Cancer Lesson #87: No More Port in a Storm

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.

ImplantablePort_2011Explanation 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 #86: It’s the Little Things that Matter

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。

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

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. curly1Okay, it only looked like that to me.
It actually looked like this. curlyApparently, 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.

  1. I’m viewing the memory of my younger, pre-cancer self’s hair through rose-colored glasses.
  2. Chemo had a lasting effect on my follicles.
  3. I was on Anastrozole, which is known to cause hair thinning.
  4. I’m getting older, and hair sometimes thins as you age.

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!”

still curly

 

 

Not a Cancer Lesson, but an Explanation

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.

 

Cancer Lesson #84: Locks of Love

Cancer Lesson #84: Locks of Love

If I seem a bit obsessed with hair, that’s partly because people associate hair loss with chemo, and not because I’m especially vain about my hair, though I used to be.

My wavy chestnut strands dwindled in importance when I was diagnosed. And when the doc confirmed I would lose those strands with chemo, I decided it made sense to get them cut before surgery. A shorter cut would be easier to care for during my recovery and might make the inevitable loss of hair a little less stressful.

It also made sense to donate the hair instead of leaving it on the salon floor. I was going to be bald, but maybe my hair could help someone suffering a more long-term hair loss.

So, here’s an idea. If you’re making a similar change in hairstyle (hopefully not because you’re going to lose your hair to chemo), perhaps you’d like to donate your clipped ponytail to  Locks of Love.

The process is simple, and it’s a nice thing to do. Just click on the link above for more information.They’ll even send you a certificate of appreciation like the one below.

And, for what it’s worth, you’ll earn my thanks too.certificate-of-appreciation2

 

Cancer Lesson #83:Stop Viewing Pinktober Through Rose-Colored Glasses

Cancer Lesson #83: Stop viewing Pinktober through rose-colored glasses.

It’s October 1, and today someone was diagnosed with breast cancer.

Correction: The diagnosis wasn’t handed to one person, but to about 680 in the U.S. alone (calculated using the number of expected diagnoses in 2016 from the statistics at Breastcancer.org).

Over 600 people have just had their lives hijacked — temporarily or permanently — by a disease that a week ago belonged to someone else.

Breast cancer is now theirs, a choice they didn’t make and one in which they had no say. Neither heroes, nor victims, these men and women are just people  — like myself and countless others — who have been handed a diagnosis they probably weren’t expecting and aren’t quite sure how to face.

The same thing will happen tomorrow, and the day after, and the day after that — long after the “breast cancer” merchandise, festooned and beribboned in pink, is languishing on the clearance rack.

And guess what — announcing your relationship status or the color of your underwear on Facebook won’t help any of them. Many of the pink articles you see in stores won’t either. They are produced merely to line the pockets of those companies that produce them.

Some argue these activities and merchandise raise awareness of the disease, but I think by now we’re all pretty aware. Don’t you?

Perhaps it’s time to move beyond awareness to actually doing something.

If you happen to find Pinktober a good reminder to support breast cancer research, I thank you. But I would ask that you make sure your contribution makes a difference, that your hard-earned money is going to a charity that actually does something to prevent, treat, or research breast cancer or to support its patients. You can do this by following the simple guidelines at Thinkbeforeyoupink.org. Should you choose to delve further into this website, you’ll see it raises other valid concerns about the commercialization of my disease.

I’m not a curmudgeon about this issue, completely against the “pinking” of breast cancer. In fact, if you follow this blog, you know when I was first diagnosed, my co-workers wore pink ribbons to show their support, a gesture that moved me to tears. So, my relationship with the color is somewhat conflicted. (See “Cancer Lesson #25: The Wearing of the Pink.)

But breast cancer isn’t pretty. No disease is, and all the pink in the world won’t change that. I find as the years pass, I object more and more when companies turn an illness into an opportunity to not only profit, but to sexualize a disease that can kill. (See Psychology Today: “Do Sexy Breast Cancer Campaigns Demean Women?)

I know I am one of the lucky ones. Five years out, I’m still here to write complain about this issue. For this reason, I rarely talk about my scars, about how they sometimes ache when the weather changes, how I can feel them pull when I stretch too hard, how wearing a bra gets uncomfortable after a while.

Then there’s the Anastrozole side-effects: osteoporosis (which my oncologist assures me will remedy itself once I’m off the drug), hot flashes that make it impossible to get a full night’s sleep, the padding of extra pounds I can’t seem to lose, and hair that falls out by the handful (not as extreme as it was with chemo, but disheartening nonetheless).

Because I know I’m lucky, it’s unusual for me to discuss the physical reminders of my experience. I write more about how cancer affected my outlook, my way of thinking about the future and about the realization that we all die.

Still, having cancer changed me both physically and mentally, and though I cannot tell you exactly how it will affect those diagnosed today, I know it will change them too, in ways they can’t foresee.

So, the next time you get a Facebook post that breathlessly asks you to share a “girly” secret status to support breast cancer, think of the 680 people who got the news today and whether that status is going to make a difference to their lives. (And, by the way? We all know men get breast cancer too, right? So, the “girly” idea doesn’t quite fly.)  Before you buy that new lipstick or pair of socks to “support breast cancer,” find out exactly how your purchase is making a difference.

As I said, I’m lucky. I am able to do all the things I did before I got cancer — ride my bike, play soccer as badly as I ever did, go flying with The Engineer. IMG_0333

On this first day of Pinktober, I’m praying the 680 people getting the diagnosis today are able to share a similar future.

Addendum: In reviewing this post before publication, I must add three things. First, I should say I have joined in the “girly” Facebook games in the past and admit they could be viewed as just having fun. That’s OK, as long as the participants realize they have little to do with supporting breast cancer patients. Second,  this post is my opinion. I would never presume to speak for other breast cancer patients,  former or current. And last and most importantly, this is an issue where the patient gets the final say. So if you want to know how you can best support someone who’s been diagnosed, try asking them.