Funny how life happens. My favorite oncologist in the whole wide world asked me today if I would share my breast cancer story on Friday morning with a group of medical school applicants. Just 2 days after Friday, on November 24, it will have been exactly 9 years since a surgeon called me at home to say, “unfortunately, cancerous cells were found.” What perfect timing to recall the horror of diagnosis, the terror of treatment, and all the happy moments that have scattered themselves along my journey with a dreaded disease.
I probably look lifeless and depressed in my race photo from the Pink Pumpkin Pedal-Off 40-mile bike ride because, well, I was. I still look a little bit like this (minus the helmet) as a result of ongoing and not-quite-yet diagnosed health issues. But I did have a super-great time on this trek with my Just Ride team. I mean, I would have loved the mapped route to have been 40 miles (as advertised) and not 37 miles because a few of us who trained for FORTY MILES wanted to ride FORTY MILES and were disappointed when the mileage fell short. That’s OK, we added 3 miles so we could claim a true victory. Still, the event was lovely. Wait, actually, lunch was all gobbled up when we arrived at the finish line, so that was not grand, but perhaps the Mexican grub would have still been available had we followed the rules and stopped pedaling at 37. Seriously, and I mean it—a great time. We pushed ourselves physically, we chatted, we laughed, we nursed the fallen, and we decided that we could have conquered the 62.5-mile route (which was probably more like 59.2 miles). Next year, I am pretty sure we will go the extra 20. Next year, I am pretty sure I will have a smile on my face.
Yesterday, I posted this on Facebook:
In the spirit of sharing the bad along with the good (because rumor has it that Facebook tends to spotlight the perfect lives of perfect people), I want you to know that I spent much of my morning creating a spreadsheet chronicling nearly TWO AND A HALF YEARS of undiagnosed tummy troubles so I can present dates and tests and results to ANOTHER doctor tomorrow in hopes of turning up answers regarding the misery I feel in my gut. I have no idea what I should eat, I have no motivation for exercise due to discomfort, I am gaining weight, and I am nearing full-blown depression (if you talk to my mom and John, you may learn that I have already arrived). Still, I will continue trudging along this mysterious path. Someone MUST be able to help me. For now, I think it will be the person who gives me a pedicure at 1:00 p.m. (Oh, and although I can share this snippet of doom and gloom in writing, I will probably cry if you ask me about it. Just a warning.)
Then, I saw a new doctor, and this is what happened:
I met with a new primary doc who had the great vantage point of looking in the Shands system at ALL of my medical history. She saw every test and every result and every opinion of every doctor I have seen during the past 2.5 years, and as the doctor reviewing it all, she concluded that I have had more extensive testing than the average person with abdominal issues. There is only one test left to order, and she has ordered it—I will get a CT scan of my abdomen and pelvis. If this does not turn up anything conclusive, her belief is that I have irritable bowel syndrome (IBS), which is a disorder of exclusion, meaning that when everything else is ruled out, this is often what is left. She cannot rule out completely that chemo and radiation screwed up my insides, and if they did, well, then the damage is done, and I must live with it.
IBS is managed well by some people with fiber, so I will up my intake. It is also managed by identifying and minimizing triggers; some folks are triggered by certain foods, but I have been tested out the ying-yang for food allergies, and I have none. My trigger is most likely stress (yay to all the smart people who predicted this!). When I learn to minimize stress and/or manage well the stress that confronts me, I should feel better. I will start taking (again) an antidepressant to help me cope, I will keep eating a Paleo diet of small-portioned meals and exercising regularly, and most important, I MUST clear my plate of excess. I have too much going on, and I will work on limiting my responsibilities and increasing my attempts at relaxation. (Oh, I will also give up some blood for testing to see if anything is problematic with my thyroid, vitamin D levels, etc.)
I feel good about today’s appointment, and I feel super thankful for all the loving people in my life who have invested so much time and energy into supporting me through my physical and mental breakdowns. You have noooo idea how much your words have helped. Or maybe you do if you have ever been in a similar predicament and felt a wave of love wash over you. It is amazing.
Today, I posted this on Facebook:
A psychologist walked around a room while teaching stress management to an audience. As she raised a glass of water, everyone expected they’d be asked the “half empty or half full” question. Instead, with a smile on her face, she inquired: “How heavy is this glass of water?”
Answers called out ranged from 8 oz. to 20 oz.
She replied, “The absolute weight doesn’t matter. It depends on how long I hold it. If I hold it for a minute, it’s not a problem. If I hold it for an hour, I’ll have an ache in my arm. If I hold it for a day, my arm will feel numb and paralyzed. In each case, the weight of the glass doesn’t change, but the longer I hold it, the heavier it becomes.”
She continued, “The stresses and worries in life are like that glass of water. Think about them for a while and nothing happens. Think about them a bit longer and they begin to hurt. And if you think about them all day long, you will feel paralyzed—incapable of doing anything.”
Remember to put the glass down.
My new motto: Put the glass down.
Thank you, Meg.
I love my new bracelet!
If YOU love my new bracelet and want to shop a variety of designs, visit the Pinky Doodle Designs Facebook page. While you are browsing, check out the other lovely gifty items. Personalized tub—my favorite!
Perhaps we don’t know definitively what causes breast cancer, but there are certain risk factors that have been established. Today, I learned that about 30% of breast cancer cases are linked to excess body fat. I also learned that being overweight increases chances of poor long-term health following breast cancer remission and that overweight breast cancer survivors are at higher risk for heart disease, Type 2 diabetes, and other chronic diseases. If you ever wonder why I am a little bit obsessed with exercising and eating right, this is why. I am not sure why breast cancer got me the first time, but I am determined to not give it a reason to come back and steal my hair again.
This weekend, I cheated on Paleo. I ate some dark-chocolate-covered pomegranates (is that even technically a cheat?), a few French fries off the restaurant plates of little boys, and a sampling of graham crackers at a backyard bonfire (no marshmallows or Hershey’s chocolate, darn it—just the graham crackers).
Many health advocates advise an 80/20 approach to
deprivation clean eating, and some recommend allowing entire cheat days (gosh, that sounds fun!). For nearly a year, however, I have pretty much eaten 100% Paleo. Sure, I have lost balance a few times, but mostly, I have consumed lean meats, fruits, veggies, sweet potatoes, nuts (but not peanuts), eggs, almond butter, and coconut oil. My only real decadence has been homemade Paleo banana bread with dairy-free, nut-free, soy-free chocolate chips. I have been dedicated and strict because tummy troubles plagued me for a really long time, and I am convinced that my streamlined way of eating makes me feel better.
But I am human, and I long for treats, and, sadly, I think I can’t have them—like, ever—because after I stumbled off the wagon this weekend, I felt physically and mentally crummy. I still feel a tad bit crappy, actually. (Hey, it takes time to come off of a dark-chocolate-covered-pomegranate-French-fry-graham-cracker bender.) So now, I am practicing patience, which is so not easy for me. I am deep breathing and wishing away the rubber tire I feel wrapped around my middle. I am waiting for my pants to loosen to the point of comfort. I am sticking with my exercise routine even though I feel blah. And I am trying, trying, trying to be OK with the fact that I may never again cave to my cravings—or I will, and my body will revolt, and I will write this post all over again.
1. I do not want to feel this crummy again.
2. I do not want to write this post again.
This is the time of year I start looking back and marveling at how I once thought good health was a guarantee. Nine Septembers ago, I believed I was invincible—and then November rolled around, cancer struck, and I ended up looking like this (see photo, left). Moral of the story: None of us is immune to illness, but all of us are capable of comebacks (see photo, right).
This morning, I wrote on Facebook, “I feel ho-hum about my mammogram today. The one I had after my own discovery of a lump did not reveal the mass (ultrasound did, though), so even great news at 2:00 p.m. will not mean there is nothing there. Still, fingers crossed for non-suspicious findings.”
My tune has changed a bit, because I had a 3D mammogram, and, apparently, it offers images that are way better than 2D, and had this sort of peek at my breast been available back when the lump was there, the thing may have been detected. So, I do not feel so ho-hum anymore. I feel pretty darn relieved that nothing (nothing!) suspicious was found.
Best part of the visit:
The blue gown.
Definitely the blue gown.
Last year, my oncologist told me my cancer is not coming back.
Really, she did.
Apparently, my aggressive type of tumor only recurs in the first 5 years after diagnosis. Since mine did not come back in that span of time, it is not going to come back. Like, pretty much ever.
Now, I can still get cancer, just like anyone can get the disease; I just will not have a recurrence of my first one.
Today, my doctor told me that not only is my cancer not coming back, but I am not coming back to her office anymore, either. After 8.5 years of cancer care, I am released. There is just no reason for anyone to follow me anymore. A primary-care physician is all I need.
No more cancer.
No more cancer doctors.
This news comes 7 days before I turn 43. Man, I love early birthday gifts.
I will spare you an in-focus, close-up photo of what’s happening to my face—this blurry depiction of the red, raw, and swollen result of light treatment for pre-malignant lesions is scary enough, don’t you think?
This really, really, really hurts. I should have guessed it would. My sensitive and way-reactive skin has a history—the Tegaderm tape used to bandage my breast and underarm post-lumpectomy melted into my skin, the latex Band-Aid that covered my basal cell skin cancer surgery site burned a border around the wound, and sunscreen pretty much always causes me major irritation. My skin responds violently to everything, like yesterday’s aminolevulinic acid topical solution. The stuff was applied to my entire face, I sat for 45 minutes while it absorbed, and I spent 15 minutes under tanning-bed-like lights, which activated the whole process of killing pre-cancer. It’s a process for which I am thankful—this approach should wipe out all invaders at one time and prevent the repeated freezing of spots that creep up over time. But man, this is no fun, and the discomfort of my throbbing, stinging face is forcing a homebound day of rest. I hate that—I can’t run, I can’t tackle my to-do list, and I can’t drive my kids to and from their activities, because the sun beams in at me from all directions and causes prickly pain that is almost unbearable.
This too shall pass, according to the medical assistant I called this morning after I woke up to a face on fire and a mouth that is puffy and pulled in a plastic-surgery sorta way. Some people just react more strongly than others, she said, but relief should arrive sometime in the next 24 hours.
Twenty-four hours. I’m banking on it.
It has been 8 years, and I still can’t bring myself to wear my chemo curls for more than a few minutes. I spent much of my life with perfectly straight hair, then chemo took it all away and gave me curls. This madness is just so BIG and FLUFFY and PUFFY, and I just can’t seem to embrace it. Yet.
I was curled up in the fetal position on my kitchen floor in March 2005 when my mom arrived to take me to a genetic counseling appointment to find out whether my breast cancer was caused by a mutation somewhere in my body. I had just completed my fourth dose of chemotherapy, and the cumulative effect of 2 months worth of toxic drugs was wiping out my 34-year-old immune system. I could barely walk or talk, and I am not really sure how my mom shuffled me that day into the car, into the oncology clinic for a blood draw, and into the office of my genetic counselor, who tried to interview me about family history while I struggled to not pass out and while the lab folks examined my blood counts.
My white blood cell count was low. It should have fallen somewhere between 4,000 and 10,000, but it was 700, and that earned me a mask and a swift trip to the hospital, where I was admitted and treated for 5 days. My mom sat with me during the mornings and afternoons, then she relieved my husband from kid care so he could hang with me at night. She did the whole rotation again a few weeks later, when my system crashed for a second and final time.
My mom did a whole lot more than hospital duty during my battle with cancer. She raced to my house the day my doctor called me at home to say, “Unfortunately, cancer cells were found.” She held my hand before a surgeon removed the lump I had found while washing in the shower, was by my side the moment I opened my eyes post-surgery, and nursed me back from a violent skin reaction to the tape that bandaged my parts. My mom joined me for every chemotherapy infusion, watched my little boys for 35 days so I could report for radiation treatments, told me I was beautiful when I hated my bald head and bloated body, and while I know she must have quietly cried about my predicament, she was nothing but a positive force during my journey with a deadly disease I have now survived for 8 years.
My mom, whose house is just a few miles away from mine (lucky me!), is a survivor herself. As a young, divorced, working woman, she raised two daughters on a shoestring budget and without child support. Times were tough, but my sister and I have nothing but cheerful childhood memories, and I am pretty sure our mom’s grit is what has helped us conquer challenging life circumstances. The girl has crushed a major liver disease (she had 95% of her liver removed 12 years ago), she has overcome nasty sports-related injuries, and she has rebounded from two hospitalizations for serious medical scares. Still, my 65-year-old mom is as strong as ever. She is yoga rock star, she walks miles and miles every day, and she can crank out push-ups like a pro. My mom is also a superstar grandmother to her four grandkids, and 2 years ago, my then-fourth-grader wrote an essay titled, “My Nana Rocks.”
She is “strong like a lion,” Joey wrote. “Once, I jogged down to her house, and she was relaxing outside in her favorite Gator chair. When I stepped onto her driveway, I challenged her to do 20 push-ups. She said, ‘Bring it on!’ She got down in her push-up position, and I said, ‘Ready, Set, Go!’ She smiled at me and did 10 push-ups in 5 seconds. I was astonished. Then, before I knew it, she was done. She did 20 push-ups in 10 seconds. I gave her a high-five, and I saw her biceps pumping, so that told me she was really fit and strong.”
See, she is good at push-ups!
And so much more.
Nine-year-old Danny said to me while I was tucking him into bed tonight, “I can’t imagine you bald.” That is because he was 18 months old when chemotherapy took my hair, and he has absolutely no memory of my cancer. I love that.
In the spirit of International Women’s Day, I honor those who courageously rise and bravely fight cancer — women who are diagnosed with a deadly disease and are put through the rigors of grueling, poisonous, and far-reaching treatment plans that sometimes do not work. Some days, I am bummed I am one of these women, but for most of my moments, I am proud to be part of a group of badass warriors, whose strength inspires me stay strong, focused, and hell-bent on surviving this stupid disease.
My Just Hope geocache is now officially listed on the Geocaching.com website, and, already, it’s been found. This morning, I received notification that a geocacher located my treasure. This person signed the online logbook, “FTF. Thanks for keeping us all aware of this tragic disease.” (FTF means first to find.)
If you are the person who located Just Hope, congrats on the find. And welcome to My Breast Cancer Blog!
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.
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.
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 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.