Today, I passed on my wig and a bundle of gifty items to a friend who will embark this week on chemotherapy for breast cancer. I do not know if my almost-40-year-old pal will use the wig because she has already chosen one that makes her look like a young college kid. But I do hope that she can use the goodies I packaged together for her in a brown paper gift bag. I selected each item for its significance in the chemo game: A REAL SIMPLE magazine for passing her minutes in the infusion room, a bottle of water as a reminder to hydrate, some Club crackers to soothe a maybe-queasy tummy, cozy socks because they were my favorite chemo gift, a small journal and pen so that she can jot down notes and questions and concerns, and a bling-y little bell she can ring for assistance when she least wants to exert herself. I wish I could give her total peace of mind that she will be OK and that this will be her one and only encounter with a life-threatening disease. But I cannot even give myself that gift; I can give her presents, though. And I can tell her that I am confident she will crush this stupid cancer. Because I do believe she will.
It has been almost TEN YEARS since I stood with a malignant tumor in my left breast and watched my sleeping 3-year-old in his big-boy bed and my sleeping 18-month-old in his comfy crib and tried like mad to crush the panic in my gut that told me I may not see these beautiful beings grow up. And now, tonight, the 6-footer kid, who is dangerously close to 14 years old, is out on the town with a bunch of boys and a few girls and no adult supervision (except during chaperoned trips to and from destinations, which include the movie theater and a local high school football game). His first night without grown-ups orchestrating and helicoptering his every move. That kind of scares me. It also makes me super happy.
I am in awe of this kid who is growing up in front of me, despite cancer’s threat. It is a true joy to watch him take baby steps into the world. He is mature, confident, kind, social, and funny. I am sure he will sometimes stumble along his path to independence because that is just normal, but I mostly expect he will smoothly transition into a life that does not involve constant parenting. I will miss him, like I do tonight, and that leaves a little hole in my heart. That hole, however, is filled with the knowledge that he is one of my greatest accomplishments, and I am honored that I get to witness him spread his wings and fly. It also helps that his 11-year-old brother still plans to live with me forever, maybe even with his wife. I am so not ready to wrap my head around his first night out.
This is me. On paper. In black and white. Defined by numbers. Like 1.1 (size of my breast cancer tumor in centimeters), 1 (stage of my disease), 4 (number of lymph nodes removed), 12 (number of Herception infusions I received), 93 (percentage that predicted my survival for 5 years). The numbers go on and on.
There were enough numbers to cover the floor and tables of the space where I spoke this morning to two small groups of Univesity of Florida medical school applicants. The purpose of my talk was to bring to life my numbers, to demonstrate that for each digit strewn across the place, there is a story. Like 18, which represents the months I spent in counseling trying to wrangle the tears that continually poured from my eyes and anxieties about living to see my baby boys grow up. And 2, which is the sum of my individual hospital stays that lasted for 10 total days. I talked about the first low blood counts (700) that landed me on the bone marrow floor (because the oncology floor was full) and earned me a blood transfusion, the second low blood counts (1200) that recovered much more quickly and without donor assistance, and the 4 infusions of chemotherapy that robbed me of my hair but gave me 10 extra pounds.
I also shared some happy stories. Like how my blog reaches 80-plus countries, how my wig has traveled across the United States 4 times so that other women could benefit from the comfort it gave me, how I now have a 0 chance of recurrence because my cancer only returns in the first 5 years, and how I will have survived for 10 years in November. I was 34 when I was diagnosed. Now, I am 44. My kids, then 3 and 18 months old, are now 13 and 11.
I do love numbers. They fascinate me. But they do not reveal sadness, suffering, pain, hope, joy, relief. Patients are so much more than the numbers that fill their charts, and my message to today’s applicants was this: Find a way to personally connect with those you will treat. The connection does not need to be long or lasting; it just must be meaningful.
If these applicants attend the University of Florida for medical school, they would be wise to model the manner of Dr. Lynch (pictured right)—my warm and loving oncologist and friend—who continues to invite me to speak during interview days because he thinks it is critical for prospective students to learn about real-life medical journeys so that they can become compassionate patient-centered physicians. I think he is right.
After my chat, one applicant shook my hand and tenderly said, “I will definitely think about things differently now. Thank you.”
I need nothing more to confirm that my message matters.
But I managed to survive baldness for the few months it lasted because I found a wig that kind of tricked people into thinking I had not lost my hair. It was that super-fantastic. My mission while enduring breast cancer was to look and feel as normal as possible. At times, it was hard to pull off. But my wig helped. A LOT.
NOW, this is not an advertisement for the company that sold me the best camouflage ever, but I do highly recommend underhair (a halo hair wig worn under any hat, cap, or scarf) for anyone who is as freaked out by hair loss as I was.
OK, quiz time:
There are so many milestone days on a cancer journey—diagnosis day, surgery day, start-of-treatment day, end-of-treatment day, and so on. Diagnosis day (November 24) is a biggie for me, but surgery day is pretty powerful, too, because it is the day cancer was officially NOT in my body. That day (NINE years ago) is tomorrow, December 3. What I love about these 2 days is how close together they are. My cancer was removed 9 days after I found it. I am grateful for that. EVERY day.
My oncologist invited me to share my breast cancer story with University of Florida medical school applicants. Today, I shared. It was grand. But better than speaking was watching Dr. Lynch present to the group a mini-lecture about breast cancer. He almost made me want to BE a med student. Almost. Thank you, doctor, for (1) saving my life, (2) staying in touch and including me in your world, and (3) inspiring me.
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.
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.