Today, I am 43.
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.
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!
This is the kind of greatness I encounter because of this blog.
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.
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.
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 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.
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.
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.