my Breast Cancer blog

2004, age 34 — this is my story

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Just Hope Hidden in the Woods

Just Hope is hidden here.

I know it appears that I live in the freezing wilderness of some northern state. I do not. I live in Florida. I just happen to get cold very easily, so my coat, scarf, and gloves come out when the temperature drops to what I deem chilly. Today, the 50s were chilly, so I bundled up on our trek into the woods, so my boys and their cousins could hide my just-assembled geocache.

Joey and cousin Tori hide the Just Hope geocache.

My family is new to geocaching — a free real-world outdoor treasure hunt that allows players to locate hidden containers, called geocaches, using a smartphone or GPS. We’ve been out maybe four times, and already, we love it. That’s why I decided to fashion my own box of goodies, which, of course, is breast-cancer themed. The contents of my Just Hope geocache include cancerspot.org stickers, a logbook and pencils, some trinkets for sharing, and a note that reads as follows:

Congratulations—we “hoped” you’d find this cache, and you did! Way to go.

OK, here’s the deal on this one: The mom in our family was diagnosed with breast cancer at the age of 34 back in 2004. She is still surviving (yay!), and she has been blogging about it ever since the start of her horrible yet wonderful journey (yes, there have been some good moments along they way). We hope you’ll take a sticker and visit her blog—leave a comment if you do to let her know you stopped by—and our wish is that you will find there some speck of hope or inspiration.

Until we hear from you, be well—and happy continued geocaching!

Oh, please sign our logbook, too, and if you leave a trinket, feel free to take one!

Just Hope has been submitted to Geocaching.com, and when it is approved as a worthy geocache, it will be featured on an online map so that treasure hunters can track it down. If you happen to be one of those hunters, we “just hope” you find it.

Cancer-Survivor Spectrum — Where Do You Fall?

I know a guy. He was recently diagnosed with testicular cancer. He had surgery, and radiation, and he is now cancer-free. He is not sure he identifies with being a cancer survivor, though, and I think he should.

“It’s weird when I think about or talk about my cancer story, because I don’t really feel like there is much of one,” he shared with me. “I almost feel a bit guilty talking about it. So many people have or had it so much worse than I did. Not that any cancer story should be eventful, but mine was very uneventful in my mind. Something felt unusual, I had a couple of tests done, a week later, I had it removed, and I went through some light radiation to better my odds of it not coming back. That’s pretty much how it went. I feel like calling myself a survivor is going overboard, compared to what others have gone through.”

I totally get what he’s saying, and I think we all judge where we fall on the survivor spectrum. My journey was a challenge for me personally, but others have it worse, and some people must live on treatment in order to just buy time. I often feel guilty that I have survived for 8 years, and some people never get that gift. The bottom line, though, is that we all long to be cured, and I believe my friend should be so completely thrilled that his cancer was caught and terminated. Also, the feelings that come with having cancer are pretty universal, I think; there is fear and worry and hope and a whole bunch of roller-coaster emotions that happen regardless of the type of cancer or the prognosis. My point: My friend is a survivor, for sure. He is just luckier than some, that’s all.

Where do you fall on the cancer-survivor spectrum—and how do you feel about your position compared to the position of others?

I Love What Happened Today

I think I want a new job — I want to be a professional guest speaker. I had so much fun today sharing my breast cancer story with a bunch of University of Florida medical students (if you guys are reading this, I thank you sincerely for being such an attentive and responsive audience!) that I want to do it again and again. Think there’s good money in such an endeavor? Probably not. Still, I’m willing to suck it up and talk anyway.

Here’s what was so great about today: Before I stepped behind the podium in the large classroom with the tiered desks and seats, I got to listen to Dr. Merry-Jennifer Markham lecture about cancer survivorship, and she was gooood, and her points segued perfectly into what I had to say. She didn’t know it would happen that way, and I didn’t know it would happen that way, but our two presentations meshed beautifully. For example, she talked about how it’s not uncommon for cancer survivors to get skin cancer, and when it was my turn to talk, I pointed to the ugly scar on my arm where my basal cell cancer was removed. She discussed the value of psychotherapy and antidepressants during cancer treatment, and I revealed that both were part of my line-up. She discussed chemo brain. I think I had that. I can’t remember. It’s like we had discussed our plan for talking to these students, but we never did—it just happened that our messages were similar, and it was lovely.

I also love that I learned some new bits of information from Dr. Markham (holy cow, women have a 1 in 3 chance of getting cancer [any cancer] in their lifetimes, and men have a 1 in 2 chance), I love the little microphone I got to clip to my shirt, I love the questions a few students asked me after the class ended, I love that the traffic on this blog has totally ramped up in the last few hours (there are lots and lots of Gainesville visitors, and I suspect many of them are the students to whom I spoke), and the free valet parking wasn’t bad, either.

I love what happened today.

Operation Booby Cache — Calling All Comments

We are newbies at geocaching, but we’re inspired to do more than find hidden outdoor treasures; we want to fashion our own cache, and we’ve already chosen our theme — breast cancer awareness. Of course.

Our box will look something like this (no pink!), and we are trying to determine what exactly we will place inside, besides the basics, like logbook and pen. We’d love your ideas — think awareness and inspiration, and tell us what compelling contents should fill the waterproof space (well, not fill exactly, but we’d like a few trinkets to send a message). We can even include takeaway items so that those who locate our stash can pocket a goodie or two.

OK — ready, set, share!

Ready to Share My Story, My Hair

My favorite wig will join me on February 13 when I talk to a group of second-year medical students at the University of Florida. My task is to share my breast cancer story with these students, who are learning the basics in an oncology course, and then to answer their questions. I am also taking along a Ziploc bag filled with the three ponytails I chopped off before shaving my head pre-chemo, some magazines that contain my published cancer articles, and some notes to narrow down my 8-year-old journey into easy-to-understand tidbits that fit into something like 20 minutes. I’m ready. So is my hair.

Sometimes, I Get Prizes

There are all sorts of greats about blogging — like reaching people who need breast cancer information and inspiration, connecting with amazing folks I would have never met had I not launched this space on the Internet 8 years ago, and journaling my story for my own therapeutic benefit — but one of the neatest perks of penning my details is scoring goodies.

Recently, I was asked by the crew over at Scarves Dot Net (SDN) to answer some interview questions for the SDN Spotlight. And I did. (I’ll point you in the direction of the piece once it publishes.) And after I submitted my responses to eight questions, my lovely contact person invited me to pick a scarf to serve as a gift for my contribution to the SDN blog. I picked this striped orange number, and I can’t wait to throw it around my neck in some fashionable display. Fortunately, SDN features a nifty guide to 50+ knots, so I can make sure I look the part of a stylish girl, even though I’m really not all that spiffy.

I’m telling you this happy little story because I am way thrilled about my new prize, but also to recommend that you pick up your own scarf or two — for you, for friends and family, for teachers, for a cancer survivor who needs a little color in her life. And, of course, I say go for the striped orange number. Just because I love mine.

Thank you, SDN, for sharing my story and for your kind and generous gift.

My Parts Are Perfect

Apparently, my parts are perfect — well, except for the few organs that have caused my pelvic floor dysfunction (but are not allegedly the culprits in my overall tummy turmoil). All else, though — flawless. Everything in the view of both endoscopy and colonoscopy were clean and clear, MRI revealed my pancreas and nearby organs to be healthy, tests of my blood showed no food allergies, blah, blah, blah, and today’s sonogram of my female stuff identified no abnormalities. “Perfect,” said the tech who did the test. I have a follow-up Thursday with the doctor, who maybe will see something the tech did not, but it’s looking like there just isn’t anything medically wrong with me. There is the IUD that came out last Wednesday — it’s my only remaining hope for explanation, and, interestingly, my stomach has felt great ever since it was removed. Now, in the past, I’ve gone spans of time feeling well, only to later have a horrendous episode, but wouldn’t it be so glorious if removing that darn copper thing was the trick? Ah, yes, it would be.

I Don’t Care If You Know

I don’t care if you know about my breast reduction (34DDD > 34C), the two giant babies I pushed out of my body, my breast cancer, my tummy tuck (did I mention the two giant babies?), my stomach ailments, my pelvic floor dysfunction (did I mention the two giant babies?), or anything else that may seem highly personal and private. I don’t care because I’m an oversharer, and I spill my most intimate details because I just know there is someone out there looking for folks who have traveled similar roads, and I am happy, eager even, to share my roadmap, however choppy and confusing it may be. That’s why I’m here to share the latest in my medical saga.

Tummy troubles have plagued me for more than 1 year. I’ve been poked, prodded, scoped, doped, you name it, and nothing (NOTHING) has been presented to me as a cause for my discomfort, which two nights ago had me in such physical distress I was sure something in my body would explode while I slept (it didn’t, and I actually feel pretty well today). My next step comes Tuesday, when I report for a sonogram of my belly. My OB/GYN ordered the test on Wednesday, after he removed my copper IUD (my only option for quality, non-hormonal, post-breast-cancer birth control) just in case the foreign object, which has been in place for 8 years, is causing my woes. I guess he’ll be looking via sonogram for fibroid tumors, ovarian cysts, something that looks just not right. If he finds nothing (his prediction since he likely would have discovered anything significant during internal exam), I’ll give the no-IUD scenario about a month; if that doesn’t help, then I honestly don’t know where I’ll turn. Well, I’ll turn to some sort of (maybe permanent) birth control, but the stomach stuff — no idea. I will surely keep you in the loop, though, because I don’t care if you know. Actually, I want you to know, just in case it does some good for you or someone in your life.

Note: Although my Paleo eating has not eased the gut pain (I was so hoping it would), I am sticking with this healthy diet because it makes me feel better overall, and I just love knowing that there is not one speck of processed anything in my body.

Thrilled to Watch Him Grow

Who is 5 feet 6 inches tall and 122 pounds? My just-turned-12-year-old child. He is 1 inch shorter and 12 pounds lighter than me. If he follows the same fast track he’s been on since birth, he should be about 6 feet 5 (give or take an inch) as a full-grown dude. That sorta scares me. It also kinda thrills me that I get to see this kid almost pass me by because when he was 3, and I had breast cancer, I wasn’t sure I’d see it happen.

Cancer Creeps In

Danny does not love to read. He complies if we boss him into it, but he rarely takes the initiative to pick up a book and dive into a great story. He does like to read with me, though, and, so, I have made it my mission to help him get lost in the written word.

Today, we read aloud on the front porch (John secretly snapped this pic) from our own copies of the same book, and this is how it went: Danny read one chapter, I read three chapters (they are short), Danny read another chapter, I read two more, and so on. This back and forth is what keeps him engaged, and the joy for me is that I get to listen to my 9-year-old boy read aloud, which is magical; I love how he uses his voice to narrate the pages, how he reacts to suspense, how he asks me questions to clarify what’s happening. The book we’re currently reading — The Tiger Rising — is filled with powerful messages that are such super teaching topics, and I am thankful for the dedicated time with Danny to discuss what author Kate DiCamillo covers in her gripping paperback; there is bullying, sorrow, anger, friendship, loss, even cancer.

It was Danny’s turn to read when the word cancer appeared in Chapter 16.

“How did your mother die?” she asked suddenly.

Rob sighed. He knew there was no point in trying not to answer. “Cancer,” he said.

Danny shot a look my way, and our eyes locked. Cancer. The word always inspires a reaction in our family. I am sure it always will.

We stopped reading shortly after the cancer mention. Danny’s attention had worn thin, and he was ready for dinner. Tomorrow starts his school Read-a-Thon, though, so we will hit our books again before long. I can’t wait to learn more about Rob and the caged tiger he has been hired to feed, the tiger Rob’s friend Sistine wants to set free because it’s not nice to keep animals in cages. I hope Danny can’t wait, too.

$8 to Help Crush Cancer

It’s been years since I’ve done any cancer-cause fundraising — I collected so many thousands of dollars over the course of a few Making Strides Against Breast Cancer seasons that I thought it was only fair to give my family and friends a break from forking over funds on my behalf. But now, I am back, and I’m requesting that you donate a one-time, small contribution of $8 to the American Cancer Society’s Relay for Life.

Why $8? Because I have survived cancer for 8 years, and that’s $1 per year of survival, and it’s a fairly small amount to contribute, and if a bunch of people donate, this could really add up.

Why Relay for Life? Because Joey’s middle school has a team, and I want to support the OVMS Panthers as they do their part to help crush cancer. Plus, Sharon Sailor, a very sweet friend of mine who has known Joey since he was a  little Pre-K guy, is heading up the team, and that really makes me want to back this worthy endeavor.

So, if you are in the position to share 8 of your dollars (they are tax deductible, by the way), just head on over Sharon’s page, click on Donate, and complete all required fields. Then, accept my sincere thank you for your kindness, and don’t forget that every one of your pennies counts toward saving lives that may otherwise be lost to cancer.

Here’s the Thing

The thing about all these breast cancer women I know is that many of us have never met in person. We have connected mostly through mutual friends, blogs, and Facebook, and together, we share our stories, raise awareness, spread hope, swap wigs, and find mentors for each other. We share a common bond that makes personal contact unnecessary, and when someone in our community passes away, the sadness runs deep, and the reminder that none of us is immune to death really stings. Tomorrow, I am confident, will be a better day.

Letter to a Little Girl

I just wrote a letter to a 9-year-old little girl who will begin year-long chemotherapy for a brain tumor that could not be completely removed via surgery. I am sending her (along with the letter) a pair of comfy, cozy, fuzzy socks because they helped me when I was sick. Suddenly, though, my illness at age 34 does not seem as important as hers at age 9. And also, why must today deliver such sad news?

The Last Word

I had the last word today during a visit with 20-some University of Florida medical school applicants. They were gathered on campus to complete a day-long interview process, structured to give them a glimpse of a day in the life of a med student, and on the agenda was me — a real, live patient.

I told my 8-year-long story from beginning to end in about 20 minutes (whew!) in a freezing-cold room in the basement of Shands Hospital (I was actually shivering at times), and my favorite oncologist, who serves as the assistant dean for the College of Medicine Admissions, said it went very well. I think it did, too.

It was my job to deliver the last word to the folks sitting with me in a circle formation, the individuals who will likely one day be charged with the responsibility of delivering health care to sick people. “Practice medicine with sensitivity,” I told them. “Even if you must fake it,” I said, “show some compassion because it can make a huge difference.”

Then, I read from a hand-written note that was mailed to me by the surgeon who performed the needle biopsy on my suspicious left-breast mass. He’s the one who called me at home the day before Thanksgiving 2004 to inform me that “unfortunately, cancer cells were found.” His note read:

Dear Jacki,

Just a brief note to let you know that I regret being the messenger of bad news, but know that you will come through this difficult time healthy & strong. I & my staff wish for you a smooth & speedy recovery.

Dr. Mac

That note mattered. It made me feel less like a statistic and more like a cared-for individual. That note still matters; that’s why I keep it at close reach, so I can forever remember that there are doctors who really do care.

Sensitivity.

That was my last word.

I’m Perfect — At Not Being Perfect

My mom recalls with such clarity my elementary school teachers sharing with her how one itty-bitty mistake in my universe sent me into an I-must-start-over-again tailspin. Imperfect handwriting was not OK, coloring outside the lines was not good enough, and if my ponytails and braids were lopsided, I was inconsolable. Perfection is what I sought. Always.

Danny is nothing like me—when he showed me how he accidentally smeared the marker drawing on the cover of his fourth-grade writer’s journal, he said, “I’m just pretending that it’s water dripping down the front.” What a healthy response to a minor error. What did I see when I spotted the goof, which was topped with bubbled-up sticky laminating wrap? I saw imperfection. I wanted to re-do that project. And fast. But I didn’t. It wasn’t my problem to fix. It wasn’t a problem at all, in fact.

Perfectionism is not all bad. I suspect it’s the character trait that allows me to stick with exercise routines, clean diets, organized schedules, and healthy routines. It’s not all good, either, though, and honestly, I know deep down that it’s mostly detrimental to my well-being. I’ve long been aware of this, and through cancer-related therapy and anti-depressant treatment, I achieved some success curbing my pursuit of all-the-time greatness.

Then I became an editor.

What was I thinking?

Writer and editor Laura Hale Brockway says, “As an editor, the kick in the head is that no matter how hard I try—proofreading backward and forward, fact checking, checking sources, etc.—simple, preventable errors still occur.”

I know. I know. And it’s killing me.

I chose a career I love—one that kinda, sorta, pretty much requires perfection. Clients hire me to fix what they’ve missed. If I don’t catch their flubs, then I’m not really doing my job. Or so goes the story in my head.

What I must learn is that I am doing my job. And I’m good at it. I’ve been told by those who pay me to proofread that I’ve exceeded their expectations, I’ve helped them score good grades, I’ve taught them so much about the written word. Still, that missing comma or extra quotation mark, discovered long after I’ve delivered a project back to its owner, haunts me.

Perfect is an impossible goal. I am human, and humans make mistakes; therefore, I am set up to fail with every task I tackle. Sure, there may be times when I achieve 100%, but can I keep up that gig for all of time? Not a chance.

Brockway cites Joseph T. Hallinan, author of the book “Why We Make Mistakes,” who reports that humans have design flaws that set us up for mistakes. We are efficient, but also error prone. We are just wired that way, and the sooner I get over my hang-ups about getting everything right all the time, the smoother I will sail through life. Am I capable of such an undertaking? I’m really not sure.

According to the experts at the University Of Illinois At Urbana-Champaign’s Counseling Center, I should experiment with my standards for success. “Choose any activity and instead of aiming for 100 percent, try for 90 percent, 80 percent, or even 60 percent success,” they say. “This will help you to realize that the world does not end when you are not perfect.”

Yea, I realize the world will not come to a screeching halt just because I stumble when I intend to soar. My concern is that maybe editing is not what I should be doing in this world. The pressure to perform at such a high standard is just so consuming.

I don’t intend to make any big career moves at this very moment. I’m just soul searching, trying to find peace in my body so that I can enjoy more happy and less haunt.

And you do know that I’ve proofed this story about a zillion times in hopes of catching all of my blunders, right? Did I leave some behind? I’m sure I did. But I’m moving on. Really, I am.

I Wrote a Letter

That video “Parenthood” character Kristina made for her kids — I did that. Well, I wrote a letter; it was essentially a goodbye message written when I was sure I would not survive cancer. I wrote to John, too. My boys never received their letters. Thank goodness!