Yesterday was my daughter's sixteenth birthday.  I showed pictures of her throughout her life and mentioned how her life from birth has been measured in minutes, hours, days, weeks, months and years.

When someone is diagnosed with metastatic breast cancer, the measurement of life immediately begins to work backwards.  We ask, "How many years do I have left?" or "How many months do I have left?" or "How many weeks do I have left?" or "How many days do I have left?" which becomes family members wondering "How many hours?  How many minutes?" which becomes death.

This is an unpopular topic both in and out of metastatic breast cancer land.  Whether we like it or not, a mets diagnosis is a death sentence.  There is no cure and while those with metastatic disease are living longer than in the past, those same are still dying at an alarming rate.  The real number (approximately 40,000 per year in the US alone) hasn't changed in decades, even if the percentage of deaths per 100,000 has declined in that same time period.  I'm not quite sure how that works out, but that's beyond the scope of this post.

Many want to challenge someone with metastatic disease (of any cancer) and the death sentence they've been given by saying, "We're all going to die.  Your situation is no different than anyone else."

I strongly beg to differ.  There is a huge difference between living with the average expectation of having a typical lifespan of 80 years versus being told that only 2% of people in your same health condition survive and that only 25% survive five years.

The death penalty for crimes still exists in many countries throughout the world.  Japan's approach to how they handle their death row inmates differs from other judicial systems.  When a convicted criminal is sentenced to death, he/she (nor their family members) is not told the date of their execution.  They are placed on death row and remain there days, weeks, months or years.  

They do not know when they will die until hours before they are put to death. 

Japan's government claims this process is compassionate and prudent in that it spares the prisoner the "anguish" of knowing when death would occur.  International human rights agencies claim the opposite ... that this is cruel, inhumane and degrading punishment resulting in the development of severe depression and mental illness among death row inmates.  In May 2008 there were 25 inmates who had been on Japan's death row for over ten years and there were four inmates who were in their 80s.

If international human rights agencies believe it is "cruel and unusual" punishment for a death row inmate to not know the time of their impending death, then wouldn't you think the same adjectives apply to those who have a terminal diagnosis?  Wouldn't it be clear that living with the indefinite nature of impending death is more similar to Japanese death row inmates more than the general population expected to live a normal life span?

This is why the response, "We're all going to die," is an inappropriate response to the laments of a metastatic patient.  Do I have another sixteen years to spend with my daughter?  Likely not.

How many years do I have left?
How many months do I have left?
How many weeks do I have left?
How many days do I have left?
How many hours?
How many minutes?
How many ...?

My daughter is sixteen years old today.  I'm both stunned and overjoyed over these last sixteen years.  I never knew what having a child would do to my heart and soul.

A recent internet commercial for a clothing company noted that a baby's life is measured in moments, months and then milestones.  That caught my ear. I don't watch these commercials as they air before a video I'm waiting to see, but I do hear some of the words ... and those words penetrated my psyche.

I remember when my daughter was moments old.  I remember when she was hours old ... and then days old ... and then weeks old ... and then months old ... and eventually, years old.  The years kept on coming until they are where we are today.  Sixteen of them have passed by in the blink of an eye.

She's given me permission to share these photos.

We all have stories of the last sixteen years of our lives.  Not all of them include marriage and children, but I can guarantee that all of them include relationships.  It's our relationships that keep us going.  It's because of love that we want to live.

On January 20, 2016, Prevention magazine ran an article entitled, "What Life is Really Like After Breast Cancer -- Joan Lunden Gets Personal."  It's her story and she's entitled to share her story as much as anyone else.  The very fact that she's a celebrity probably gives her "more" of a right as she commands a greater audience and greater ear than someone who who writes a tiny little blog in the huge arena of the Internet and blogosphere.

Today, the Bend Bulletin newspaper (Bend, Oregon) reprinted the Prevention article.  I didn't see the original article in January as I was in the midst of trying to stabilize my own health in living with metastatic breast cancer.  However, I read the article this morning and I'm appalled.

In my opinion, when someone is a celebrity, they have a certain amount of responsibility to be knowledgeable about the topics their celebrity status platform gives them.  I do believe Joan Lunden is learning what she can about breast cancer in general, but she steps into dangerous waters when she tries to give voice to metastatic breast cancer without being intimately involved in the metastatic community.

Do you see the condescension in this observation?  "But a positive attitude will certainly make the time you're here on Earth more palatable and will certainly keep the fight in you to keep fighting to live until maybe we even find a better treatment for you."  

Seriously?  Translated into plain English:  "Smile!!!!  Be positive!!!!  You are dying but you need to remain positive about your life so that you can keep fighting until MAYBE we even find a better treatment for you." 

My friend, Linda, died yesterday.  My friend, Helen, is in her last days.  Sunday is the first anniversary of Michele's death.  I've lost 17 personal friends (real life, not online) in the last three years to metastatic cancer, most of which whom had metastatic breast cancer. 

Paul Kalanithi, MD, wrote here:  " After the diagnosis, I knew that someday I would die, but I didn’t know when. But now I knew it acutely."

There is extreme value in appreciating each day that we have.  However, there is something extremely dismissive for someone to tell a dying person to be positive because that will "keep the fight in you to keep fighting to live." 

Additionally, Lunden goes on to say, "There have been studies that show that patients who have a positive attitude and are optimistic have a better immune system, and they heal better, they recover better." 

Notice some key words there?  " ... they heal better, they recover better." 

Metastatic breast cancer patients do not heal, nor do they recover.  They die. 

Being positive does not expedite better treatments.  Using your celebrity voice to exhort others to invest in meaningful research into metastatic disease is far more meaningful than exhorting dying patients to be positive about their lives, however short those lives may be.

(Oh, and by the way, there are studies that show that having a positive attitude in the face of cancer does absolutely nothing to increase survival chances.)

I had a marathon day at the infusion center Tuesday.  I was scheduled for both chemo and a blood transfusion and in spite of my being the first patient of the day, there was lots and lots of waiting involved.

My blood draw went fine and results were almost immediate (Like I said, I was the first patient.).  I sat in the waiting room with other patients as I waited to be called for my actual treatments. 

The television set was on with non-stop reports from Belgium.  I was interested in the reports as my husband is currently in Europe.  However, I'm not one who has to have television reports as I'd rather read the news than see/listen to it.

I was caught a bit off guard, though, when I heard the following conversation between a husband and wife:

"You know, these terrorism reports make me sick.  We are going to hear about this for days and days on end.  Everyone will be talking about this and talking about nothing else."

"I know, I know."

"It's as if people only care when a few people die in a dramatic fashion.  I mean, look around us ... we're in an (expletive) cancer waiting room and thousands and thousands of us are dying every year and no one cares."

I glanced at the couple.  The husband was the one who was most upset.  He went on to repeat:

"We've become numb.  It's as if everyone expects to get cancer at some point in their lives and there's no use in trying to stop the tide.  I wonder if we'll reach the same point when it comes to these type of terrorist attacks.  That it happens more and more often and we weep for a day and then we keep on living life as before.  It’s as if our deaths don’t mean anything."

Neither this man or his wife had breast cancer.  He had lung cancer and he was quite angry about it.  I was then called back into the infusion room and didn’t get to talk to him directly.

I ended up being in the infusion room for nine more hours.  While there, one of my beloved friends came in to say goodbye to the infusion room staff.  She's not moving away and she's not changing treatment centers.  She's dying and she met with her oncologist (We have the same oncologist.) where she made the difficult decision to stop treatments as there's nothing left for her.  She has been living with metastatic breast cancer for three years, all the while with gastro-intestinal metastases which have further spread throughout her body.  She is absolutely exhausted.  She is unable to walk and she is unable to eat.  She is too thin and she can barely talk due to the tumors in her esophagus. It was very obvious that she has disengaged from life and that she's ready to let go. 

She will die and we will grieve.  Our hearts will break because we love her and we don’t want to let her go.

But life will go on.  It should go on ... it shouldn't stop for everyone simply because it stops for her ... but you know what?

Just as the man in the waiting room said, “We’ve become numb.”  Helen’s death, while noticed and marked by those of us in her world, will go down in the record books as a member of the metastatic de novo club and a member of the 40,000+ who die each year in the United States.
 
I don’t have the time nor the energy to do everything I want to do in the world of advocacy.    Like my friend, Helen, I’m disengaging from events in life as I prioritize how to spend my time.  There are things I have to leave for others in the future.  This doesn’t mean that I don’t care passionately about these things, but that I leave them in the good hands of others.    
 
There are many different approaches in dealing with the very real problem of early stage breast cancer and metastatic breast cancer.  (Yes, they are two different beasts.)  Even as someone with metastatic disease, I struggle with who is doing what and how they are doing what they are doing.  I feel like I’m on a school yard waiting to be asked to join a team, yet not being sure which team I want to be a part of.  My solution to the school yard scenario was to walk away and not join any team.  (I’ve long described myself as a non-joiner, much of which resulted from my elementary school years.)  In many ways, I feel like that’s what I’m doing now as well.  Not joining.
 
I still cling to the mantra, “one woman, one voice, one day at a time.”  Can my one voice make a difference in the big picture?
 
Maybe, maybe not.  If nothing else, I’ll make a difference in my little corner of my world.  I don’t want to become numb to the pain around me. 
 
I’m not numb.  Being numb means to feel no pain.  I’m in pain every single day.  Not physical pain, but emotional and mental pain.  I’m tired of losing my friends and I’m tired of misinformation.
 
I don’t want you to become numb either.  I need you to be vocal in every situation possible to not only bring awareness, but to truly educate.  Please be watching my website, iwantmorethanapinkribbon.com for resources you can use.  In the meantime, you can always ask questions here.

I've had a difficult and challenging month.  The dishwasher broke; I wrecked my car; my cat got a gum infection; my mother-in-law's dementia noticeably increased; when I tried to get a new dishwasher installed, I was told I needed plumbing repairs done first ... and I got halfway through the repair project before I realized I couldn't do it myself; my husband has traveled out of country for close to two weeks; I've driven myself to my weekly chemo sessions, my children to their ortho appointments and my mother-in-law to her dental appointments; I've tried to maintain a sense of normalcy in my teens' lives in spite of the fact that this month hasn't been "normal" at all ...

And a friend posts this sign from her oncologist's office.

Yes, this was in an oncology clinic.  Just imagine a patient waiting for test results ... that come back cancerous ... seeing this board and thinking that s/he has to have a good attitude in order to not have a bad day.

I think if it had been in the clinic I go to that I would have blown a gasket. 

My attitude has absolutely nothing to do with whether or not I'm having a good or bad day.  Why can't we just give people permission to have bad days?  Why do they always have to be good? 

Stop bullying people to be a part of the Cult of Optimism that permeates North American society.

If there were any "true" statement (for me) to be said on a white board, I think it would be, "The only difference between a good day and a bad day is a good night's sleep."

I'm exhausted and will likely get a blood transfusion this week ... that will help negate bad days as well.  However, just stop with the change-your-attitude crap.  This white board literally made a bad day even worse.

I'm so tired of me.

I imagine my friends are tired of me as well.

I'm tired of seeing and experiencing life through cancer. 

I'm tired of thinking that what I know about cancer trumps what others know about cancer.

I'm tired of thinking my opinion is best.

I'm tired of thinking I'm always right.

I'm tired of interpreting others' words as being directed towards me or towards my life experience.  That's paranoia.

I'm tired of thinking the universe is about me.  That's even more paranoia.

I'm tired of thinking everyone should be sensitive to my situation.

I'm so tired of me.

I beg of you all to please forgive me.  I'm still under construction, even with the flawed DNA that my body has become.

Four years of non-stop treatments have altered not only my body, but my mind and probably my thinking as well.

I'm so tired of me but I'm not tired of you. 

Today is St. Patrick's Day and I pray this prayer:

May the Strength of God pilot me. 
May the Power of God preserve me.
May the Wisdom of God instruct me.
May the Hand of God protect me.
May the Way of God direct me.
May the Shield of God defend me.
May the Host of God guard me.
Against the snares of the evil ones.
Against temptations of the world 

May Christ be with me!
May Christ be before me!
May Christ be in me,
Christ be over all!
May Thy Salvation, Lord,
Always be mine,
This day, O Lord, and evermore. Amen.


I'm so tired of me. 
I'm so tired of.
I'm so tired.
I'm so.
I'm.
I'm.
I'm so.
I'm so tired.
I'm so tired of.
I'm so tired of me.

Please, Lord, be seen in me in spite of my failures.

We all live in different moments of our lives.  My mother-in-law, now in her mid-to-late 80s, is most comfortable living in the past.  Life is comfortable there because it's what's familiar and it's what she knows best.   The present can be confusing as she is living in a relatively new place.  (She and her husband moved next door to us 18 months ago.)

My two teenagers live in the present and in the future.  They are very much enjoying their lives now, but they do look ahead to college and life afterwards. 

I live in the twixt-and-tween.  I look at the past and wonder where time went and I look to the future and wonder if I'll be here.  Next month, I'll be taking the first college tours with my daughter and I can't help but question if I'll be around to help her move into college.  I think my odds are better for her as she graduates from high school in 2018, but for my son?  It seems more iffy.  He doesn't graduate until 2020.

My husband has to live in all three time scenarios.  Working in medical devices means analyzing what has worked in the past and projecting to the future to improve on such things.  Yet, he has to live in the present to deal with product issues and of course, living in Silicon Valley in the midst of a global economy, everything has to happen NOW!

We constantly ask ourselves, "How do we wish to spend our time?"  It's never an easy question and it's never an easy answer.  Demands fly at us from every angle and the idea of rest and relaxation is a hard one to grasp.  Even in the midst of dealing with a terminal illness, I struggle with the idea of doing "nothing," but that's another post for another time.

Recently, I had the incredible joy of watching a hummingbird nest.  I have no idea when the nest was built ... I missed that part ... but I got to see a special part of nature unfold before my eyes.  I'll let the pictures tell the story.

I saw ordinary life unfold right in front of my eyes.  The average lifespan of a North American hummingbird that makes it out of the nest is 3 - 5 years.  I have no idea if "my" two little birds will make it, but the lessons they taught me are invaluable.

There is a plan.  I just can't imagine that something as intricate as a hummingbird just "came to be" by chance. 

Tiny things can bring great joy.  This joy can be from little birds to tastes of food to company with friends.  Great joy can come from a good night's sleep, a respite from pain, another sunrise.  A crafting project, a walk in the rain, a dash in the sun ... all can bring joy.  A drive in the country, a Broadway show, a darkened movie theater ... joy for some, horrors for others.

We are all different.  What brings us joy differs from person to person.  No one can dictate what should bring joy to another.  However, I encourage you to find something that brings you joy today.  If you can, take a lesson from a hummingbird. 

Once upon a time, a long time ago, I had a fascination with numbers.  I loved working with numbers and I loved learning how to work with them, especially in the world of statistics.  I dreamed of a career that combined law and statistics and set about to become a courtroom statistician.
 
Then, life happened.  While I did well in my statistics courses, I tanked in computer programing and calculus.  FORTRAN was the death of me and I still have nightmares over card readers, !JOB and !END and trying to figure out what was supposed to happen in between those two commands.  I made a D my first semester of FORTRAN.  I retook the class and I think the graduate assistant simply gave me a C to make sure I stayed out of his class.  I was awful at programming and was just as bad in advanced math.  I have eight hours of Ds in trigonometry and calculus.  
 
I switched over to business and found I could still use statistics and all was not lost.  Accounting was a new art form and the concept of marketing entered my vocabulary and I ended up graduating with a Bachelor of Science in Business Administration with a major in marketing management.  I enjoyed that for quite some time and had a career in business until my daughter was born in 2000. 
 
My last statistics class was over 30  years ago.  I’ve forgotten more than I ever knew, but I do remember a couple of key factors.  In a non-clinical setting (i.e. marketing), you can make statistics say/mean almost anything.  In 1983 I wrote a paper on how to lie with statistics and I learned how easy it was to make something look much more important than it really was.  That gave me a healthy mistrust in simple numbers without having substance behind them.  Rex Stout said it best in his novel, “Death of a Doxy,” when he wrote, “There are two kinds of statistics, the kind you look up and the kind you make up.”
 
Fast forward to present time.  Believe it or not, I’m not completely anti-Komen.  I believe that local Komen affiliates are providing seriously needed services in their local communities for people (mostly women) who have been diagnosed with breast cancer.  I have absolutely no problems with local affiliates being strong supporters and for being the first responders for the newly diagnosed who have no idea where to turn when they hear the words, “breast cancer.”  Because Komen is such a marketing juggernaut, that name is typically the first resource a patient may think of.
 
HOWEVER (that’s a big BUT), my admiration ends right there.
 
Where do the local affiliates get their money?  Their funds typically come from locally managed “Race for the Cure” or “Relay for the Cure” events.  Note the key words … “For the Cure.”
 
Last year I was in Philadelphia in April, a few short weeks before their Mother’s Day “Race for the Cure.”  This year, I’m returning to Philadelphia at around the same time and I’m expecting to see the same signs promoting the annual affair.      
 
Note these quotes in encouraging people to fundraise:  “Remember, coming and walking on Mother’s Day is an important way to get involved… but it is your fundraising that drives our power to save lives and cure breast cancer!”
 
In the Frequently Asked Questions, “Where does the money go?” is near the top.  The answer? 
 
“We (Philadelphia affiliate) keep 75% of money raised here at home to support our work in 15 counties. We contribute 25% to breast cancer research.”   
 
I’ve seen that 25% statistic thrown around quite a bit so I decided to pick up the phone and call the Philadelphia affiliate office to find out exactly what it meant.  Elaine Grobman (CEO of Komen Philadelphia) graciously spent time answering my questions and was very patient with me as I pushed to understand exactly what she was saying, as well as my desire to understand what is stated in Komen’s national records.
 
According to Ms. Grobman, every Komen affiliate submits 25% of their income (raised through races, relays, corporation donations, sponsorships, private donations, etc.)  to Komen national office in Dallas.  It was my understanding that those monies were put into Komen national general funds.  However, Ms. Grobman corrected me in that local affiliate payments to the national office are designated by contract to ONLY go into research.
 
Interesting.  I hadn’t heard that before.  I started digging around other local affiliate offices statements and noticed that they were saying the same thing … that local affiliate payments did not go to national administrative costs and were only used for research.  The Philadelphia office sent $625,000 to the national office, all of which went into research of some kind.
 
This makes me feel even better about local affiliates.  They are supporting their immediate community, yet investing in research to go beyond their local community.  It’s unfortunate, though, that the national office is not following through on their commitment to end breast cancer. 
 
Here’s where it gets ugly.  Komen is very, very transparent about where their money goes.  They like to throw around words like “largest funder of breast cancer research outside of the federal government” but they don’t acknowledge how much of their budget does NOT go to research.
 
Here’s some figures to consider.  I’m focusing on the latest figures to date, fiscal year ending March 31, 2015.  (You might need to zoom in to be able to read the numbers more clearly.)

According to this statement, Komen spent 16.58% of their total net public support and revenue on research.  But is that true?  Are those figures correct?  Consider this breakdown:

Look closer … Figure 1 shows that $41,498,217 was spent on research.  One would assume that meant pure research dollars.  Figure 2 shows that awards and grants for pure research was $30,174,566.  Under 75% of the research breakdown was actually spent on research awards and grants.

Let’s compare Figures 1 and 2:

Looking at the top figure, one would assume that 16.58% of the total net public support and revenue was spent on research.  The truth is, only 12.06% was spent on research awards and grants.

It gets worse.

Affiliate payments for the year ending March 31, 2015 totaled $20,910,092.  This means that the local affiliates funded 69.29% of the research awards and grants.  Total awards and grants were $30,174,566 (See Figure 2), meaning that the national office funded $9,264,474 in pure research awards and grants.
 
How much public support and revenue did they declare?  $250,276,362 (See Figure 1).  (Although, their tax form 990 declares gross receipts to be $279,485,608, but let’s stick with the consolidated statements to be consistent.)
 
If we subtract out the affiliate payments from the public support and revenue, the balance is $229,366,270.  This means the percentage that Komen national office actually spends on pure research grants and awards is 4.03%.
 
I’m not an accountant and I’m not a statistician.  However, I can look at these numbers for a single year and see that the majority of Komen’s national funds are not going “for the cure.”   
 
What does it take to change?  Last weekend, my smoke detector batteries died and I had to deal with that screeching noise those alarms put out until the batteries are replaced.  However, over the next few days, the alarm continued to screech.  Turns out that it was time to replace the entire unit.  It wasn’t good enough to keep putting new batteries in it … a completely new model had to be put into place.
 
When Komen began, the model of public awareness and education was vastly needed.  However, 30 years later, it’s time to replace that model.  It’s no longer acceptable to say, “Early detection saves lives” because if that were true, all early stage diagnoses would result in a 100% cure with no risk of recurrence.  There are too many early stage patients having metastatic recurrences two and three decades after their primary diagnosis.   More research must be given into the biology of tumors to understand how to stop metastasis long before it occurs.
 
Research takes money.  Komen, please open your corporate wallets and designate more money into the area where differences can truly be made.  No more running and racing for a cure.  Let’s have research for a cure.