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 #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

 

 

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. 

 

 

 

 

Cancer Lesson #81: I Am Hope.

Cancer Lesson #81: I am hope.

When I did the American Cancer Society’s Relay for Life a few weeks ago, I didn’t introduce myself with the rest of the survivors. This year, it felt a little too self-congratulatory, celebrating a result over which I had minimal control.

My mind began to shift, however, when the “Honorary Survivors” spoke. The “Junior Honorary Survivor,” who was about fourteen, talked about how she understands there are some things you can change and some you can’t. She said how important it was to focus on what we can do, instead of worrying about what we can’t, which I thought was very wise for one so young.

The adult spokesperson was a theirteen-year survivor of pancreatic cancer. This is almost a miracle, and that fact alone made me begin to think a little differently. (The Hirshberg Foundation for Pancreatic Cancer Research quotes the American Cancer Society as giving an average five-year survival rate of about 6%.)

My perspective began to change that day, but the lightbulb moment came when I was folding a load of laundry earlier this week.

I am hope. I am hope. I am hope. FullSizeRender-2
On t-shirt after t-shirt, the message stared up at me. IMG_0347

I am hope.

Not because I did anything special.  And certainly not because I deserve it more than those who are gone. But just as my friends’ deaths were beyond my control,  I also don’t want to change the fact that I’m still here.

It’s time to focus on what I can control , to consider what I can try to be for others.

Hope.
A beam of light to those who are beginning treatment.
A voice of — if not reason — then at least perspective on what the future might look like.

I am the hope, that five years after surgery and chemo, you can still ride a bike, play soccer as badly as you did before, enjoy your family and loved ones.

I am the hope that, like me, you might take a little extra time to appreciate the beauty of our world — the green of the trees, the glimmer of sun on water, and yes, even the raucous cacophony of cicadas.

I am the hope that you will survive to become hope too.

And I am the hope that we will always remember those who didn’t.IMG_0348

Namaste, Pat, Dale, Maribeth, and everyone else who is no longer with us.
The light within me salutes the light within you, the light that lingers on in those you loved.

 

Cancer Lesson #80: Planning for a Day I Hope Never Comes

Cancer Lesson #80: Planning for a day I hope never comes.

I wouldn’t tell my daughter right away. She was graduating college five days after my appointment. How could I ruin the occasion?
Should I take an extended sick leave this time? How would that affect my retirement?
What about my bike trip? Could I put off treatment until I returned?
My soccer cleats and shin guards needed replaced, but I’d do that when I knew I’d get the chance to wear out both.

Once again, it was time for my mammogram and oncology check-up.
Once again, I was convinced the test would find cancer.

I’m not a hypochondriac, though my thoughts before my appointment might make you think otherwise.  After jumping to the wrong conclusion (cancer) several times in the last few years, I refuse to do it again. I decided unless cancer re-presented itself in a way that brooked no disagreement, I won’t make myself crazy looking for it.

At 55, my body is changing (without my permission and certainly not for the better!). Because I’m reasonably active — no marathons in my future (or past, if I’m entirely truthful) — I get the occasional pain in places that never hurt before. If I ran to the doctor every time, well, let’s just say he’d soon lose patience with such nuerotic behavior.

And yet, every time I have an appointment, I find myself planning for that day, the one I hope never comes. The day they tell me my cancer has come back.

It’s probably because I’m a bit — The Engineer and Darling Daughter might say more than a bit — of a control freak. I like to think ahead, to have a plan, though I know cancer doesn’t give two hoots about anyone’s plan.

For that matter, life in general doesn’t give two hoots about my plans. I know this. I truly do.

It doesn’t stop me from making them. I guess I want to be ready for anything, even a cancer recurrence. Ha! As if anyone is ever ready.

Readers, my mammogram was clear. My twice-yearly visits to Dr. H are now switched to a single, annual appointment. Darling Daughter was graduated (Summa cum Laude, Phi Beta Kappa, Departmental Honors, and a prize for her senior thesis — yes, I’m one proud mama!)

There was no need for sick leave or worrying about my retirement, so I was able to enjoy a lovely bike trip  around Chincoteague Island.*IMG_0210I bought the cleats and shin guards. IMG_0333And I’ve put my cancer planning away.
At least until next year.

*Warning:If you ever visit Chincoteague, take insect repellent. The mosquitos are vicious!

 

 

 

 

 

Cancer Lesson #78: How to Create a Legacy

This cancer lesson is from a post on my other blog. 

Cancer Lesson #78: How to create a legacy

How do you create a legacy? If you’re a philanthropic billionaire, you might donate money to a school or a hospital or a children’s home in the hope they’ll name it after you. If you’re an earthbound saint like Mother Theresa, you give up your worldly goods and spend your time ministering to the poor.

And if you’re my friend Pat, you create a legacy by being who you are and sharing your gift for quilting by making them for others. Pat has created quilts for new babies, weddings, the Guthrie Center (she’s a huge Arlo fan), and for charity auctions including Relay for Life and the Ovarian Quilt Project. She even made one for me, which I wrote about last April, though I’m still not sure what I did to deserve it. friendshipquilt

However, a big part of Pat’s legacy is the way she’s dealt with ovarian cancer — continuing to live her life with laughter and fun, through its trials and pain, exhibiting more strength and grace than most of us could muster.

Now, she’s receiving hospice care, which you already know if you read either of my blogs. What you don’t know is how the quilting community has rallied round to make sure Pat’s legacy continues.

First, two  women in her quilting guild and another friend offered to help finish the quilts Pat still had in progress. Then, the rest of the guild volunteered to take charge of the fabric in Pat’s sewing room — a huge task since there’s enough to open a small quilt shop. The group plans to use the fabric to make quilts to donate to charities in Pat’s name.

I have to pause to compose myself whenever I tell people this because it always makes me cry.

<deep breath>

But Pat’s legacy is bigger than that. Like me, she started following “Tall Tales from Chiconia,” the blog of a fellow cancer survivor and quilter who lives in Australia. This blogger was organizing a quilting event called Foot²Freestyle, where 12 members from around the world (USA, UK, Netherlands, France, Germany, and Australia) were assigned a month to receive three blocks from each other member and make three of their own to compose into a quilt. The blocks are 12″ square (the “Foot²”) and could be made in any design the quilter chooses (the “Freestyle”). The recipient could choose three colors for her quilt.

Pat was to be “Miss May,” and her colors included teal, which is associated with ovarian cancer support. But things changed.

<deep breath>

The group responded by bumping her up. Not only are they making the quilt for Pat, who will donate it to the quilt project, they somehow through the magic of computers, created a virtual quilt for her, in case it isn’t done in time. (There’s an awful lot of mailing involved with quilt squares coming from three continents.) Here it is. Gorgeous, don’t you think?pats-virtual-quilt

There’s more. Kate, author of “Tall Tales of Chiconia,” has asked her fellow bloggers to share this story, along with information about the symptoms of that sneaky bastard ovarian cancer and a link to their country’s national ovarian cancer support organization. In the US, that organization is the Ovarian Cancer National Alliance. 

The symptoms, alas, are equally vague no matter where you live. As Kate put it:

“We urge you to familiarise yourself with the symptoms of ovarian cancer — symptoms which are so common and so ephemeral that many don’t consider them symptoms at all. For this reason, ovarian cancer is rarely diagnosed in its early stages, often leading to a poor prognosis. Some of you reading this are men, in which case, please pass the information to your mothers, wives, sisters or daughters. It’s important.”

Here are the symptoms, quoted directly from the Ovarian Cancer National Alliance website: “Women with ovarian cancer report that symptoms are persistent and represent a change from normal for their bodies. The frequency and/or number of such symptoms are key factors in the diagnosis of ovarian cancer. Several studies show that even early stage ovarian cancer can produce these symptoms.

  • Bloating
  • Pelvic or abdominal pain
  • Difficulty eating or feeling full quickly
  • Urinary symptoms (urgency or frequency)

See your doctor, preferably a gynecologist, if you have these symptoms more than 12 times during the course of one month and the symptoms are new or unusual for you.

Kate has also offered to make a quilt for the Australian Ovarian Cancer organization and invited her fellow bloggers to either join her or make a similar offer to the organization where they live.

And now, I have a favor to ask. To help spread Pat’s legacy, I hope you will please share this post, or at least the symptoms and a link to the Ovarian Cancer Alliance.

Because we all have Pats in our lives.

<deep breath>

And it’s very hard to lose them.

Cancer Lesson #77: It’s Not Always All About Me

I feel guilty writing this post because this lesson is the kind where someone else gets the pain, and I get the lesson.

Clearly, this isn’t fair — which makes it partly a repeat of Lesson #43 — but it’s different too, because this post is about a friend just reached the stage where it was time to call hospice.

This seems very wrong, especially since she was diagnosed after me, and yet, we’ve known for some time it would come to this.

Up til now, I’ve managed to not think about it, reasoning (or rationalizing) quite logically that I would deal with it when it comes.

Except it’s not me who has to deal with it; it’s her.

I can only do and be whatever my friend needs or wants. And sometimes she doesn’t know what that is. After all — as she’s pointed out several times — she’s never done this before either.

“Put yourself in her shoes,” I think. “What would you want?”

But I am not my friend, and this has nothing to do with what I want — or even what she really wants, for that matter. That option is no longer on the table.

So, I will visit when she is up to it, bring her sundaes and applesauce for as long as she can eat them, make stupid jokes, and sometimes cry. I will try to remember to listen more and talk less, to continue to enjoy the friendship we have shared for more than fifteen years.

And I will send this post into cyberspace, asking you — my friends and followers — to spare a moment for a prayer, or a wish, or some positive thoughts that my friend will go out of this life with all the love with which she’s lived it.

I will remind myself that it’s not about me.

Still, here I am writing this post, making it about me.
And in the end, it kind of is — just a little — for I am losing my friend.

Stats-31-300x186Stats-1-300x251

These tables are from the Ovarian Cancer National Alliance, an organization that raises awareness of the symptoms of ovarian cancer and supports research for a cure. Ovarian cancer is a particularly sneaky disease, rarely diagnosed in its early stages.
I hope you will take note of the symptoms.

Cancer Lesson #57: Sets Don’t Have to Match

Cancer Lesson #57: Sets don’t have to match.

Warning: If you aren’t interested in details about the after-effects of reconstructive surgery, you might want to skip this lesson.

I used to have a matched set.

You know – a matched set of them. Boobs, breast, tits, knockers, hooters, dueling banjos, marimbas. Call them what you like – I had a surprisingly symmetrical pair.

Probably because they were too small to be uneven.

Then came cancer, and my banjos were no longer dueling. Instead, one was trying to kill me. She left me no option but to cut her out of the picture. Or should that be out of the band?

Clearly, there’s no way you can remove a breast, replace it with stomach tissue, and expect it to immediately look exactly like the other.

Not that I was complaining. I was quite happy to wake up with two boobs, matching or not. It was one of the reasons I decided on immediate reconstruction using my own tissue rather than implants.

It was the right decision for me, which doesn’t mean it’s the right one for everyone.

Anyway, I was pleasantly surprised at the appearance of my new, er, marimba, even if it wasn’t identical to my other one. I was okay with that, though I wondered how my, uh, instrument would look when healed.

Dr. K said he could transform my asymmetrical beauties into a matched set.

I have to say he came close.

True, this involved having my new nipple tattooed so they were a similar color – that’s the TMI part – and I needed some touch-up surgery, which had been expected.

The weird part was that surgery involved liposuction.

On my breast!

Of all the places on my body from which you could suck fat, I never expected to have it taken from there.

Also, sometime after getting the tattooing done, I remembered that I’d considered, but decided against, getting a second tattoo when I turned fifty to match the one I got to celebrate my fortieth birthday.

Turns out I got one after all.

Life is bizarre sometimes.

Cancer Lesson #56: Do the PT.

Cancer Lesson #56: Do the PT.

It’s amazing what a little stretching can do.

You see, one of the side effects of an axillary dissection is nerve and muscle damage, which can affect the arm’s range of motion.

Because of this, I began reaching for things with my right arm immediately after surgery, stretching it beyond the comfort zone at every opportunity. I was determined to regain as much use of it as I could.

My reach exceeded my grasp during those first few weeks, but eventually movement became easier, and when I finally started PT I had a head start on things.

After I began meeting with my physical therapist, I did the exercises she assigned as often as I could manage (though probably not as often as I should have).

The effort paid off. A few weeks later she said I had recovered complete range of motion.

Since not every survivor reaches that stage — and there’s no way of knowing who will or who won’t — I was thrilled.

Later I had more therapy focusing on core strength.

This involved sit-ups.

Sigh.

Physical therapy made a huge difference , and I can now do just about everything I could before my diagnosis.

Still, the body remembers everything. Sometimes my stomach feels tight for no reason I can discern. Or my arm will ache after heavy exercise.

It’s a small price to pay, I think. I am so lucky to not just be alive but to be able to actually live.