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.
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.
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: 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.
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.
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.
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.
Cancer Lesson #64: It’s the little things that matter.
In January 2013, I brought some new bras. And, no, the word “little” in the title is not a reflection of their size (though it would be accurate). If that’s TMI, so be it.
You see, for a year, nine months and 21 days, I wore sports bras, camisoles or — and this was a big step forward — the sort of garment you’d buy a ten-year-old who’s outgrown her undershirts.
Everything else was uncomfortable and occasionally outright painful. The kind of bras I’d worn in the past felt like they’d been designed for the sole purpose of rubbing my scars.
For those who don’t understand why this matters, I ask you to imagine trying to wear a big girl wardrobe over something that looks like this.
日本語: スポーツブラを着用しているマネキン。 (Photo credit: Wikipedia)
They’re called sports bras for a reason — these undergarments were never meant to be worn beneath anything less athletic than a t-shirt.
Things improved when I had what they call a “revision,” a process by which they remove the scarring and replace it with other soft tissue (read “fat”). I finally graduated to the training bras, which I could handle for a couple of hours at a time.
In January, however, I found two average looking soft cup bras that were actually comfortable.
Oh, they were nothing exciting — no La Perla, or even Victoria’s Secret — yet it felt good to be able to wear something that’s comfortable, doesn’t look stupid under a blouse, and is moderately pretty. Something feminine.
Maybe this doesn’t seem like a big deal — nothing compared to having survived cancer — and it isn’t. But cancer changed me, both physically and emotionally, and there was, and is, no way of knowing which of these changes will be permanent. I was happy because I thought I’d be wearing ugly undergarments for the rest of my life.
Being able to wear a regular bra again was a win. Even if it’s small as victories go, I celebrated.
Make no mistake about it: little things matter.
Addendum: It’s been nearly six years, and my scars still hurt sometimes when I’ve worn a non-sports bra all day. And I have a friend, diagnosed a year after me, who is still uncomfortable in anything but camis. On the other hand, I believe some women don’t have these issues at all. Everyone is different.
Cancer Lesson #85: Be prepared to be nicknamed Curly.
So, about a year after my diagnosis and eight months after my final chemo, I had actual hair. Not stubble. And not the peach fuzz I had within a few months, which my daughter found irresistible (she kept rubbing my head like it was Buddha’s belly), but actual hair.
It looked something like this. 
Okay, it only looked like that to me.
It actually looked like this. 
Apparently, it’s not uncommon for hair to grow back dark and curly. In my case, it was definitely more curly (when it used to be only wavy), with some parts darker, and a whole lot more gray (darn!).
I didn’t complain (well, not much). After all, I had hair again. I just wondered if it would stay curly, go straight, or go back to being wavy like it was before. According to one discussion board, it could go, er grow, a variety of ways. (http://community.breastcancer.org/topic/69/conversation/698807)
Funnily enough, I got a lot of compliments on my curls. This was great, partly because I again had hair to compliment, and partly because there wasn’t not a darned thing I could do about the way it was growing.
I did find several articles online about how to care for “after-chemo” (such a nice phrase) curls including this one from About.com. They include the “buzz cut” option, and I actually met spoke a woman who got fed up enough to try the 1″ cut. She dyed it blond, and seemed happy with her choice.
There’s also a website called Naturally Curly.com with hints on handling curly hair. I learned about “plopping,” which I meant to try, but forgot.
Instead, I wore a lot of headbands and tried to remember the crazy curls were probably temporary.
This proved to be the case. My hair eventually returned to its usual waviness, though it still isn’t as thick as I remember it. There are several possible reasons for this.
Realistically, it’s probably a combination of all of the above.
Still, you might remember my mantra: Happy to be here. Happy to have hair. And the second part is optional.
Nearly six years later, it’s still true.
P.S. Three months later, I checked in with this photo, captioned “Still Curly!”
When I began this blog, it was with the intent of updating and adding to the “Cancer Lesson” posts I’d written on my “Reading, Writing, Ranting, and Raving” blog, with the eventual aim of self-publishing these lessons in a book. As such, I began to re-read and re-write these lessons with the perspective that only the passing of time can provide.
I was pleased to discover most of my lessons still ring true.
Being diagnosed with cancer, going through treatment, and coming out the other side, can change a person. Again, it is only with the passage of time that we see how we have changed.
My life is vastly different from the one I led six years ago, and I know many of the decisions I’ve made are informed by a newly strengthened understanding that my time here, like everyone’s, is limited.
I retired from the library in November and now work part-time in a grocery store and one morning a week at a yoga studio. Earlier in the year, I chose to stop writing romance because it had begun to feel like work, like an unpaid job I no longer enjoyed. But I still wanted to “finish” this blog series, determined still to publish these lessons. This had been my goal for so long, I almost forgot why I’d decided on this course of action to begin with.
The reason was, of course, so others in a similar situation would feel less alone.
This duty weighed on me, and that’s part of the reason I’ve been so very sporadic about posting. It’s an unattractive aspect of my personality, but guilt makes me contrary, and so I put off writing.
Then, as I sometimes do, I woke up in the middle of the night about a month ago with a startling realization. I don’t need to publish these blogs in a book of any form because they are already published here, freely available to any who would care to read.
And so, I have finally returned to my cancer lessons.
If you are new to reading this blog series, I should warn you, the lessons — like life itself — are not necessarily in logical order. There are two reasons for this. As I’ve said, life lessons don’t always come in an orderly fashion. Also, when I planned to publish these lessons, in order to make the book worth buying I took the first lessons off the blog. That way, people would not have access to the full series for free.
I will be re-posting these in the near future, but they will be out of order. If you want to read the lessons in order, I suggest you use the search box.
In the six years since my diagnosis, I’ve come to believe that a big part of the reason I’m still here to write these blogs is luck. There are many cancer patients who do everything right, who undergo much more rigorous treatment than I did, and they are no longer with us.
Does this mean I am discounting the many ways a person can make it less likely s/he will die of cancer?
No, but until we understand what causes every form of cancer in each person it chooses (and I’m not convinced we ever will), I will remain thankful that, at least for now, I am one of the lucky ones.
Thank you for reading.
Keeping A-Breast: Cancer Lessons 