Day 10 of WEGO’s Health Activist Writer’s Month Challenge tells me to post a favorite picture of myself. I don’t generally like pictures of myself because my eyes are huge and spaced far apart (which worked well for Jackie O but for regular people, not so much) and I always look a bit depraved in photos. However, in a rare showing of open-mindedness and willingness to play along, here ya go. In fact, I’m so open-minded and willing today (but only today, so get it while ya can), I’m posting not one but two pics of myself.
This one is my #1 son’s second birthday, in May 2001. We had a party at the neighborhood rec center and all went swimmingly until the mini fire truck we rented for the kids to ride in broke down and the dads who attended the party had to push the truck around the parking lot. Good times.
I chose this pic because at that time in my life, cancer was the farthest thing from my mind. I was much more focused on coordinating my and Trevor’s outfits to match the party theme. In a totally random aside, I found those toile pants I’m sporting in this photo when I cleaned out my closet last weekend, and they still fit. Barely. But I’m calling it a win.
Photo #2 was taken on my 36th birthday, before cancer so rudely interrupted my life. Again, I have the depraved look in my eye, and knowing myself the way I do, I can see an undercurrent of “hurry up and take the damn picture” and “Sweet baby Jesus I hate having my picture taken” but I love, love, love the proud look on Payton’s face as he wraps his arms around the two ladies in his life. My favorite girl has her usual impish look about her, and she was likely wise-cracking as Trevor took the picture.
Day 9 of the Health Activist Writer’s Month Challenge is all about caregivers. Today’s prompt asks me, the patient, to give advice to the caregiver.
I have two pieces of advice. First, take care of yourself so that you can better care for your ailing loved one. It seems simple, but in the midst of all the caregiver’s duties, it’s easy for this to fall to the bottom of the list.
Second, delegate! If you’re overwhelmed, ask for help (says the woman who’d rather open a vein than be dependent on someone else). People in your social circle want to help, and often are at a loss as to how they can help. Whatever task can lighten your load, delegate it. When someone says, “Let me know if you need anything,” speak up!
Day 7 of the WEGO Health Activists Writer’s Month Challenge (HAWMC). Has it really only been one week? Dang, this is harder than I expected. Today’s challenge is much easier than yesterday’s was, though: What’s the most ridiculous thing you’ve heard about health or your condition?
There have been many ridiculous things said and written and passed along about my “condition.” Thanks to Komen, breast cancer is commonly thought of as the “good” cancer, the “pretty” cancer. You know, the one wrapped in a girlie pink ribbon and represented by rosy-cheeked, full-breasted warrior-women crossing the finish line of the race that’s allegedly going to “cure” my “condition.” (In fairness, it’s also thanks to Komen that my “condition” is one I can blog about without shame or fear or offending someone by using the word “breast.” Betty Ford gets credit for that, too. I can like Komen for de-stigmatizing my “condition” but still shake my head at its idiot pinkwashing.)
One of my all-time favorite ridiculous things said about my conditions is “Well, it sucks about the cancer, but at least you get new boobs.”
I didn’t need new boobs. I was just fine with the set I had. The new ones? Notsomuch. Perhaps this ridiculous statement applies to women who fall into the average age of those diagnosed with breast cancer — mid-60s. If I were 20 years older, I may well think, Hmmm, these old girls have served me well, but it wouldn’t hurt to have a little renovation. But I’m not 20 years older, and I don’t think that. What I do think, though is this: I sure miss my old boobs. And this: Is it wrong for me to envy my pink-ribbon sisters who had the “easy” path of mastectomy to tissue expanders to implants, rather than the not-so-easy path of mastectomy to tissue expanders to several fills of said expanders to infection under the right expander to draining both expanders to removing both expanders to hospitalization for 28 days in one summer to multiple surgeries to extract dead tissue to wound specialists and a wound vac to daily home-health nurse visits to clean and dress that wound to an IV pole in my very own home for round-the-clock IV antibiotics to a year’s worth of oral antibiotics to a hellish reconstruction to two (so far) revisions to try to make that hellish reconstruction’s results palatable. Is that wrong?
Another ridiculous thing said about my condition: “Well, you look good.”
Too bad the general public doesn’t have x-ray vision. Not the kind that lets creepy guys peep under women’s clothing (although I do like the idea of a creepy guy having his retinas burned by peeping under my shirt!), but the kind that lets people see what a breast cancer patient looks like on the inside. Not so good. During the hey-dey of the worst of my BC “journey,” I may have slapped on some lip gloss and clawed through my closet for a top that would accommodate the many stages of my chest expansion. I may have smiled and said “I’m good” when asked how I’m doing in the midst of my own personal apocalypse. Maybe I looked good on the outside — a little sun on my cheeks is easy to achieve pretty much year-round in the great state of Texas. Maybe I portrayed a person who was faring well despite having both breasts removed — people do tend to see what they want to see, and I’m the queen of refusing to fly my vulnerability flag. Perhaps people just don’t know what to say. Either way, we cancerchicks may look good on the outside, but we feel like crap on the inside.
But the all-time most ridiculous thing ever said (to me) about my “condition” is this. Here’s the truth: if something as simple as eating a particular fruit or swallowing a particular supplement could cure cancer, it would. Period. End of story. Oncologists around the world would be out of work, infusion rooms and radiation centers would be rented out as party sites, and Big Pharma would go bankrupt.
If you’re tempted to share the latest internet craze for curing cancer with someone who’s actually dealing with cancer, let me quote Sweet Brown, my favorite meme:
Day 6 of the WEGO Health Activist Writer’s Month Challenge nearly made me give up on the daily task of blogging about my “condition.” I don’t like my “condition” and I don’t like the touchy-feely side of dealing with that “condition.” I like to keep my word, though, and I said I would take on this challenge, so here goes.
Today’s prompt: Write a letter to an older you. What lesson do you want to make sure you remember?
Well, with my dilapidated body, blown-out knee, and menopause-induced lunacy, the older version of me scares the hell out of the current version of me, so I’m going to write a letter to the younger version of me.
Dear Younger Me,
Listen up, missy: that college dream of yours to light Madison Avenue on fire with clever advertising campaigns isn’t gonna happen. You don’t like the Big City — too many people and way too many germs. That other dream of writing children’s books isn’t going to happen, either. You do end up reading a whole lot of good ones, though, to a couple of precious kids who look so much like your baby pictures it’s scary.
Your smart mouth will get you into a fair amount of trouble. I’d tell you to be careful, go easy, and use restraint, but we both know you’d flip me the bird and keep right on sassing. I can tell you that eventually you do learn the fine art of holding your tongue, but it will never come easy.
That sweet, loyal, smart, cunning and unmatched yellow dog who grips your college-aged heart will never let go. She will protect you, and then your children, for nearly 15 years. She will guard the entrance to the nursery and sleep under the crib. She will show you her back when you get out your suitcase, because she knows you’re leaving, if only for a few days. Her time on this Earth will grow short but she will stick it out longer than anyone expects because she will insist on seeing you through an even rougher patch: the death of your sweet mama.
Guess what, girlie? Your sweet mama keeps a tight grip on your heart, too. Not a day passes without you feeling the loss, in big ways and small ways. (Note to self: don’t give up on trying to make her pie crust. It won’t ever be like hers, but keep trying.)
Just about the time cancer steals your beloved mama, you’ll start getting an annual mammogram. You’re ahead of the schedule thanks to that mama-stealing cancer, and every year the mammogram will come back funky. Don’t settle for the “dense tissue” rationale. There’s a tumor growing, and it ends up taking up a lot of space, both in your body and in your life.
Look, I know you’re going to be busy living your life and raising those two little kids when the diagnosis comes, but please, brace yourself, because it’s going to get ugly fast. And say a little prayer to the environmental-services gods who control your operating room on the day of your mastectomy; maybe we can avoid that post-mastectomy infection that will reorder your life. And BTW, the bilateral mastectomy was totally the right choice. Good girl for following your gut. There will be no hint, not a single whiff, of cancer in your left breast, but it’s there.
Give up right now on thinking your cancer “journey” will be “one and done.” It will be more circuitous than you can ever imagine, and it will change you in ways you won’t discover until years later. Oh, and before you even begin that circuitous journey, you’re going to have to deal with melanoma on your right foot. I know, who puts sunscreen on their feet, right? Hate to tell ya, that even though you catch it early, the surgery to remove the melanoma will be the most painful thing you will experience. Yes, it’s worse than childbirth and a bilateral mastectomy. Oh yeah, about childbirth–when your water breaks, the baby is coming. Yes, he’s early. No, you haven’t finished the birthing class or packed your bag, but it doesn’t matter. And you’re going to get teased for decades for reading ahead in that “What to Expect” book on the toilet in the middle of the night when your water has broken and your much-better-prepared spouse sleeps peacefully, unaware of your foolishness.
It turns out fine, the baby is healthy (but hard-headed). Even the cancer thing is manageable. Not easy, but manageable. I think we both know you can handle it. You’re going to learn a lot, whether you want to or not. Your limits will be tested. You’re going to make some true and life-long friends along the way. You’re going to unload friends, too, in one of many hard-learned lessons. You see, there are people who are willing to give what they want to give, not what you need. This is a very important distinction. Trust me, you’re much happier without ’em. A couple more pieces of advice: first, don’t ignore that knee pain while you’re running. Stretch before and after you pound the pavement. Listen to your body. Pain is its way of saying something is wrong. Ice your knee after each run. I know it’s a hassle, but so is living with constant pain. Years down the road, you’re going to be embarrassed by how you hobble down the stairs like a woman twice your age. You’re going to be frustrated by the ways in which your body fails you. I don’t have an answer for how to deal with that, because I haven’t figured out how to deal with that. I do recommend drinking champagne as often as you can. I don’t have to tell you to never, ever pass up an opportunity to drink some bubbly. The lesson I want you to remember is that the sound of that popping cork will soothe your soul, every time.
Day 5 of the WEGO Health Activists Writer’s Month Challenge: “If I could do anything as a Health Activist…”
Since it’s my dream, I’m claiming two superpowers. In addition to kicking cancer’s ass, I would eliminate all the stupid/inane/insensitive/uncaring/clumsy/offensive things people say to those of us in cancerland. Yeah, yeah; I know sometimes people mean well and just don’t know what to say, but that’s no excuse. No cancer patient needs to hear a comment like this, or certainly not this, no matter how well-intentioned the awkward speaker should be.
Today’s mission in the Health Activist Writer’s Month Challenge: Create a “care page” – a list of your best resources that someone who is newly diagnosed could go to when starting to advocate for themselves or a loved one.
Consult the mainstays such as Breast Cancer Action, and Think Before You Pink, and Dr Susan Love Research Foundation, and breastcancer.org, and The Rose. Consulting “Dr Google” once a diagnosis has sunk in is something most people do.
Follow a blog that appeals to you. Whatever flavor you prefer — spiritual, snarky, research-oriented, or off-the-cuff like this little blog — there’s a blog out there to meet your needs. Among these blogs, you’ll find posts such as this and posts such as this with practical advice from those who’ve been there. Much of this information is rather like on-the-job training; you don’t know what you need to know until you need to know it. Take the hard-won wisdom from those who have walked this walk before you.
My best piece of advice, in a sea of good advice, though is this: Do what you believe in your heart of hearts is best for you. Whether a prophylactic bilateral mastectomy instead of a lumpectomy, whether undergoing reconstruction or flaunting the flat & fabulous look, or whether pursuing a second or a third or a fourth opinion. Follow your instincts and listen to your gut.