Cancer Lesson 10-9A:It Doesn’t Matter What Color the Ribbon Is

Cancer Lesson 10-9A

Originally posted on kymlucas.me October 13, 2012by kymlucas

Cancer Lesson 10-9A: A guest post by my friend Pat Rainey
You may notice the lesson number is out of sequence. That’s because 10/9 was the day Pat got her first all clear scan after surgery and chemo.

English: A teal ribbon, which is an awareness ribbon for Ovarian cancer (Photo Credit: Wikipedia).

It Doesn’t Matter What 
Color the Ribbon Is

It sure is pink a lot this month–almost everywhere, and that’s great!  It’s Breast Cancer Awareness Month and we should see pink wherever we turn.  But let’s not forget some of the rarer, lesser-seen cancers that we should also keep in mind.  Here’s a link to a chart of many of the different cancers and their support colors:  http://www.rose-colored-glasses.com/colors.html 

No matter what comes before it, breast, colon, prostate, liver, ovarian, CANCER is a scary word and the second question you ask yourself is “How did these rogue cells get into MY body?”  Sometimes you can figure out why; most of the time there is no answer to that question.  Suddenly you look around for your color of ribbon and you hope to see it everywhere so you know people are trying NOT to let it happen to the next unsuspecting person.  You buy a few new pieces for your wardrobe, or a new shade of nail polish to remind yourself (as if you could forget) of a new obligation on your part–to advocate, pay it forward, and protect the next person from having to go through what you’re facing.

The lavender ribbon is the support color for ALL cancer awareness, and maybe we should paint the world lavender.  Or maybe we should each educate ourself in our specific colors and do what we can to advocate for more research, more funding, better treatments.  Often, a drug or treatment that is useful for one type of cancer can be used to treat another kind, or modified to target a different cancer cell.  Progress IS being made every day, and whatever color ribbon we wear, any advancement is an accomplishment.

Kym’s note: As a good example of what Pat’s talking about, I was unable to find royalty-free clip-art of a lavender ribbon. I chose teal because last month was Ovarian Cancer Awareness Month, and I saw very little of the color anywhere.  I also chose to display it in Pat’s memory. She died early last year. 

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Cancer Lesson #20: Leave Your Modesty at the Door

Cancer Lesson #20: Leave your modesty at the door.

By the time I met my plastic surgeon (and, yes, it still feels weird to be able to use that phrase), I’d realized a lot (and I mean a lot) of people would be looking at (and probably touching) my boobs in the next year or so.

Thus, when Dr. K2 asked if he could take photos to document his work, I unhesitatingly took off my shirt, stood in front of a blue cloth and allowed my breasts to be photographed for posterity. (A little over a year later, we repeated the process for the “after” shots.)

And that was just the beginning. When I was in the hospital after my surgery, it sometimes felt like I was hosting a parade of interns, each of them interested in one thing – my newly reconstructed right breast.

I’m not exaggerating. My breast surgeon had at least two interns checking in on me, and my plastic surgeon had four or five, all making the daily rounds. Plus there were regular checks (hourly at first) by the nursing staff.

So, if you’re beginning breast cancer treatment and possess even a shred of modesty, I’d suggest you leave it at the door.

More recently, my oncologist has mentioned several times how a TRAM reconstruction tends to age more naturally (read: Your TRAM boob will sag just like your non-TRAM one). He mentioned seeing pictures at conferences that demonstrate this.

It crossed my mind that photos of my breasts have probably been displayed at plastic surgery conferences.

I find this kind of funny. Who would have thought I’d be a pinup girl after all these years? And after all my breasts have been through, they deserve a little extra attention, especially if it helps plastic surgeons do an equally good job on someone else in the future.

Lyndon Johnson shows his surgery scars. Photo from Briscoe Center for American History (if you can’t read the overlay!)

Cancer Lesson #10: It’s OK to Share Your Story on Social Media

Cancer Lesson #10: It’s okay to share your story on social media (if you want to). 

It’s a surprisingly effective means of sharing the news of your diagnosis and updates about treatment.

God knows, I never thought I’d break such horrible news to most of my friends via Facebook.

I mean, be serious. How freaking impersonal would that be?

Not very impersonal at all, as it turned out.

You see, I didn’t want anyone to think they were being underhanded if they shared my news. My getting cancer didn’t seem to warrant that kind of secrecy, and by broadcasting it on Facebook, I was sent the message that it was okay to tell people who might want to know.

So, after I told my family, my closest friends, and most of my co-workers, I put the news out there on good ole’ FB, and it worked out pretty darned well.

By the time I went into surgery, I think I was on every prayer chain in a two hundred mile radius. I know I had the support of everyone I knew.

Laugh if you will. I know my speedy recovery was due in part to those prayers, healing thoughts and good karma

Soon afterwards, I began blogging about the experience in what eventually became the cancer lessons you’re now reading.

But this type of public sharing isn’t for everyone, and that’s okay too. One thing I learned again and again is cancer is different for everyone.

 

Cancer Lesson #6: All Shall Be Well and All Shall Be Well. All Manner of Things Shall Be Well

Cancer Lesson #6: “All shall be well and all shall be well. All manner of things shall be well.” — Julian of Norwich

Also, John Lennon: “Everything will be okay in the end. If it’s not okay, it’s not the end.”

I believed it then and still do. One way or another.

Cancer Lesson #5: Everyone Reacts Differently

Cancer Lesson #5: Everyone reacts differently.

The doctor’s office called early on Friday, March 18 2011. She wanted to see me as soon as possible, early that morning if I could manage it.

Better to face bad news sooner rather than later, I thought, and agreed I’d come as soon as I got dressed. From the timing of the call and the urgency in the secretary’s voice, I knew my diagnosis was cancer. The only surprise was one of my lumps — sorry, masses — was nothing. The one I’d found was cancerous, and the third was an engaged lymph node (not good news).

I didn’t cry — not then and not much later — focusing instead on what would happen next.

It’s so weird to find out you have cancer, to learn that your body is harboring something that, if left unchecked, will kill you, especially when, like me, you have no symptoms. You feel as if you’ve slipped into an alternate reality, kind of like the suspension of disbelief you experience when watching a movie or reading a book.

I’ve thought about this a lot, and the analogy I keep coming back to is that of a train. You’re on this train, following the same track day after day, when click, you’re switched to a completely different route. All the other trains continue on the main line while you take a detour over some rough but scenic rails. Perhaps you’ll rejoin the fast track again, perhaps not. Nobody knows, but for now at least, this new track is your only way forward.

Everyone reacts differently, not only emotionally but physically too — this is a lesson I’ve learned again and again. The range of possible emotions is so wide — everything from anger to fear to outright disbelief. There is no one right way to feel.

I remember driving home thinking, “I should be crying. Why am I not crying?” but all I could think of was how I would have to ask someone else to captain my soccer team and where and when I could tell my family. I decided to tell my husband that night, but not my daughter. She’d just gotten her driver’s license the night before. That’s such a milestone. I couldn’t ruin it for her so quickly.

It was thoughts of her that brought the only tears to my eyes that day, when Dr. S suggested I be tested for BRCA1 and BRCA2. She recommended this course of action because I was “young” and one of my aunts also got breast cancer early, and then got it again thirty years later.

The idea that I might have passed on such a gene to my only child scared me more than anything else I might have to face.

Cancer Lesson #3: The Odds Are in Your Favor

Cancer Lesson #3: The odds are in your favor.

According to both my OB/GYN, and later my surgeon, there was an 80% chance that my lump would not be cancerous or even pre-cancerous.

Of course, I already knew that. I’m a librarian. Practically the first thing I did after finding my lump was to look up what it could be and what would happen next. The resources I read were pretty unanimous; I’d probably have a mammogram and/or ultrasound, possibly followed by a biopsy, so it was no surprise when my OB/GYN, Dr. K, advised that course of action.

The surprise came when I asked if I could have the tests done that day. My appointment was the first of the day — probably added to the daily rota after I called telling them about the lump — and consequently Dr. K’s secretary had not yet arrived. I was stunned when he commandeered her computer to schedule the mammogram and ultrasound for later that day.  I can’t imagine any of the doctors I’d had in the past making that effort.

Still, it appeared even Dr. K has limitations. He told me a surgeon had to order the biopsy, and he didn’t know how to use the software to set an appointment with the one he recommended. He left that task for his secretary.

Addendum: If you’re in a similar situation, you might want to check out WebMD’s information on what to expect after you find a lump in your breast. 

Cancer Lesson #2: You Should Probably Mention the Lump

Cancer Lesson #2: When you call for your appointment, you should probably mention the lump. 

I found my cancer during one of the nightly boob shifts mentioned in Cancer Lesson #1. Only half-awake, my hand touched on something that can only be described as a lump. I thought, “Hmm, I really do need to call for my appointment,” and promptly fell back asleep.

In the shower the next morning, I did a breast self-examination (BSE) and the lump was still there.

I hadn’t been dreaming.

Still, I didn’t mention what I’d found when I scheduled the appointment through the central booking desk that handles my doctor’s schedule. I kept hoping it was a blocked duct or something that would go away on its own.

The earliest appointment they could offer was three weeks away.

I took it, and spent the next twenty-four hours touching that side of my breast again and again, reconfirming my discovery. If you’d seen me, you’d have thought I was a sexual deviant with an obsession for feeling myself up.

Eventually, I realized I couldn’t make it through three weeks before talking to my doctor; I called the central desk again.

“I made an appointment for my yearly exam,” I told them, “and I probably should have mentioned that I found a lump.”

No more central booking. I was connected straight to Dr. K’s nurse who offered me an appointment the following day.

 

Cancer Lesson #1: Don’t Ignore the Postcard

Cancer Lesson #1: Don’t ignore the postcard.

My postcard came in October 2010 – maybe earlier – reminding me it was time for my annual checkup. And while I didn’t exactly ignore its summons, I certainly didn’t rush out to make an appointment, merely jotted that task on my to-do list, right next to a reminder that I was long-overdue at for a dentist visit too.

Looking back, I can see there were signs even then that cancer was growing in my right breast.

Since starting menopause, my breasts had gotten looser, and sometimes when I slept on that side, I needed to rearrange myself to get comfortable, something I assumed larger-breasted women had been doing all their life.

I didn’t give it a second thought; I was too busy enjoying the fact that I had cleavage for the first time in my life — an exciting development for someone whose bras have never gone beyond the A range.

Only after being diagnosed did I realize that discomfort was almost certainly my cancer.

Would it have made any difference if I’d gone to my OB/GYN as soon as I got the card? My doctors say probably not.

But there are other, more aggressive, breast cancers where a month or two could affect treatment options, possibly even the patient’s prognosis.

So, don’t ignore the postcard.

Clip art from Mammographysaveslives.org, where they’ll send you an annual email reminder.

Cancer Lesson #88: You Never Forget Your Anniversary

 

Cancer Lesson #88: You never forget your anniversary.

Six years ago today, at about 9:30 am, I was diagnosed with breast cancer.

I will celebrate being alive today.
And tomorrow.
And the day after tomorrow.
And the day after that, for the rest of my days.

Cancer Lesson #87: No More Port in a Storm

About a year and a half after my chemo ended, I got an EOB (Explanation of Benefits) for a “medical procedure” (one of my favorite euphemisms of all time) from our insurance company. This form explained how much they would and would not pay, how much the hospital would write off, and how much we owed. Since I couldn’t remember any recent appointments, I thought the hospital had mistakenly billed our insurance for someone else.

My daughter reminded me that I’d gone in for a port flush — a process so minor that I’d forgotten about it. A nurse stuck me in the arm — thereby accessing my port — ran saline through the device to keep it clean, and gave me a shot of Heparin to help prevent clots. Total time elapsed: About five minutes.

Seriously, it probably took longer to take off my jacket than it did for the “procedure.”

Imagine my shock when I read the following figures on the EOB.
Sterile Supply — $17.00
Procedure — $588.00
Insurance Company Payment — $309.76
Insurance Company Adjustment — $217.80
Amount You (I) May Be Billed — $77.44

I was sure it was a coding error.

When the actual invoice arrived, I immediately called the “Questions about your bill?” number. After three days of phone tag — don’t get me started on that topic! — I finally got to speak to a person, who told me the invoice appeared to be coded correctly.

How could this be? When I visited my doctor and have a port flush and have blood drawn, the bill is less than $600, more like $200.

The insurance lady couldn’t answer that question.

I understand medical treatment is expensive. No one survives any kind of major or chronic illness without learning that. But $600(!) for a five-minute treatment is beyond expensive.

It’s insane.

I asked if there was any way I could protest the exorbitant fee and learned I could dispute the bill.

I did.

I heard back a few days later. No surprise, they said the bill is correct. These costs, it seems, are set by Medicare and not the hospital.

Keeping a port means having it flushed every two months. How could I reconcile having our insurance waste $1,858.56 a year on this? And the $464.64 that I would be paying could certainly be better spent (perhaps on my daughter’s college texts?).

I had to have to have the device taken out, which really ticked me off.

Explanation of how a port works can be found at:http://tinyurl.com/y8snrty   Image above from same site.

If you haven’t read Cancer Lesson #13 and  Cancer Lessons #34, you may be wondering, “Why does she want to keep the damn thing anyway?”

Read them now.
I’ll wait.

After my MRI, I was bruised from several inches above both elbows to several inches below.  I wish I’d taken a picture.

I apologize for whining, but back then I had blood drawn every time I see my doctor. This meant I could look forward to a lot of poking and prodding around in my arms as the nurses try to find a vein.
Or, as they like to call it, I’ll experience a lot of “pinching.”

Still, chemo nurses are the best in the business when it comes to finding a vein. And it turned out I was making a tempest in a teapot.

That’s good.
Because I have no more port in a storm.

Addendum: Looking back, I know I wanted to keep my port for if/when my cancer came back. It’s the same reason I still have my wig. Pessimistic? I don’t think so. It’s more like carrying an umbrella because you know then it won’t rain. Also, in the interest of fairness, I should mention I asked a nurse about this. She said since ports access veins directly, what I called “poking” truly is a procedure, which can go very wrong if done incorrectly. I never did find out why it was cheaper to visit my oncologist, have blood drawn and my port flushed.