Tag Archives: Breast cancer awareness

Am I Really a Cancer Survivor?

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Call it Like it is: Maintaining the Will to Live

Musings from 21 Years of  Living with Metastatic Breast Cancer

After this blog post, I’m done answering this question: 

Are you a breast cancer survivor?  

Done.  Over.  Fini-to.

People living with metastatic cancer of any type can refer to themselves as anything they want.  Warrior?  Great.  Survivor?  Fabulous.  Thriver?  Whatever floats your boat. 

Yes, sarcasm flows in my veins but, really, I’m good with all of those descriptive terms.  Go for it — for your own purposes but not mine.

These labels help inspire people who face life-threatening diseases feel empowered, strong, hopeful.  Terrific.  I’m happy they use these terms to overcome the dark thoughts in their minds that their illnesses will likely eventually kill them. 

But not today.  Today we live.  Be positive. Be strong. “So stop being so morbid, Sandi, and just live.  Be happy.  Be grateful.”

Using labels like Survivor can matter when you discover your treatment has stopped working or the side effects of therapy are nearly impossible to endure.  “I need to get over this and go on.”

Maintaining the will to live – that’s what it’s really all about – is important for ourselves and for the sanity of our family and friends.  They don’t want us to give up and we don’t want to give up because of them.  Never.  Until we have to…and even then…we don’t want to stop trying to outlast cancer. 

I lost my will to live one day.

In early 2017, after two years of brutal chemo bouts with Ixempra followed by Halaven, I found myself spending more and more time in my recliner.  If I had to go to the bathroom, I’d wait until the last possible moment to muster up enough energy to walk 14 steps.

In between my frequent naps, I looked out the window.  I saw neighbors riding in cars, walking their dogs and gardening.   “I don’t have the energy to do ANY of that and my energy level is draining by the day.  I don’t see an end to this.”

Then we received a much-anticipated call from my son.  “The baby is here!  He was born a little while ago.”  My grandson.

And I wasn’t there.  I couldn’t be there.  Impossible.

My reaction?  I sobbed.  Ugly crying.  Unstoppable tears.

Why?

This couple went through fertility testing only to find they would not likely conceive without IVF.  During IVF, there were many ups and downs for my daughter-in-law.  So many uncertainties.  It was uncertain whether IVF would work, if the baby would survive through pregnancy, if the baby would be born with physical problems and even if the child would survive the birthing process. 

Lots of tension.  Lots of stress.

I was so relieved that my daughter in law was fine and the baby was fine.  What a blessing!

Then my thoughts went here:  “This baby will never get to know me.”

My daughter and husband were stunned by my tears, unaware of the thoughts in my head.  My daughter looked at me and said “Mom, you’re scaring me.”

I thought about what she said and what it meant.  She was afraid I was giving up.  That I would soon die because I might say “No more.”

I scared myself.  What happened to that urging inside of me that made it possible to wake up every day?  What happened to my determination to slog through my 14th line of treatment until it stopped working?

Where did my will to live go?

Packed up and gone.  I couldn’t locate it anywhere.  AWOL.

I thought how calm, peaceful and wonderful it would be to fall asleep and not wake up again.

Then I thought, “Am I really finished here?  Is this my last curtain call?”

It was at that point I called my insurance plan’s mental health helpline.

It took a few weeks to start sensing my urge to live again.  But it happened.  With therapy and medication.  Now I feel more like me.

But I don’t feel like a survivor.

My daughter in law is a survivor of IVF.  My grandson survived gestation and birth.  Both are survivors of their situations.

To me, a survivor is someone who has been able to successfully walk away from a life-threatening event and goes on with life.  Like the survivors of the Titanic.  They got in lifeboats and were eventually rescued.  Most went home.  Many returned to their old lives.  They didn’t get back on that ship except in their nightmares. 

I’m still on the Titanic.  I haven’t survived the event called “breast cancer.”  I may be currently living with breast cancer but I’m not someone who has survived.  I know my time is limited, even though I’ve beaten the odds of living past the magic five-year mark.

So, call me what you will if it makes you feel better to say it.

Tell me I’m alive because I have a positive attitude.

Tell me I’m alive because God isn’t through with me yet.

Tell me I must be doing something different to have lived this long with stage IV cancer.

But I know I’m alive because I still have the will to live.

Oh, and having a type of cancer that responds to current therapies helps a lot.  A whole lot.

#$@*-Off For Breast Cancer Awareness

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Flipping off breast cancer awareness month

Flipping off breast cancer awareness month

The much-hated (for me) Pinktober is now in full swing.  What is Pinktober?  It’s the 10th month when yogurt suppliers, kitchen appliance manufacturers, carmakers, Facebook pages and other media messages are tagged with “breast cancer awareness.”  They want you to buy stuff and do stuff for the cause.  They want to take your money, later donate some of it, and not tell you how they use the funds.  Some call this “Pink-Washing.”

This year, there is a “Go Braless for Breast Cancer Day.”  WTH?  What does going braless have to do with breast cancer and what are people really thinking?  Will men go all day with an open fly for prostate cancer awareness?  Will teens decide to cut themselves for leukemia awareness?  Maybe women with mastectomies and no reconstruction ought to go shirtless for the day.  Wouldn’t that raise some “awareness?”

http://www.facebook.com/events/101134023311845/

If someone wants to relate to those who have walked the path of breast cancer, there is a Go Bald Day on the 18th of this month.  You order and wear a skullcap to honor those who have experienced cancer.

http://beboldbebald.org/

Perhaps for breast cancer awareness, just put a big red X on a section of your breast that you might have lopped off should you end up with the disease (you can do this if you’re a man too), put a giant gauze pad over the top, secure the gauze with uncomfortable tape, and wear that under your shirt all day.  Then think about what it might feel like to have something growing inside you, but you don’t know what it is yet and you don’t know if or when it will kill you.  This could be “Be A Nervous Wreck for Breast Cancer” day.  It’s not about “Saving the Ta-Ta’s” – get real, people!

Do NFL players wear pink wristbands because we aren’t aware of breast cancer, and watching 350-pound linebackers in pink accessories cause people to want to look into issues surrounding the disease?  Thank goodness the NFL has an online shop to sell NFL branded breast cancer awareness items.  Too bad their message is “A Crucial Catch:  Annual Detection Saves Lives” when it’s not totally true.  Some of the videos on their pink site, although compelling, do not support the message and are about self-diagnosing the disease and not annual screening.  And the NFL isn’t even putting any cash into this campaign.  You, as a supporter, can bid on the pink items the players wear in the game.  Then your money can go to…um…something.  Lucky us!

http://www.nfl.com/pink

OK.  So I’m being a bit morose.  But seriously, what awareness are we raising this Pinktober?  What is the new news?  Other than writing some insipid remark on your Facebook page “in support of breast cancer awareness,” like answering the question “where do you like to place your purse when driving in the car?”  Now your cryptic posted answer needs to start with ‘I like it on the….’ And wow!  You’re supporting breast cancer awareness!

But I digress.  Again.

What are we raising awareness of?  That people get breast cancer?  That people are living with breast cancer?  We certainly don’t focus on the fact that people are dying of the disease.  Everything is pink and rosy in Pinktober.  Someone might have been sad for a few months, but now, look how happy they are!  They caught it “early.”  Aren’t they the sweetest things?  Don’t you just want to hug them?

Are we listening to those cute twenty-something women with doe-eyes on ads who think they need mammograms when there is no proof at all that mammograms do anything to save lives in women of that age group?  And for that matter, are we aware that mammograms have not been proven to reduce breast cancer death rates in populations under 55 or over 70?

Do we know that death rates have improved only marginally despite the millions and millions of dollars raised in the name of research?  And that we have made only a tiny bit of progress, finally discovering that breast cancers are not alike; that most of the time, breast cancer tumors are filled with different types of cancer profiles, not just one? And that most of the treatments used today are based on discoveries made over 30 years ago?

Do we know that we’re not looking for “a cure” for breast cancer but for several “cures”, because all breast cancers are not alike?  That a drug that kills cancer in one person makes absolutely no impact at all in another?  And that we might kill the bulk of the tumor through surgery, radiation or chemotherapy (the “Slash/Burn/Poison” triplets) but some cancer stem cells laugh at all that hoopla and sit dormant for months or years, and then decide for whatever reason, to start growing?

Are we aware that the 5-year mark of being “clean” after breast cancer treatment means little because breast cancer can easily return ten, twenty, thirty years later, even in the mildest cases?  Do we know that breast cancer is not curable, but it is treatable for many but not all?  Are we aware that someone dies of breast cancer just in the US every 14 minutes even on holidays?

Do we know that mammograms are not like getting a flu shot?  That this screening technique does nothing to prevent cancer; it just detects SOME cancers, while providing huge numbers of false positives causing unnecessary angst and needless biopsies?  Would we want a 40% false-positive rate in dental x-rays but declare it’s OK for breast cancer screening?  (“I’m sorry, Mrs. Spivey, but it looks like I didn’t need to do that root canal after all.  Oops”)

Do we know that we don’t even have a national goal for eradicating breast cancer?  (See http://www.breastcancerdeadline2020.org)  That scientists have only recently started to share their positive and negative research results to prevent repeating unsuccessful studies to eliminate wasted research time and money?  Are we aware that science has found several major links to know how breast cancer acts in the tiniest of cellular mechanisms, but they still don’t know what causes breast cancer to grow in the first place?

There is a lot of awareness that could be raised during Pinktober, but I haven’t seen much that means a whole lot.  It’s turned into a salacious time of the year focusing on “ta-ta’s,” “boobies,” and things that jiggle in the night.  It’s about selling the latest pink-washed wine or perfume or shin-guard.  It’s really not about raising awareness any more.  It’s about the selling of “pink” and exploiting all things feminine.

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