Archive | October 2013

Why I Can’t Wait for My Colonoscopy

Photo Credit: abcnews.go.com

Photo Credit: abcnews.go.com

You’re probably wondering what’s wrong with me.  Why would anyone in their right mind look forward to a colonoscopy?

It’s simple.  I can’t wait for the “prep” to be over.  But it may not be for the reason you are thinking…

Of course the prep itself is rotten.  It has been three days since a morsel of food has crossed my lips.  And drinking this God-awful stuff that wrenches your insides and makes you feel as though you are tethered to toilet is no picnic.  And because Palliative Care (see Palliative Care at 30-Something: What Does it Mean? Part I and Part II) has me on around-the-clock opiates, I was required to do the “Extended Preparation” which includes “extra” days of not eating and of a clear liquid diet, a few different types of unpleasant liquid solutions that make you “go” with extreme urgency, pills that also make you “go,” and enemas.  Did I mention I’ve gone 3 days without eating any food and have been consuming only clear liquids?**  Can you tell this one is getting to me

Photo Credit:  pregnancy.lovetoknow.com

Photo Credit: pregnancy.lovetoknow.com

Right now I’m trying to drink the last 4 liters of yucky stuff from the pharmacy in the prescribed 3 hours, but I can’t keep it down.  I have been vomiting so much that I’m not sure there is anymore liquid to throw up — until I throw up again.  I stop drinking entirely this afternoon.  And then I have to give myself 2 enemas in the 2 hours before the procedure, holding the contents of the enema bottles “in” for 15 minutes per bottle before I can go to the bathroom.

If you’ve ever had a colonoscopy, you are probably nodding your head now.  You know how rotten the prequel to this procedure can be.  Or maybe you’ve blocked it out of your mind and forgotten?  If so, I’m sorry for reminding you.

I must admit that I had forgotten.  Tucked the memories of my last “clean out” neatly away in my brain.

Okay, really what happened was that they were replaced by much more traumatic scenes. The last time I did this it wasn’t for a colonoscopy — I honestly can’t recall my last one, let alone the prep.  I just remember waking up shocked that I was dressed and asking who had put my underwear back on.  The answer was “me,” but I was so out of it from the anesthesia that I had no recollection of the day’s events.  Sounds like spring break gone bad!

No the last “prep” of this kind that I am talking about was for my hysterectomy and salpingo-oopherectomy last year.

It’s no wonder the prep is not what I recall about the events leading up to this surgery.  I had complex pelvic masses.  One was so large that you could feel it when you touched my belly.

I needed to have my right ovary removed the day after Halloween two years ago thanks to the side effects of Tamoxifen* [see below].   The ovary was filled with a crap-ton (urbandictionary.com defines a crap-ton as “4 shit loads”) of septated cysts.

And here I was facing the prospect of losing my remaining ovary and my uterus.  At the age of 35.

A part of me wanted to be sure of what they were seeing before I went under the knife again.  This was the part that didn’t want to have to go through another major surgery and recovery.  And this was the part that was still holding on to the hope of giving birth to a little girl, the daughter I had dreamed of having from the time I was a little girl myself.  It was also the part that wanted to be absolutely sure of what they were seeing before I let them cut into me again.  And this was the part of me that was just tired of all of the cancer crap.

And then there was the part of me that wanted to shake some sense into the aforementioned part.  This was the part of me that, after each scan or exam, grew more and more fearful that what I might be dealing with was ovarian cancer [breast cancer increases this risk], or ovarian mets (metastasis) from the breast cancer to the ovaries.  I was also dealing with the concern that I could have a new primary cancer in my uterus.  I say a new primary rather than a metastasis in this case because Tamoxifen upped my risk of developing uterine cancer.  “Tamoxifen acts as an anti-estrogen in breast tissue, but it acts like an estrogen in the uterus. It can cause the uterine lining to grow, which increases the risk of endometrial cancer.” [Source: cancer.org]

In a short period of time I had multiple gyn exams, transvaginal and abdominal ultrasounds, an MRI, and a CAT scan.  Each of these tests confirmed the presence of these complex masses.  And they were growing.

At my last ultrasound appointment, the technician asked me to stay on the exam table while she went for the doctor.  When they came into the room together, my doctor told me that I needed to go to the hospital immediately, and she sent me to the emergency room.  I remember scrambling because it was a Tuesday afternoon and I didn’t know how long I would be in the hospital, but I knew it would be long enough that I would need to find somebody to pick my boys up from elementary school.

Another CAT scan was performed in the Emergency Room.  It didn’t look good.  The thought that these masses could be ovarian mets or ovarian cancer scared the hell out of me.  And there wasn’t really a decision to be made.

After meeting with the leading GYN oncologist in our area, my surgery was scheduled for the next week.

But a part of me wondered if there was any way out of this.

And then I began hemorrhaging just before my surgery.  There was so much blood.  I remember trying to get into the shower before an appointment.  It was just a few steps from where I disrobed to the shower, and just with those few steps, I managed to cover the floor with a large pool of blood.  I was as pale as a ghost.  And I felt like I was a stone’s throw from becoming one.

When I went in to see my regular gyn, she was clearly concerned that this was further evidence that I might have uterine cancer.  She did a biopsy that day and prescribed drugs that would help to lessen the bleeding until my surgery.  They didn’t really help, so I was almost “thankful” that my hysterectomy was just around the corner.

My gyn oncologist removed everything that was left of my female parts, with the exception of the one that starts with a “V,” but even “it” did not come out unscathed.   Since he took my cervix, the surgeon had to use the top of the vagina to create what’s known as a “vaginal cuff.”

Though I had signed all of the consents prior to my surgery, including the special one you have to sign when you are of childbearing age (indicating that you understand that you are undergoing surgical sterilization), I was still shocked to wake up to find that everything was gone.  Everything.

I spent 4 days in the hospital after the surgery.  It was a difficult 4 days, emotionally and physically.  I required blood.  I needed enemas and catheterization.

I could barely get out of the hospital bed, let alone make it down the hall — for days.  {The blood transfusions helped with this, thankfully.}

And I had a massive migraine.  As a chronic migraine sufferer, I am no stranger to headaches.  But this was worse than any headache I had ever experienced.  The consensus was that the cause was linked to the fact that my estrogen levels had soared in the year before my surgery, and then, suddenly, plummeted as a result of the surgery.  And nothing would alleviate the pain.  Not the morphine drip, not the oxicodone or the oxycontin, not the dilaudid.  Nothing.  I needed my hormones back.

A normally positive person who tries to see the good in everything, I lay in that bed, broken and empty, as I awaited the pathology report.  I felt as though I was a shadow of my pre-cancer self.  I pictured Hansel and Gretel walking on that path through they woods, leaving bits of bread behind so they could find their way back home.  I had been leaving bits and pieces of myself behind on the long and winding road since my diagnosis.  But I knew I would never find my way back home.

So doing this “colon prep” has been especially difficult.  Not just because it’s physically rough, but because it has made the memories of my hysterectomy flood back through gates I had sealed shut soon after the surgery.  As the old saying goes, “Denial (The Nile) ain’t just a river in Egypt.”

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There is more to this story.  But I will have to save the remainder until I am feeling better.  Thank you for reading…

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*Tamoxifen is an antagonist of the estrogen receptor in breast tissue via its activemetabolite, hydroxytamoxifen. In other tissues such as the endometrium, it behaves as anagonist, and thus may be characterized as a mixed agonist/antagonist. Tamoxifen is the usual endocrine (anti-estrogen) therapy for hormone receptor-positive breast cancer in pre-menopausal women, and is also a standard in post-menopausal women althougharomatase inhibitors are also frequently used in that setting.[1]

Some breast cancer cells require estrogen to grow. Estrogen binds to and activates the estrogen receptor in these cells. Tamoxifen is metabolized into compounds that also bind to the estrogen receptor but do not activate it. Because of this competitive antagonism, tamoxifen acts like a key broken off in the lock that prevents any other key from being inserted, preventing estrogen from binding to its receptor.

[Thank you, Wikipedia, for this Tamoxifen info!]

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**In case you are interested, here’s the list of approved clear liquids:  water, Sprite, apple or white cranberry juice, clear or yellow Gatorade/Powerade, chicken broth (nothing in it — NO beef broth), black coffee/tea (no milk or cream), Jell-O (yellow, orange, green only), or popsicles (not red or purple).

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P.S.  As much as I’ve struggled with the prep, I know it’s worth it.  IWith symptoms like pain and rectal bleeding (and with my cancer history), I know it’s better to do this than risk the alternative.  Please don’t let my post deter you from having a colonoscopy.  The “extended prep” is usually not necessary, and the procedure and the prep are over before you know it (and I think my reaction to it is rare?).  They are also far easier than dealing with cancer would be.  So please follow the recommended screening guidelines and do this important test (generally beginning at age 50).  In some cases (like mine), a colonoscopy may be necessary before you turn 50 (or in between the recommended 10 year gap from screening to screening).  If you have a family history of colon cancer or if, like me, you are experiencing issues (i.e. rectal bleeding or a change in bowel habits), please consult your doctor to see if you are in need of a colonoscopy.

“Almost all colorectal cancers begin as a small polyp. If a polyp is found during colonoscopy, it will be removed and this prevents the polyp from every turning into cancer. But if you don’t have your colonoscopy in the first place, then you are throwing away the chance to detect polyps when they are easily treated.” [http://www.columbiasurgery.net/five-reasons-not-to-get-colonoscopy]

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On the Radio

W and Lion

Whoa, oh, oh, oh, on the radio.  Sorry, I can’t get Donna Summer’s lyrics out of my head!

Good morning all…

I wanted to let you know that I will be on the radio tonight.

I almost didn’t mention it because I’m a bit rusty on the public speaking front.  Okay, a lot rusty.  But I reconsidered because I have a vested interest in the segment’s subject matter.  I have been asked to discuss breast cancer, Breast Cancer Awareness Month, pinkwashing, and events like “no bra days” on “The Afternoon Fix” radio show with Chuck Pullen on 1230AM WJOB in Chicago.

Just in case you are interested in tuning in, you can listen live on the station’s web site:

http://www.wjob1230.com/

at 6 p.m. Eastern

(As a head’s up, their stream is .pls format (Shoutcast).  You can listen with iTunes.  Or use Windows Media Player, but you will need to install this plugin ahead of time.  Or you can use WinAmp.)

A representative from Breast Cancer Action will follow me to discuss the “Think Before You Pink” Campaign.

I think it will be worth a listen…

If I don’t screw it up, that is!  But you’ve all given me the confidence to continue to stand up for what I / we believe in, so I’ll give it my best shot [she says with a nervous laugh]!

p.s. I know the photo of W running from the cardboard lion has nothing to do with being on the radio, but I thought you’d appreciate a laugh.  We saw the lion and couldn’t resist!

National No Bra Day — An Update

I continue to be amazed by the comments that have been left on National No Bra Day and Breast Cancer Awareness Month — Or — Put that Can of Soup Down and Put Your Bra Back On and some of my other posts in the past few days.  While I am absolutely astonished by how many people from around the world have visited the blog in the past few days alone (over 100,000 people yesterday alone!), what I am most in awe of is the fact that so many people have left such supportive comments or emails.  While I have yet to respond to the comments (with the exception of a few on the first day), I have been reading each and every comment and email.  That little “your comment is awaiting moderation” blurb you saw if you left a comment means that I have the opportunity to read your comment before it appears on the blog.  Reading through your messages has been an incredibly powerful experience.  I am barely keeping up, so if you don’t see your comment yet, this is why.  But I am grateful that I’m having trouble with keeping pace!  What a wonderful “problem to have!!!

I am both honored and touched that you have chosen to share your thoughts and feelings with me and I am so appreciative of the outpouring of kindness, well wishes, prayers, and gratitude for the post and the blog.   And I have been deeply moved by your stories.  So many people have been touched by cancer in some way and have felt some connection with me.  And I can tell you that after reading your comments and stories, I feel a connection to you and I am truly grateful.

While the vast majority of the comments have been extremely supportive, a few have been less than.  In the interest of being transparent, I am approving ALL comments, including the 99.999% that are supportive and the 0.001% that are less than.  And I feel the need to respond in some way to the 0.001%.  I know this may go over as well as a gift-wrapped pair of socks on Christmas morning, and I am normally not a confrontational person at all, but I feel compelled to respond.  I’ll begin with clarifying that my message is NOT that people who wear pink ribbons are bad!  I know this an easy way for people to feel connected and a visible way to show that you support a cause and that there are a rainbow of ribbons out there.  In fact, I often wear a pink ribbon that was given to me from an organization that gave the money from the purchase to cancer research.  One of my messages — and I believe what so many people have been saying in their comments here — is that pink has become a marketing tool that some companies have used to prey on and profit from well-meaning people who are trying to help.  As one commenter whose close friend was an advertising manager for a multinational corporation said, this practice has been referred to as “the marketing of a disease.”   I know that not ALL companies/organizations are profiting from breast cancer (or using the disease as a way to improve their image), but it is certainly enough for it to be a problem.

And, yes, I do believe that breast cancer has been glamorized and cutesied up by all of the pink. I will stand by that.  From the people I have polled — with and without breast cancer — it has become clear to me that when many people think of breast cancer, they envision smiling women covered in pink having a great time on a walk for the cause.

But as most women and men (and their caregivers/loved ones) who have faced this disease will tell you, there is nothing pink about this cancer — or any cancer for that matter.  And these images of pink actually detract from the fact that this is a horrible, often disfiguring disease with harsh treatments and brutal side effects.  The awareness mission has been accomplished — we are aware that breast cancer exists.  But we still don’t have a real understanding of what causes it and why one woman will develop it and another won’t.  Or why one woman will die from it and another won’t.  And with these awareness campaigns we have largely ignored metastatic disease.  And we have ignored the women (and men) who are suffering or the women who are dying or who have died.  Fine, have the pink, but also incorporate the reality.

In my opinion, we need to get away from the message that early detection is the best prevention and focus our efforts on making PREVENTION the best prevention.  And all of this pinkwashing is making that damn near impossible.  You see some of these companies marketing pink products “for awareness” and “for the cause” or putting pink ribbons on their labels once a year, but then some of their products — like plastic water bottles — are made of materials that have been linked to cancer or they sell products filled with nitrates or foods packaged in BPA-lined cans.  And there are so many examples of this, but I would prefer not to name names.

I need to be clear that I don’t believe that all pink is bad.  And that I do not believe that people who wear pink are bad!  I know you have wonderful intentions and want to help.  But I do believe that if companies and organizations are going to pink brand their product (for breast cancer), then they have a responsibility to use that “pink” and their pink profits responsibly and not as a marketing tool to sell more product or to improve their image.  And that we, as consumers, have a responsibility to read the fine print and be aware of where our money (and how much of it!) is ultimately going when we buy pink products or support a cause.  It is unfortunate that this is necessary when we really just want to help, but the simple fact is that it is necessary if we want to make a difference….

It is my hope that if enough of us do this and if enough of us reject the packaged pink image of what breast cancer is and recognize it for what it really is, we might just be able to make a dent in the number of people suffering and dying from this and other cancers.
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Thank you all so very much for reading, for commenting, and for sharing your important stories…

WOW!!!… And It’s Breast Cancer Awareness Month

Update:  Since I first drafted this in the morning, an overwhelming 26,000+ people have visited my little blog with over 42,000 page views today!!  Though my blog-writing has never been motivated by numbers (as evidenced by my often sporadic posts!), I can’t help but be incredibly appreciative.  When I first set out to tell my cancer story, I thought it would be seen by a handful of readers, at best.  To say that I am humbled by the number of visitors and the number of amazing comments that have come through today would be an understatement.  

I think the realities of breast cancer are often trivialized and “pinkified” so I am sincerely grateful to everyone who has taken the time to visit/read/comment.  I am sorry to say that my story is just one of many.  I’m hoping to pull together a list of these amazing blogs/bloggers soon.

Thank you all for reading — and, of course, thank you to the special people who are always there to “like” or comment on my posts, even when they are few and far between.   I am grateful to you all.

PIC_0589

Imagine my surprise when I logged into my WordPress account last night and saw that over 2,800 visitors stopped into my little blog yesterday.  Now, for someone who’s daily page view number peak was something like 622, this was a bit of a shocker.  I figured it was a mistake.  

But this morning, I saw that it wasn’t.  Naturally, I decided to investigate.  It seems that it is Facebook that is bringing the lion’s share of these visitors to my blog.  And the post that’s bringing them here is one that’s pretty fitting given what time of year it is.

As you’ve probably surmised from the pink ribbons that have popped up in the aisles of your grocery store, it Pinktober a.k.a. Breast Cancer Awareness Month.

I think by now most of you know how I (and a growing number of us) feel about October and the pink displays and endcaps that have appeared in stores across the country.  But I think it’s worth mentioning again.  I won’t rehash my thoughts here, but I encourage you to visit the post that is circulating around Facebook and the Internet.  I wrote it around this time last year on one of two National No Bra Days (there’s a fake one and a real one!) — NATIONAL NO BRA DAY & Breast Cancer Awareness Month (OR Put That Pink Can of Soup Down & Put Your Bra Back On) and then reposted in July (for the ACTUAL no bra day).

Though I don’t think it is that great a post, I AM thrilled that it is being read and I hope it generates thought, discussion, whatever.  Even if it creates a paradigm shift for one person who woke up this morning planning to post a National No Bra Day comment on their Facebook page, or if it makes one person with or without breast cancer feel as though they aren’t alone with their thoughts about how big businesses are profiting from and glorifying this deadly cancer, then I will be thrilled.