The rainbow connection

I’m taking a day off from being a breast cancer survivor.

 

No, really, it’s true.  I am using my soapbox for another crucial cause.  It’s all about this.

 

Cancer.

 

OK I was half-lying.  I am talking about cancer in general.  Believe me, I would really like to stop talking about cancer.  But it’s insidious, and it is everywhere.  Yesterday was a celebration of Aretha Franklin, who recently died of pancreatic cancer.  And this morning, I watched in tears as John McCain was mourned after his final stand with brain cancer.  I’m so tired of these stories.  But it is a good reminder that ALL cancers matter, and we need more, more, more research into what makes cancer cells tick, and how we can effectively eradicate them.

 

This brings me to my main point for today, which is this.  September is Ovarian Cancer Awareness month.  Unfortunately, Teal September does not get the attention that Pink October does, which is heart-breaking.  Because this disease should be called the “ninja cancer”.  There are no effective screening measures.  The symptoms are all common complaints that could point to a whole host of ailments.  And by the time that it is diagnosed, the disease is often advanced and requires aggressive treatment.

 

The American Cancer Society estimates the following for 2018:

 

  • About 22,240 women will receive a new diagnosis of ovarian cancer.
  • About 14,070 women will die from ovarian cancer.

 

Ovarian cancer ranks fifth in cancer deaths among women, accounting for more deaths than any other cancer of the female reproductive system. A woman’s risk of getting ovarian cancer during her lifetime is about 1 in 78. Her lifetime chance of dying from ovarian cancer is about 1 in 108. (These statistics don’t count low malignant potential ovarian tumors.)  Source: Cancer.org

 

Most women know to look for with breast cancer – a lump is a lump is a lump, right?  But do you have any idea what the signs of ovarian cancer are?  Well, you have come to the right place, because I’m going to tell you!  Here is a handy chart to guide you:

 

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Source: Dana Farber

 

I have a teal warrior in my family.  You likely do too.  Be aware of your familial risk, and do not discount symptoms.  And donate heavily to organizations that focus on research, not just awareness.  I just made you aware, so that job is done.

 

It is time for action, for ALL types of cancer.  Cancer does not discriminate, and neither should we.  It’s time to break out the rainbow ribbons.   Fight for cures for ALL cancers.  Set those damn ribbons on fire.  Do whatever it takes to identify cures and more effective treatments.  The time is NOW.  I don’t like funerals.  I want everyone to die of very old age in their sleep after long, fulfilling lives.  We all deserve that chance.

 

Don’t you think?

 

We will now return to our regularly scheduled breast cancer complaints.  Sorry, it’s my reality now.

 

For more information on coping with cancer, see our website www.driventosurvive.org

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Tell it like it is

This is the next installment in my series of pet peeves about breast cancer…

 

 

We have things that people say that grind our gears.  I have heard it all.

 

I’m a warrior.

 

I’ll beat this.

 

Chemo isn’t that bad.

 

I just have to push through it.

 

There isn’t much lingering pain.

 

And my favorite, “I’m fine.”

 

In the past three years I have watched thousands of women journey from diagnosis through treatment, and into the aftermath.  It is a journey full of ups and downs, pain and elation, and grief and acceptance.  It is like being on a roller-coaster, and just as the train is pulling back into the station to end the ride, the machinery speeds back up and rockets you back for another whirl.  Over and over again.

 

I see a pretty similar pattern.  The bewilderment of diagnosis.  The overwhelming period of treatment decisions.  The determination that comes with the commencement of surgery, chemo, and radiation.  And the hope that comes as treatment is completed.  It has the essence of the plot of a fiction novel.  And it is about as true.

 

Once we overcome the initial shock, the only means to cope is to go into Super Woman mode.  We are warriors who will kick the crap out of cancer.   We can do it all – work, families, home, cancer treatment.  But it’s fine, we will get through it all, we will be cured, and life will be normal.   We minimize our pain and mental anguish to our friends and family because we want to be seen as strong, and we don’t want to ask for help.  Or even admit that we are flailing.  Badly.

 

So we tell everyone that we are ok.  Maybe a little tired.  But we got this.

 

And this is the biggest disservice that we can do for all of our pink sisters, past and present.  Because the average person has no idea what having cancer is like.  So they expect that we can handle it like a champ.  This is why we get comments like, “My mother’s best friend’s sister’s landlord’s former hairdresser didn’t have to leave work, or lose her hair, or get sick from chemo, or have chronic anxiety, or have long-term side effects.”

 

Umm… yes, she did.  I guarantee it.

 

But she is telling everyone that everything is ok and having her mental breakdowns in private.  And so the next woman comes along and thinks that she too must buy into the warrior mentality and not admit the truth about the pain.

 

I remember watching a woman in my support group from the time she was diagnosed.  She was confident and strong.  She brushed off the initial pain and suffering.  Even as she started admitting to the group that she was beginning to struggle, she was still posting only positive updates on her own personal page.  And yet, she has been deeply affected.  She has numerous long term side effects, and hurts for the way her life has changed.   But I doubt that most of her acquaintances understand that because she still falls back on, “I’m fine.”  And so the fiction perpetuates.

 

We need to be honest with everyone.  Yes, my body hurts constantly.   Yes, my brain feels like scrambled eggs most days.  Yes, I have insomnia that is downright painful.   Yes, I have anxiety that is paralyzing almost daily.  I don’t say these things to complain, I do it to promote understanding of why I may not seem cheery somedays.  Or why I may be snappy.  Why I am too tired to go anywhere.  Or at times even talk.  I also try to educate so that if someone else in your life is diagnosed, you will know to look beyond the superficial “I’m ok” or ” I’m fine”.  Don’t ask how she is, ask how you can help her to feel better.  She may not need anything, but for many of us, it is liberating to just know that someone acknowledges our pain, even years later.

 

Let’s not make breast cancer worse than it already is.  Let’s work together so we can all find our own measure of peace.

 

See http://www.driventosurvive.org for ideas, resources, and support while on your breast cancer journey.

 

 

 

 

In the end

I have the angry music playing today.  The heart-pounding, I would like to scream, but I’m at work so I can’t kind of music.  The kind that dries my angry tears and lets me get back to business.

 

Specifically, I have an earworm from Linkin Park.

 

“In the end, nothing really matters.”

 

I have been fighting an uphill battle lately with anxiety and panic attacks.  Just when I think I have a handle on it, BAM, it smacks me again out of nowhere.  I can’t identify my triggers, none of my coping mechanisms work consistently, and it wears me out.

 

But today, this is different.  This is real.  A dear sister from my support group entered hospice.  Someone I have talked to, laughed with, cried with, and shared our stories.  And now she is at the end.  And I want to cry and scream at the unfairness, the wastefulness of it all.

 

I weep for her and what she is facing.  I’m trying to imagine what is in her head and I know that I probably can only conjure half of it.  Who can really know what they will feel at this moment?

 

I hurt for her family.  I know the pain they suffer because I have been there myself.  The hurt and sadness never really go away.  The path to emotional healing is long.

 

I worry for so many of my other sisters.  Some are early stage, some are stage 4.  But we all know it can be one of us.  If it can take Kelly, with her optimism and fighting spirit, it can come back for any of us.  That is the reality that we try to forget until something like this pops up to remind us.

 

I fear for myself.  That is selfish, I know.  But what happens to me?  I sit here every day, with the cold, dark fingers of anxiety tightening in my chest until I can’t breathe.  How can I ever go back to a sane life?  If it is all going to end way to soon?

 

But then I realize – life is life, no matter how crazy or sane.  It does matter.  Kelly siphoned out all the life she could, even after being diagnosed as terminal.  She never thought of herself that way.  That’s why we will remember her as a force to be reckoned with.  There is no shame in the end of her journey, only an acceptance that our bodies can only endure so much.

 

So I will do the things in life that make me whole.  And I will think of Kelly when I visit my happy place, Disney, which was also her happy place.  I will continue to befriend the courageous women fighting this damned disease.  We will share our stories, and we will be heard.  We will be remembered.

 

In the end, we will MAKE it all matter.

 

For more info on navigating breast cancer, see our website, http://www.driventosurvive.org.