Phrases to Rethink: “Someone’s Always Got It Worse Than You”

I can’t put all the blame for this phrase on the “uninitiated.” I’m guilty of this one myself. I get it; it’s meant as cold comfort when you’re feeling abysmal and you’re trying to shake yourself free of hopeless thoughts.

Preface the phrase with “… but then I saw someone with [XYZ condition] and I thought…” Maybe it’s a wheelchair, maybe it’s a chemo-bald head. But either way, the statement says “Man, at least I’m not living THAT sucky life.”

(Let’s first acknowledge that the phrase is dehumanizing in that it implies that the “worse” life is forfeit, and the person living it is somehow incapable of worthwhile contribution. Moving on now.)

So what about the person who’s got it “worse” than you, anyway?

You wouldn’t elect to endure the illness, the medical debt, the depression, the PTSD. And I can assure you that he or she didn’t, either. Too bad about the part you’re missing out on, though.

What?

The unfortunate thing about never having known devastating misfortune is that you don’t get to see the near-seismic swell of effort to crush that misfortune with fellowship, community and love. No, it doesn’t come from everyone. But to see people give of themselves, their time and resources, in their best effort to strike back on your behalf, simply drops your jaw. It astounds past the parameters of simple gratitude. And it inspires hope in something far more vast than your own future.

Being the one who’s got it “worse” also saves you from a life of petty, trivial concerns. You are freed of thoughts about your hair highlights being uneven, your aesthetician running late, the anniversary dinner restaurant not quite being nice enough, “enduring” the gift of old age, whether your lifestyle matches or outpaces that of your neighbors’. You won’t even remember you worried about any of it. You can kiss your first-world anxieties goodbye.

The list of things that rattle you gets shorter and shorter. Job blew up? Relationship going south? So what? You can always start again. You get a better sense of what is actually fixable, especially after having had to find creative ways to live through horrible stuff.

Are you sure you’ve got it “better”? Because you could learn so much from the person who’s got it “worse.” In honesty, you can learn from everyone, because everyone has dealt with something you haven’t.

I am tired of shame.

 

“Don’t tell.”

“I wouldn’t mention that right away.”

“I have to be careful what I say.”

“You can wear false lashes, right?”

I know someone who was abused by a friend of the family when she was 5.  I know someone who was in an abusive marriage for 4 years.  I know someone who is living with a disability.  I know someone who is trying to help a family member.  And by now, anyone who knows me knows my understanding of cancer.

So here’s my question: When something awful happens in your life, why do “people” collectively react as though you signed up for it?

Why are we held responsible for the things we never asked for, actively tried to avoid, would gladly have refused, but are now forced to manage?

It’s not even a conscious response.  If it were, then people would be forced to face how unethical that response is.  This is the point at which health-based magazines would leap in with evolutionary explanations — “humans are hardwired to avoid blah blah”– reducing the perception of people to highly-articulate animals (and thereby hurling a subtle insult at animals).

I had put “people” in quotation marks earlier.  That’s because some individuals use their own reason to avoid the group-think.  It’s not accurate to call them “brave,” because what they do sets (rather than exceeds) a new standard of compassion.  And you know, “compassion” isn’t accurate either.  “Compassion” connotes a brief and optional moment of heightened sensitivity.  These folks aren’t like that.

These people have wisdom.  They accept the simple fact that anyone can — more to the point, everyone will — run into an extreme hardship they never wanted.  And if everyone will, then we’re all in the same boat.  Being all in the same boat, we want to help when others are suffering because we know what suffering is and how indescribably awful it feels.  And so, these people stick their hands directly into the troubling circumstances and do what they can to make it right.

We’re all capable of this.  There aren’t really “2 kinds of people.”

Being ashamed of having fought cancer is like being ashamed that the house down the street is red — it is a fact, not a choice, and warrants no judgment or assessment from anyone.  A person is made up of many more facts than the ones that represented challenges.  More “people” need to develop the good sense to look at the full list, and the wisdom to see it’s not so different from theirs.

D1061642

The nurse lifted her wrist gently and turned the bracelet, trying not to wake her.

“I have Heather Lynn Bowler, 8/3/77, D1061642…”

The nurses acted in teams to prevent errors, and functioned with the seamless teamwork of a Star Trek bridge crew.  Even half asleep, the names of her chemos and their infusion times were easy to remember.  The dosing measurements, not so much.  But it was all pre-determined anyway, so she could drift off again.  Eighteen of these over six months.  She doesn’t remember every infusion, but she knows she cried to a sympathetic nurse during the first one and hugged a cheering nurse after the last one.

D1061642 unpacked her chemo-day bag.  The crystallized ginger.  The hand lotion.  The notebook that contained everything from appointment times to prayer cards to transcripts of contradictory information from the insurance company.  The blue bandanna that was there for spontaneous tears or an unrelated runny nose.  The fabric markers, to sign the back of the quilt donated to the treatment center by local crafters and gifted to her.  She never asked anyone to sign it — she knew the pressure that would put on friends.  Even the bag itself was put away.

D1061642 looked around the studio.  The beads and found objects on the table.  The T shirts and jeans, all mixed by seasons and various levels of wear, that made the studio double as a dressing room.  The old art portfolio with her maiden name.  The collections of books and magazines and visual anything, dating back years, decades.  An amateur archivist whose collected histories had all the impact of a tree falling in the woods.  All objects that, in recent years, she would only glance at before doing something that seemed more important.  All objects that delineated her baby steps toward making her mark on the world, before disease started making marks on her.  She sorted the clothes: half to wash, half to store in the bedroom dresser.  At least that was done.

D1061642 wanted to clean EVERYTHING.  The chemo fog made her oblivious to the dust for so long; for a moment she almost missed it.  She washed the rugs, which necessitated the sweeping of the floors.  She washed the bedding, which meant tidying the top of the dresser, which exposed dust.  Brooms, dustcloths, detergent, and music to counter the silence.  These were the hours when she used to work. More than twice the hours that she is scheduled for now.  The good thing about cleaning a dirty home is that you can see the difference.  You have proof that it worked.

D1061642 remembers the last vacation they took before the two diagnoses.  A week-long road trip for their anniversary. Rained out of beach plans, they visited friends and family and the bucket-list museum she had been waiting years to explore.  But she never expected to remember the moments of downtime.  They weren’t shattered by what-ifs and invasive fears.  She hadn’t yet started to wonder how far out into the future she could plan.  She walked with her shoulders broad, not hunched, and as though gravity was cutting her a little slack.  She felt beautiful and self-determined, slim and strong and a little zany.  And always completely safe.

D1061642 is not done.  Surgery.  Radiation.  The attendant health issues they can cause.  Yes, more bracelet scans.  Worry is pointless.  This is the path.  Each day will still be 24 hours long, and move at the same rate it always moves.  No matter how wonderful or terrible, the day still bows out at midnight, and another one comes in.  That much will not change.

An Open Letter to the American Cancer Society

October 28, 2015

An Open Letter to the American Cancer Society

I am writing in response to the CNN article regarding the new breast cancer screening and prevention guidelines set by your organization. (URL: http://www.cnn.com/2015/10/20/health/new-acs-breast-cancer-screening-guidelines/) The guidelines, specifically the ones that raise the recommended screening mammogram age to 45 and discourage routine manual breast checks by doctors, have generated thorough discussion within the breast cancer survivor community, as well as reactions of disappointment, alarm and outrage. Expect letters, emails, and other forms of correspondence from my fellow survivors that express our concerns. They will likely touch on points of many women having been diagnosed well below the age of 40 let alone 45, and these diagnoses being a result of diligent palpation-type exams, and the new guidelines following a dangerous protocol of “ignore it and will go away,” thereby giving into breast cancer fears rather than facts, and creating a false sense of security among women who are too terrified to accept the possibility of being diagnosed and seeking treatment.

But personally, I am writing on behalf of women diagnosed with Triple-Negative breast cancer.

Triple-Negative breast cancer accounts for 1 in 5 breast cancer diagnoses, and is unique in a few ways:

• It is classified as aggressive, in that it grows quickly and can recur quickly.
• Recurrence is not confined to the breast; it can metastasize to the lungs, liver and/or brain.
• There are fewer treatment options because it does not respond to hormone-based therapies.
• It primarily strikes women who are pre-menopausal, in generally good overall health.

Younger women with Triple-Negative breast cancer tumors are not apt to find them via screening mammograms, because insurers will not approve a screening mammogram for a woman below a certain age – an age which you have recommended raising. These women are only apt to find the tumors through routine palpation-type exams – a practice which you now discourage.

What are you thinking?

Attributed to George Carlin is the quote “Inside every cynical person, there is a disappointed idealist.” In my attempt to answer the question above, I’ve come to only one very sad and cynical conclusion: By ignoring women under 45 who have Triple-Negative breast cancer tumors (ignoring from a diagnosis standpoint), the number of total reported breast cancer diagnoses is artificially lowered. Twenty percent of breast cancer patients will never get diagnosed because their cases are never recorded, bringing the new “1 in 8” probability a little closer to the old “1 in 9.”

The related, horrifying and unacceptable fact is that twenty percent of women with breast cancer will die due to lack of diagnosis and discouragement of doctors’ routine breast checks. Triple-Negative breast cancer, left untreated, kills. And it kills quickly. Under these guidelines, I would be dead by now. Twice, were that possible.

Unacceptable. Irresponsible. Stop encouraging the death of women through medical neglect. It’s an enormous step backward in women’s healthcare, and the last thing anyone would expect of the American Cancer Society.

My recommendation to you is to revise your new guidelines and release that revised list as promptly as possible. If it helps the process, talk to people who deal with this every day – patients and the doctors who treat them. Fellow survivors and I would love to see you return to being “the Official Sponsor of Birthdays.”

Regards,

Heather Bowler

Age 38

Triple-Negative Breast Cancer Survivor

How to Help a Friend Through Cancer Treatment? Be a Friend.

Bracelets by Renea Redmond Wunderlin. Thanks Renea!

It’s October again.  In every store or restaurant, you’ll see some shopping opportunity to donate to breast cancer research or awareness.  And all that pink is a touching show of solidarity, but how much does it really help?  Survivors and the ones who love them are thankful for the fundraising and research, without a doubt.  But there are tangible, person-to-person, right-now ways to help a survivor who’s going through the physical and emotional rigors of treatment.

Following are some ideas, inspired by friends and family who have helped me through treatment both times that I have had cancer.  And following these ideas, I’ll cover some facts about the financial impact of treatment, and a way to help with fundraising.

First and foremost: Be in her corner.  Your friend is still your friend, she’s just moving through some very frightening things and she will need your support.  Maybe you’re not emotionally prepared to help her deal with something so serious, and you need to just hang back for a while.  But if you’re reading this, chances are you’re ready to help.

Keep her spirits high whenever possible.  Even when she’s in pain, there’ll still be something funny to watch or beautiful to see or relaxing to listen to.  For me, not long ago, it was an afternoon of getting out colored pencils and coloring line-art pages with my friends while we listened to music and caught up.

Offer to help her understand insurance forms or other such paperwork.  It is possible to be too fatigued to think clearly; I’ve been there.

Go to a doctor’s appointment with her.  A second set of ears is a huge help when she’s processing so much information already.

She might need a smoothie.

Ask her, “Can I take you to the grocery store?”  Even if she can manage once she’s there, it’s going to be a challenge to get the bags from the car to the kitchen and get everything put away.

Send her a smile.  This doesn’t need to cost a dime — send her something sweet or funny via text, or Facebook or Pinterest–  whichever social media sites you have in common.  If you’d like to send her something tangible, greeting cards are great too.  Trust me, they’re such nice counterpoints to the medical bills she’ll be getting.

Prep some meals for her.  She needs to eat well but is too wiped out to cook.  Think veggies and protein, and maybe some comfort food.  She will have the most flexibility with meals that can stay frozen until she’s ready to thaw them and bake them.

Gift cards are a great help.  These can be practical (very helpful for runs to Target or CVS), or for a special treat (Sephora?), as she will need a pick-me-up but will be on a tighter budget.

Spring for a cleaning service.  (Disclaimer: The organization Cleaning for a Reason will clean a woman’s house once free of charge while she is in treatment, but in my experience, they see so many requests that they ask some patients to reapply for their services after a month or so.)  It’s one more thing off her mind, so she can focus on getting the rest her body needs.

Now, about the costs of treatment: It’s a fact that cancer treatment will have a significant and lasting financial impact on her household.  She is shouldering medical bills, co-pays, lost wages due to lost work hours, prosthetic costs (like wigs and breast forms), travel expenses (driving to weekly chemo and/or daily radiation, not to mention longer-distance travel for a clinical trial), and incidentals (cleaning supplies to keep things disinfected while her immunity is down).  All of this adds up and can be overwhelming.

Also a fact is that the financial assistance organizations available to her are overwhelmed as well.  And many of them require more financial documentation than is typically gathered even at tax time — after which she might still be denied a grant.  One rep from one of these funding organizations suggested I open a GoFundMe account so that long-distance and online friends could help me cover my medical expenses.  (This is an account best opened by the patient herself or by someone she trusts, as it involves knowledge of her bank account information.)  Even if you’re unable to donate, just spreading the word and copying the link to her funding site will help let others know so that they can help.  For better or worse, the most effective funding options for her are going to be grassroots efforts from people who know her directly or through a friend.  And every little bit will count.

Above all, help from the heart.  We all need support sometimes, cancer or no cancer.

Basic Eye Makeup During Chemo

Here it is, the fluffy post!  Though not really: being able to influence how you look is part of self-determination, whether in treatment or not.  It’s not vain so much as life-affirming.  But before I leap on my gender soapbox, back to my tips!

Apologies for the slight graininess of the photo.

My eyes were pretty much lashless in this photo, and my brows were sparse at best.  But this being my second time in treatment, I like to think I’ve got my makeup game down.  Following is what I do for my (current) standard day look, along with links to what I use and other tips along the way.

First suggestion: Go to a Look Good Feel Better session.  You’ll get tips on the safe application of makeup, along with head wrap techniques and some fun with wigs.  It’s like a night in with the girls, complete with gab session and makeup application.  And you receive a BIG bag of NICE makeup to keep.  It’s one of the rare perks to this whole cancer thing.  LGFB is where I learned to mix a 50/50 alcohol/water solution in a spray bottle and use it to disinfect my makeup brushes and pencil tips.

(NOTE: For my product suggestions below, I’ve linked you to Sephora’s website whenever possible.  This is because Sephora is excellent about listing what products are made *without* — ingredients, like parabens, that many patients/survivors are trying to avoid using on their skin.)

OK. Find a spot with enough light, where you can sit down and be comfortable.  Put some music on.  It’s no fun if you’re rushing through; might as well enjoy the time and treat it like a little art session.

EYES:  If I feel like I’ve got a little oil residue on my lids from last night’s makeup remover, I’ll dust some powder over my lids before starting with the liner.  In this photo, I’ve actually got 2 shades of liner on.  When I had lashes, I used to wear dark brown liner and black mascara — I liked the depth it provided.  To simulate that, I’ve lined the whole lid with the brown and gone over the outer 1/3 of the line with black.  I like to wing it up just a little at the outer corners, to simulate the shadow cast by the lashes that used to be there.  Now, if you just line traditionally, the inner rim of your top lid is going to show because that’s where your lashes used to be.  For the look I’ve got above, line the inner rims as you have the main line itself.  You won’t poke yourself in the eye; just take your time. 🙂  This sounds intimidating, but with a soft, waterproof formula, it won’t hurt (see my picks below).  Also helps to do these lines last, as your pencil tips will be dulled at this point.  I don’t usually do anything to the bottom lash line, because I’m over-cautious about not drawing attention to my dark circles (more on them later).  But if you do: use a very light hand, just line the outer 1/3, and smudge gently.  Remember, naturally you would have fewer lashes down here anyway.

What I Use: The brown is Urban Decay 24/7 Glide On Eye Pencil in Whiskey.  The black is Urban Decay 24/7 Velvet Glide On Eye Pencil in Black Velvet.  Since the black I chose is matte (deep, rich, true matte), it flakes a little.  If that might bug you, go for the standard 24/7 pencil, as linked above, in Perversion.

BROWS:  I won’t lie, this takes practice, and you’ll get better with time.  If you can, start filling in your brows before they become sparse, even if it’s just a light amount that you’re filling in.  It’s the best way to get a feel for the shape and proportion of your brows.  If you’re past that point, then you get to reinvent your brows. 🙂  Check Pinterest for brow shapes and styles you like, and give one a try.  I tend to think of brows as branches rather than lines: they have their own width, their own taper, and their own bend at a specific spot.  For me, the bend starts just before the outer corner of the eye.  I like to use a pencil, for the control it gives and for its drier texture (I’m oily in the T zone area, in spite of the drying effects of chemo).  My technique: Start with a few feathery strokes straight up at the inside end of where you’re drawing your brow.  Using small strokes, draw a very light guideline along the bottom of your brow; stop where the brow will bend/arch.  Draw more light feathery strokes up from that guideline, but at an angle.  At the bend in the brow, draw your strokes at a downward angle instead, tapering the width of the brow.  Use a cotton swab to fine-tune the shape and clean up edges as needed (this is why I like to use something that’s not waterproof).

What I Use: ZuZu Luxe Cream Brow Pencil in Russet (my wig is ginger red; this pencil is dark blonde/medium brown).  If you prefer a gel and your skin is on the dry side, e.l.f. Studio Eyebrow Kit is not bad… and $3. 🙂  If you’ve got brow skills and are looking for something waterproof, there’s no beating Too Faced Bulletproof Brows.  It’s worth the cost.

UNDEREYES:  I had pretty bad dark circles even before chemo, and they haven’t gotten better!  I make sure the area is moisturized — I’m using a separate eye cream these days.  Give the cream 30 minutes or so to penetrate, if you can.  I use my ring finger to swipe across the top of a concealer stick, picking up some color but not a whole lot.  Then I **don’t** start in the inner corner like everyone says — then you’ve got all your product in the tiniest area that needs coverage.  Instead I pat it on the middle of the undereye circle, just below the iris of the eye, and pat the color out in each direction, more toward that inner corner than the outer corner.  This might not be enough — it’s OK to go over this with a second light layer of concealer; in fact it’ll look better than one thick layer.  Use a little concealer brush for those inner corners this time, and if you have a little shadow on the sides of your nose, then use the brush to pat concealer there too.

What I use: Josie Maran Argan Creamy Concealer Crayon.  Wonderful, hands down, in terms of coverage, blendability and moisturizing content.  Just twist it up when the point wears low; you don’t have to sharpen it.  I set all that undereye work with a dusting of powder, but not yet.

BLUSH:  I’ve found nothing that looks as natural or flattering as a cream formula blush.  And the cheeks can usually benefit from that extra boost of moisture.  Swipe your middle and ring fingers lightly over the blush.  Smile into the mirror — generally a good thing to do during treatment anyway — and pat and blend into the raised area of your cheeks.

What I use: I’m not thrilled with this one, but the price point is good.  I’d like to treat myself to a more luxe brand once treatment is over.  Sonia Kashuk Creme Blush

POWDER: *Now* I set what needs setting.  Many powders available these days are mineral powders, and they have more coverage than a standard loose or pressed powder.  I’m not wild about much coverage, but if you are, I’d go for that option over a liquid foundation.  It’s just more versatile.  With an eyeshadow brush that I use just for this part (any small fluffy brush is fine), I swipe across a pressed powder (you can also shake a little loose powder into the powder jar’s cap and dip the brush in) and gently brush over the areas where I’ve applied concealer.  If I’m not wearing eyeshadow, I’ll go over my lids too, just down to the liner.  I’ll also go around my brows.  With a bigger powder brush that was actually made for this job, I’ll swipe over the powder again and brush over my T zone, and then very lightly over the rest of my face and about halfway down my neck (so there’s not a big difference in finish between my face and my neck).

What I use: e.l.f. Studio Translucent Mattifying Powder.  Linking you to Target’s site for this one because it costs less here.  It’s cheap and effective — normally those things are mutually exclusive, but not in this case.

Wait, what about eyeshadow?  For me, eyeshadow is as much of a wild card as lipstick.  I like to leave it till last because that gives me time to decide which color I want to use.  My go-to is a shimmery champagne shade.  (I would link you, but I’ve had it for so long I’m not sure I can find it again.  Which is embarrassing from a germ-conscious standpoint, but in my defense, it’s a rollerball that I apply to my hand before picking up the color with a brush to apply to my lids.  So I’m not dipping into an old pan of shadow.  But yeah, I should ditch it… anyway…)  Why?  Because something light, with a little shimmer, will lift attention to the top lid — and away from even the slightest suggestion of a dark circle.

What I use: Apart from the rollerball shadow I need to toss, I like to experiment with mineral-makeup makers I’ve found on Etsy.  Check through their policies and ask questions; they’re often happy to answer because they take pride in what they make.  And the prices are fantastic!  My two favorites are Eskimo Kissez and Tater Rounds Beauty.  When budget allows, I also go for Urban Decay.  The quality has always been consistently great.

There’s the whole shebang.  If I can answer any questions about products or technique, please feel free to ask in the Comments.  As detailed as this is, I’ve probably missed something.  Comment if you have tips you’d like to share, too!

Belief, Reason, Motivation

“Faery Wisdom for Monday from the faeries: Don’t ever believe there is anything you can’t do, because belief gives you reason. Reason gives you motivation, and motivation is what gets it done.” ~ Julieann

I met Julieann through a mutual Facebook friend. We were discussing wigs, and found that there were plenty more threads of interest that we share. I’m thankful to be within a great, varied circle of friends who appreciate art and beauty and the power of determining your own perspective. But Julieann’s inspirational quote above holds particular resonance with me now.

I’m not treading new terrain. People get cancer. Some, like me, get it twice. But not everyone gets triple-negative breast cancer, twice, in removable locations. That’s not how triple-negative usually behaves. And recurrence in the Rotters lymph node only accounts for 0.5% of all breast cancer recurrences. This is when I quip wryly about being a “special snowflake.”

It’s scary, though, at risk of understatement. I hop online (danger, Will Robinson – and if you try it, be very careful) to look for examples of others in this same situation. I can’t find any.

So, I guess I kind of have to create precedent here. No pressure.

Now’s a good time to mention my gratitude for the doctors who take care to remind me that each case is completely different, just as each individual is. If cancer were easy, if it were understandable, if it were predictable and played by the rules, there’d be a pill for it by now. I’d be able to go to Target and put the box of pills in my basket along with a water filter, some granola bars and a pair of socks.

And now’s when I remind myself that the uncommon is not uncommon to me. “Different” was not a dirty word in my house when I was growing up, no matter how it was classified in other social spheres. I wasn’t going to be the art major who painted; I was going to take the use-whatever-is-at-hand mixed-media approach. Some members of my family eschew uncommon and shoot directly for impossible. There was my paratrooper granddad with the fear of heights. There’s my stepdad who, before retirement, maintained such an in-demand work schedule that he slept in spare hours when and where it was convenient. There’s my stepsister who devotes her efforts to everyone in the family who needs care, while also managing her fibromyalgia. And Mom has survived… well, that’s a long list, but she’s survived things her doctors didn’t think she would survive. You’ve seen the folk-art signs on social media that say “We do loud” or “We do geek” – remind me to get started on one that says “We do impossible.”

There’ll be another woman at my treatment center who asks “How uncommon is this? What are my chances?”

And her doctor will say “We do have record of a patient…”

(Thanks also to Mandi, who talked with me not long after diagnosis and raised the precedent idea.)

The Third Viewpoint: Care, with respect and without shame

I am female, best classified as a left-leaning independent, and I do not stand with Planned Parenthood. The short explanation is that women deserve better.

Here’s the longer explanation:

In 2000, after considerable searching, I started a new job in my dream field. It would be 3 months before I could join the firm’s health insurance. To have access to birth control in the meantime (a drug that also helped control my anemia by ensuring only one period per month), I went to Planned Parenthood for regular pelvic exams. The Planned Parenthood I went to at that time required appointments to be made at least 2 weeks in advance. Before I started the new job, and while I was still at my old job, I remember one occasion when I needed an appointment sooner than that. The receptionist worked with me to secure me an appointment only one week in advance.

I worked hard to prove myself at my new job, and to accommodate when other people needed time off. And unfortunately, that meant I was met with another time crunch when it came time for my next appointment. I explained the situation to the receptionist and apologized for the circumstances. I was so glad that she was able to work me in.

When I arrived, prior to my appointment, a staff member sat down to speak with me in the waiting area. She noted the previous appointment I made with only 7 days notice, and the appointment I made more recently with only 7 days notice. I reiterated my gratitude for them working with me.

And then she said, “We believe this is becoming a habit.”

A habit?

“We believe” – as in, you sat down and discussed your client/patient and reached a consensus?

On a side note, I can’t help but find it ironic that I was scolded inside a Planned Parenthood.

I was very upset – how exactly do you respond to that? – and I was in my early 20s and still too timid to argue on my own behalf. I told her tersely that I didn’t see it that way, but apparently that didn’t make a difference, and I walked out.

I confided these facts to my employer, who agreed that the treatment I received was inexcusably poor, and encouraged me to begin looking for a primary care physician for when my insurance coverage began.

In reflection – from age 38, not who I was in my 20s – I can’t help but wonder how many other women Planned Parenthood has treated as second-class based on the knowledge (assumption?) that these women have nowhere else to go, and the apparent stereotypes they espouse about the type of women who seek their services. And I see less of an argument in favor of going to a separate women’s clinic in a time when our nation is working to improve healthcare access for everyone, male and female.

That’s not to say the Affordable Care Act is perfect as is. Case in point, again from my own experience: When I called a radiology billing office last month about a mammogram bill, I couldn’t understand why my insurance was not covering a yearly mammogram. I realize I’m a special case who needs 2 mammograms per year, but it was my understanding that a yearly mammogram falls under the same basic care standard as my allotted yearly visit to the gynecologist. The conversation was interesting and informative: the receptionist told me that a mammogram qualifies as covered per the Affordable Care Act IF you have no personal history of disease. My guess is that a screening mammogram is covered, whereas a diagnostic one is not – and as a breast cancer survivor, I can expect mammograms of the diagnostic variety indefinitely, or until my oncology team says otherwise. Nonetheless, it’s a sad irony, and an indication that the Affordable Care Act is not without its version-1 bugs and glitches.

No, the Affordable Care Act is not an insurance plan. But its intent was to increase access to insurance and set ground rules for which types of treatments should be considered the basic standard of care.

We should view the ACA as a work-in-progress, and push for reforming basic care standards that will more effectively meet the healthcare needs of the half of the population that is female. Consider again the conversation I had with my employer when we agreed that I would get better quality care in the office of a primary care physician: that should be the goal, to have your health needs met regardless of your gender, with respect and without shame.  Planned Parenthood is not so much an answer as a stop-gap. And if we’re focusing on healthcare reform, then let’s reform healthcare and not resort to stop-gaps. Where reconstruction is necessary, a band-aid won’t help.

I don’t know how to enact radical change, but I know individual conversations keep points relevant in the national conversation. Individual conversations with the people you know best, and with caregivers, and with insurance companies (it’s worth the wait time to talk to a human being). As a rule of thumb, if it’s important, talk about it.

Positive Energy

Wanna laugh?

Today’s post was meant to be about having patience with the process of treatment and its side effects.  But when I first started writing that post last week, fatigue took hold and I had to lie down.  And today… not feeling much more patient.  So the patience post will need to wait for another day.

Honestly, there are frustrating days, when you feel good until you feel unplugged.  Or feverish.  Or like maybe one of your toenails has had it with treatment and is getting ready to go.  And you think, so much of this is out of my control, so what CAN I do?

First things first: If you find benevolence outside you, send up that prayer.  Once that’s done, or if you look within instead, proceed to step 2:

(Candle courtesy the helpful folks at Harmony Farms )

I’ve seen fellow survivor Bif Naked use the hashtag #PMA in her Facebook posts, and some days “positive mental attitude” will be the last thing you want to hear.  But your choice to recognize and nurture the positive is the part of treatment that only you can provide.  It’s the variable that no doctor or disease can account for, the immeasurable.  It is “X” in the equation.  You determine what it involves, who it involves.  It might not involve everyone or everything that you or others have expected.

I’ve been drawn to certain shaded of blue since my diagnosis, and I began to ask what this was telling me.  These shades are associated with the throat chakra, and that’s inspired me to consider how much of my stress is tied to me not speaking my mind.  It’s easy to hide behind timidity and call it diplomacy.  And easy to unconsciously develop a life around others’ demands while ignoring your own needs.  Making sure you are happy doesn’t mean you love anyone any less.  (Please remind me of that when I forget it 10 minutes from now!)

Gather the reading material, the tea, the loved ones (if available), the candle, the mat, the music.  Get by the window or out in the open air.  And find X.

July 22, 2015

Today is the day to start this blog.

It wasn’t last Spring, when I was finishing up treatment for triple-negative breast cancer. 4 rounds of Adriamycin/Cytoxan and 4 rounds of Taxol did a lot to me – including shrinking my tumor from 2 cm to less than a millimeter. That success made me a great candidate for lumpectomy – the lymph nodes they took then looked clear, too. I was proudly going to my 20 rounds of radiation, watching as my hair came back. I was declared “No Evidence of Disease” that summer, and my port was removed. Neuropathy faded, energy came back. And apart from dealing with the emotional weight of it – and I was happy to give myself time to deal – I was on top of the world.

And it wasn’t this Spring, when I was diagnosed with recurrence in a lymph node below my collarbone. Scans, scans, scans and more scans found that, thank God, it looks like it’s really just right there. Not lurking in an organ, as triple-negative frequently does when it comes back. Second opinions, three tumor boards. Everyone has seen my pathology, thank goodness for the thoroughness of my team.

Treatment this time will be 18 rounds of Taxol and Carboplatin – once a week x3, then a “break week” in between. Following planned is localized surgery (breast MRI shows them to still be disease-free), and goodbye to a lot of lymph nodes. Then more radiation, from a team whose precision and skill I’ve always trusted.

That’s a long time to be scared. It’s been too painful to even recount all this until now. But it looks like this is the time in my life to finally, finally fight the anxiety and worry that’s been my predilection for just about all my 38 years. When you have limited control (i.e. always, really), there’s such comfort to turning it over to whatever part of this universe in which you find benevolence. Where you find it is your call – it’s such a personal thing. I’m calling mine God. If you’ve ever loved someone, cared for someone, you’re proof that benevolence exists. Some part of this universe loves you too, wants to see you thrive and make your indelible mark on the world of which you’re a part. Make the leap to believe in that. No one can tell you you’re wrong.

That’s why today’s the day to start this blog. With my Joao Gilberto Pandora radio on, keeping up my fluids after treatment #8, having some nuts as I take my iron pill, and headed for more scans this week. Not today, cancer. You aren’t stealing jack from me today.