at the picture and she looked at me and said, "I don't understand.  How can this be?  How can this be breast cancer throughout your body?"

A customer in the shop asked, "Are you on kidney dialysis?"

"No," I replied.  "My kidneys are fine for now."

"My mother died of breast cancer in her kidneys.  She also had big lumps on her back.  What's the deal with that?  Were those tumors?"

This woman was angry ... very angry.

I explained that it was likely her mother had cancer that spread to her skin and formed tumors on her back, but that, of course, I didn't know for sure.

The woman continued in her fury.  "I don't understand.  I don't understand how someone can die of breast cancer 12 years after they first had cancer and after they had no breasts.  I don't understand how breast cancer can be in her kidneys or how breast cancer can form those big lumps.  I just don't understand."

And that's the problem.  I'm finding that people honestly and truly don't understand.  When they see all the tantalizing campaigns that make breast cancer cute and funny, they genuinely believe that the answer to breast cancer is no cancer in the breasts. 

"Save the ta-tas," "Save a rack," "Check your headlights," "Save your bumps, check for lumps," "I heart boobies," "Save second base," "Breasts are man's real best friends," "Save the melons," "Save a life, grope your wife," "Cop a feel," etc ... these are all designed to insinuate that if these slogans are followed, then the beloved female in your life will be safe.

One friend told me that if her "Save Second Base" tee shirt reminded one woman to get a mammogram then wearing it was worth any offense that it may cause others.

I've repeatedly heard, "That mammogram saved my life!" when a lump has been detected and breast cancer treatments begin.  The unfortunate truth, though, is that mammograms don't save lives.  They allow for earlier treatments to begin, but until research has found a way to predict which tumors will be permanently obliterated, never to return, then it doesn't matter what a mammogram finds.  (Note, I am not saying don't get a mammogram.  I am saying that early detection is not the cure-all that it's been made out to be.  There are too many women who had early detection who have become metastatic and have died.  This is the truth that is not told.) 

My friend, Sheila, was furious when she was diagnosed with metastatic disease four years and eight months after her early stage primary diagnosis.  She was absolutely livid because she believed that if she made it to the five year point, she would have been cured.  It took a while for her to grasp that there's nothing magical for the five year point for most hormone positive cancers.  On top of the shocking news that she had metastatic disease, she also found out that her disease had changed over the years and had become triple negative.  It marched relentlessly throughout her body and she died 13 months after she was diagnosed metastatic.  (But you know what?  She's still listed as a Stage II survivor because she lived five years after her Stage II diagnosis.  That's another post for another time.)

Another friend was diagnosed with Stage I breast cancer six years ago at age 45.  She had a double mastectomy and radiation for her tiny 6mm tumor.  (That's about the size of a pencil eraser.)  Has been on Tamoxifen ever since.  Fast forward to now ... extensive metastatic disease in her chest lymphatic system and disease in her lungs.  But, according to statistics, she's included in those 98% survival statistics that you see advertised all over the place during October.

Their stories are two of too many.

I don't understand.

I don't understand how this is acceptable.  I don't understand why the sea of pink puts out a message of distortion.

Have you seen the ads trying to discourage people from smoking?  They portray the horrific truth of lung cancer.

Have you seen the ads about breast cancer?  They're pretty in pink and many of them are sexually tantalizing.

I don't understand.

What's wrong with this picture?