Over the weekend, my favorite girl asked me to help her with a project for her biology class. She’s a freshman in high school now. This is what she looked like at age 8 when I was diagnosed with cancer. I took this photo the day before my bilateral mastectomy. This is my favorite girl today.
I know, right??? How does that happen???
Anyhoo, back to the story: my favorite girl is doing a project for her biology class on a disease or disorder that has a chromosomal component. She chose breast cancer.
She needed the basic info of my cancer: stage, treatment, etc., as well as ancillary materials (photos and such) that tell “the story” of her subject’s experience with said disease or disorder. I pulled out my bulging “cancer catch-all” — my binder that holds all my paperwork, like pathology reports. That was easy because it’s all facts: this scan was conducted on this date and found this. Then she asked for the not-so-easy part: details on how my cancer affected me. While there are indeed facts involved with that part too, something else is involved as well, which is what makes it, for me, the not-so-easy part.
Feelings. The dreaded feels.
I don’t like feeling the feels associated with my cancer experience. (I refuse to refer to it as my cancer “journey” because to me that word implies an end point. With cancer, there doesn’t seem to be an end point. I don’t like it, so I’m not gonna use that word.)
Six years out, I don’t think about my cancer experience nearly as much as I used to (hence the loooooooong periods of radio silence from this blog). As with most calamities, time does smooth out the rough edges. But with my favorite girl asking me for all the gory details, that dark period of my life surrounded me, again.
When, exactly, do we “get over” this? At what point does the calamity of cancer lose its potent punch? I’d like an ETA on the return of peace and tranquility. Can someone please tell me when to expect an easing from the powers of the cancer calamity? Because I need to know that at some point, cancer will no longer upend my day like a sucker punch and leave me reeling, wondering why I feel as I’ve been run over by a truck.
That will happen, right?
Even though my cancer experience is no longer the petulant toddler whining for a pack of Skittles in the grocery-store checkout area, apparently that cancer still packs quite a punch. The simple act of flipping through my medical binder to locate information for my girl’s project sent me on a one-way trip through bad memories and scary places. I see myself from a distance, as if I’m watching myself on a screen. In the blink of an eye, I’m no longer a survivor whose scars are a badge of courage. Instead, I’m instantly transported back to that time. Those days. That period.
I hate that cancer has the ability to do this. I hate that cancer still controls me. Like a bad habit or a selfish lover, my cancer has a hold on me. Other people’s cancers have that power over me, too. Like my sweet mama’s cancer. That rat bastard smiles and licks its lips, knowing it is the puppet master and I am the puppet.
I should know better than to expect to be “done” with cancer. After all, I’ve been thinking about it and blogging about it for years. As I wrote early in 2011:
Another things I’ve learned on my “cancer journey” is that someone keeps moving the finish line. I’ve only been at this for 10 months, yet have seen my finish line recede, sidewind, and fade into the distance. It starts even before diagnosis, with the testing that’s done to determine if we do indeed have a problem. Get through those tests, which in my case were a mammogram, an ultrasound or two, and a couple of biopsies. Then there’s the actual diagnosis, and getting through that becomes an emotional obstacle course. Following the diagnosis are lots of research, soul-searching, and decisions. But even when those are through, the real work is only just beginning. After the big decisions come still more testing (MRI, CT scan, PET scan, blood work, another biopsy), and that’s just to get to the point of having surgery. Get through surgery, then through recovery, and just when I think I may be getting “there” I realize that even after recovery, I gotta learn about re-living, which is kinda different when “normal” has flown the coop and there’s a new status quo involved. You might think that finding the new normal would be the end, but guess what? now there’s the maintenance and screening. If you’re the kind of person who makes a list and takes the necessary steps to reach the conclusion, you’re screwed, because there is no end. I can’t even see the goalposts anymore.
I should know damn good and well that there is no end. So why do I keep looking for it?
Lately, much has been written about the rush-to-mastectomy decisions adopted by women with DCIS diagnoses. DCIS (ductal carcinoma in situ) is the diagnosis given when abnormal cells reside in the milk ducts. It is precancerous and noninvasive. It is not life-threatening, although it can lead to an increased risk of developing an invasive cancer. While it is unquestionably scary to receive such a diagnosis, some in the medical community are questioning whether a slash-and-burn reaction to DCIS is appropriate. The current standard of care for DCIS is surgery and radiation. A natural reaction for a woman with DCIS is to undergo the most far-reaching form of treatment available. I won’t argue with that, because no one has the right to judge another person’s reaction to or decisions toward a cancer diagnosis. Anyone who tries to should be punched in the brain. Repeatedly.
That said, data don’t lie, and the case being made for a less-aggressive approach to DCIS is gaining ground. Dr Laura Esserman, a breast surgeon at the University of California, San Francisco, is setting the pace. In a recent New York Times article, Esserman says her goal is “to move the field and do right by our patients.”
Instead of immediately ordering biopsies for women with unsettling findings on their mammograms, Dr Esserman recommends active surveillance. She favors the “wait and see” approach, speaking out about the myriad ways in which a woman is adversely affected by slash-and-burn treatment for cancers that rarely progress beyond DCIS.
Dr Esserman is bringing to light the fact that mammograms — while valuable — find the slow-growing, non-metastasizing cancers that lead to panic more than they find the most lethal forms of breast cancer. She is lobbying for big changes in the early-detection world and has asked the National Cancer Institute to consider dropping the word “carcinoma” from the DCIS label. Instead, Esserman would like for DCIS to be renamed “indolent lesions of epithelial origin.” IDLE would replace DCIS as the way to describe a stage 0 diagnosis. IDLE is catchy and much friendlier than DCIS, if you ask me.
This woman is turning the breast-cancer world on its head, and I like it. In an era of less face-time with doctors, Dr Esserman spends as much time as needed with each patient, often texting or calling them at home. A big part of her “wait and see” approach to DCIS is asking the patients soul-searching questions and utilizing specific testing to gather further evidence before recommending surgery. She’s pushing for more innovation in clinical trials and for fine-tuning the process of screening for breast cancer. In cases for which she does recommend surgery, Dr Esserman counsels and frets like a family member, and even sings to her patients as they undergo anesthesia. Personally, I’d much prefer a serenade to a prayer before I go under the knife. I can imagine her patients, smiling and relaxed, as they enter the last blissful sleep they will enjoy for a while to come.
I love Dr Esserman. I don’t know her, but I love her. I love that she’s crashing through long-standing views and taking the road less traveled. I believe she will enact great change in the landscape of breast cancer. I wonder how I would have reacted to my own breast cancer diagnosis if mine had lacked an invasive tumor. If my cancer was simply DCIS, would I have chosen a different path? I don’t know, but I do know how scary my diagnosis was. I know that the scorched-earth treatment plan was right for me. I had watched my mom die from cancer at age 67. My kids were still in grade school when “the C word” was applied to me. I wanted to be as aggressive as possible, so my choice was to go balls-out against cancer. And it’s a good thing I did, because my “non-affected” breast turned out to be riddled with cancer. Nothing showed up, though, on any of the screenings. Nothing. When Dr Esserman mentioned that mammograms don’t find the more lethal forms of breast cancer, I nodded my head knowingly and actively talked myself off the roof rather than allowing myself to think “what if?” What if I had chosen a single lumpectomy or single mastectomy, and that smattering of cancer cells and Paget disease in my “unaffected” breast had continued to evade detection? Would I be sitting here, typing this post? Would I be glancing up from my computer to see this guy outside my window? What if?
The WEGO HAWMC is quite a mouthful! WEGO Health describes itself as “social media’s most active online health community — Health Activists. These influencers, organizers, connectors, leaders and contributors are passionate about helping others lead healthier lives.” WEGO Health Activists have thrown out a challenge: the HAWMC, or Health Activist Writer’s Month Challenge. It’s a post-a-day challenge taken on by several bloggers I greatly admire. One of them asked if I was planning to participate, so here we are.
I missed Day 1, so will start with Day 2, which is pretty scrambled logic for this Type-A girl, but part of the challenge is thinking — and blogging — outside of our comfort zones so I guess I’m in.
Introduce your condition to other Health Activists. What are 5 things you want them to know about your condition/activism?
“We will open the book. Its pages are blank. We are going to put words on them ourselves. The book is called opportunity and the first chapter is New Year’s Day.” — Edith Lovejoy Pierce
I’m a couple of days late, but the sentiment stands.
Welcome, 2012. I have every hope that this year will be waaaaaaaaay better than the last. 2011 was a humdinger, and not in a good way. 2012 is bound to be better, just by default.
I’m not one for making resolutions as a new year dawns, but I do like to set goals. I’ll leave things like world peace and matching-making for those pathetic Kardashian sisters to a higher power; I’m motivated, but am not a miracle worker. Without further ado, my goals for the coming year, in no apparent order:
drink more champagne (I’m sure some are wondering, is that even possible??)
improve my forehand (more depth and more angles, and quit hitting right to the person on the other side of the net. Sheesh.)
make my own salad dressing (no more Newman’s Own for me, although I want to figure out how to get his face on my bottle of dressing)
take my calcium supplement (every day, no excuses, just do it)
That’s it. A simple list.
Happy New Year!
I was mindlessly folding clean laundry this morning and remembered something from the beginning of my cancer “journey” that was so funny it warrants an encore. From my Caring Bridge journal, the precursor to this little blog, on Friday, May 26, 2010. To set the scene: Macy and I were at the ballpark, walking from the parking lot to the field for one of Payton’s baseball games. I was just shy of the 2-week mark since my bilateral mastectomy, and this was one of my first outings that didn’t involve a doctor’s appointment. My chest was flat as a board, but I didn’t care because the cancer was gone.
As we walked up to the field, Macy said totally out of the blue: “Mom — did they do something to your chi-chis? Because they look all shrunken.” My mind was racing at this point because #1, I have NO idea where this is going, and #2, I thought I’d explained the surgery to my kids. I have yet to find a parenting book or video that guides me through moments like these. So I told her yes, they did do something to my chi-chis: they cut them off! That’s what the surgery was all about. Then she says, “Well, are they going to fix them? Because they’re not looking so good.”
From the mouths of babes.
Remember George Jetson? And his ill-fated stint on the treadmill? And him begging his too-cute-for-him wife to get him off the crazy thing? I know how George feels. I’ve never been a fan of the treadmill in general, much preferring to get my cardio fix outside or slog my miles on the elliptical, but this figurative treadmill I’m on now is the pits. Stop the ride, I want off.
I mentioned that I have a heavy issue on my mind and wasn’t sure what to do about it. Yesterday was intended for settling the issue and making the necessary plans to move forward. Instead, it was a craptastic example how nothing goes as planned or as expected on this damned cancer “journey.” Having just come off a week of antibiotic hell after my latest reconstruction revision, craptastic was the last thing I needed. And yet, in typical cancer “journey” fashion, it’s got to be as complicated as humanly possible.
Yesterday started with a trip to the dermatologist for ye annual mole check, and that visit ended with 2 shaved-off moles being sent off for biopsy and the unceremonial removal of 7 or 8 skin tags. Being a melanoma victim, I’m pretty serious about any weird-looking spots on my skin and don’t hesitate to point out ones that need to be lopped off. Like the Queen of Hearts from Alice in Wonderland, I say “Off with their heads.” I was a walking Band-Aid when she got done with me. Then I headed straight to my next appointment, stop #2 of 3 on the Monday doctors’ tour, which should have been a simple fact-finding trip but ended up being an exercise in frustration and confusion.
Here’s the deal: when I was first diagnosed, way back when in a time that now seems like another lifetime entirely, I knew that at some point I would need to have my ovaries removed. The oophrectomy, in addition to being an outstanding Scrabble word, was a foregone conclusion. Think about it: ovaries produce estrogen and progesterone, both of which provide the fuel for my kind of cancer. Cut off the fuel supply and starve the cancer and eliminate any hope it may have of coming back.
Then the post-mastectomy infection reared its ugly, ugly head, and I wasn’t well enough to undergo another surgery for quite a long time. (Some certain people who read this blog don’t like to see mention of said infection, which I totally get, but it’s kinda vital in the chain of events, so let’s all just suck it up and read on; it was a fluke infection for which no one can be held accountable. File that one under “shit happens.”) Moving on….Then once I was well enough after the infection, I was sick to death of sickness and near-deathness, so the idea of another surgery was most unpalatable to me. I wanted and needed — and deserved, dammit — to get back to “normal” for a bit before going under the knife yet again, so the oophrectomy was postponed. But it remained a constant, a “when” not an “if.”
My stint back to “normal” was short-lived, however, because once I was recovered enough from the mess last summer, it became apparent that we needed to go ahead with reconstruction asap in order to give the now-healed chest wall a vascular system. That poor chest wall had sunk and had been sliced & diced & excised enough times that it needed fresh blood as much as Edward Cullen and his crew does. So the next step in the unscripted and not-nearly-as-exciting-but equally-dramatic-as-Eclipse saga that is my life, we commenced with The Big Dig and relocated blood vessels from my belly to my chest. After a long-ass surgery and a Hades-esque stay in ICU, the blood vessels bloomed in their new home and all was well. With my highly skilled and kick-ass surgeons, the Drs S, The Big Dig was a screaming success and I seemed to be on the right track.
Revision #1 in August and Revision #2 last week were successful as well, thanks to the original Dr S, who never ceases to amaze me with his surgical talent and artistry. That man is pure genius in the OR. Can’t recommend his work highly enough.
Having survived all these surgeries brings me to the here & now, which is the pursuit of the oophrectomy. Yesterday’s visit to the OB-GYN was a fact-finding mission for a surgery that I know in my heart of hearts I should have. Then the OB-GYN throws me a nasty curveball by questioning why I want to do this.
“Want” isn’t the word I would use for my feelings toward the oophrectomy, but I understand that it is elective compared to an appendectomy, say. But no, I don’t want to do it. I need to do it, and I’m being responsible by volunteering for it. But I certainly don’t want to do it.
Almost as much as I don’t want to have my carefully-thought-out plan upended. I listened carefully as the OB-GYN explained the permanence of removing one’s ovaries, the risks of the surgery, and the menopause it brings on. I’m there, I get it. I’m young for breast cancer and for removing my lady parts, but I’m way past childbearing and have been in menopause for the last 18 months, so I am well-versed in the hell that it is.
She spent a lot of time explaining that surgical menopause is abrupt and intense. Instead of the body gradually decreasing the amount of female hormones at its own pace, it’s like an on/off switch. One day you’re normal, the next day you’re in menopause. I’m still not sure what part of my 18 months of chemically-induced menopause she didn’t get, but suffice to say it was like banging one’s head against the proverbial wall. Bang! Bang! Bang!
Some days there’s not enough alcohol in the world to cope with these detours and speed bumps on the cancer “journey.”
(Ooooh, I think I feel a tshirt slogan coming on.)
The mess of the OB-GYN appointment continued when she was finally satisfied that she’d drilled the cons of the surgery into my head enough to examine me. She determined right away that doing the oophrectomy laproscopically (i.e., through my belly button instead of via an incision) won’t work because of the abdominal scar from The Big Dig. She thinks there’s too much scar tissue and the skin on my abdomen is too tight to allow her to maneuver laproscopically. This is one opinion, and a perfect example of why a pro-active patient solicits more than one. Nothing about my ab scar is unusual or unexpected, just makes a laparoscopic procedure trickier.
So the option to not doing the surgery laparoscopically is making another incision. She wants to make another incision, below the existing 17-inch racetrack. Another incision. Now I’m thinking there aren’t enough cuss words to cope with these detours and speed bumps on the cancer “journey.”
(A companion t-shirt, me thinks.)
A most unsatisfying appointment.
There was just enough time for Amy and me to grab lunch before moving on to my next appointment. And yes, by lunch I mean drinks.
My next appointment entailed removing the two sets of stitches from Revision #2, which I expected, instead of removing them with tweezers or little scissors, there was a blade, which I did not expect. The downside to those super-tiny, uber-tidy mucho-skilled plastic surgeon stitches is that they’re a bit harder to remove than conventional, Frankenstein-style stitches. The blade was like an X-acto knife on steroids, and after the day I’d had, it scared me a little bit. But the good doctor held my hand, soothed my jangled nerves, and tut-tutted over me like the kindest of caregivers, and the stitches were no more. You can barely spot where they used to be because the incisions are so small, and the human pincushion lives to see another day.
But what about those ovaries? What to do about those?
The saga continues.
The last week has been rather trying.
Ok, it’s pretty much sucked out loud.
This time last week I was puking like a freshman pledge at a fraternity party, and the fun didn’t stop until I dosed myself with Phenergan and Zofran and conked out for the night. Little did I know that that was a harbinger of what was to come.
The preventative course of antibiotics has quite simply kicked my ass. I’ve never been one to run from a fight, until now. I’m done. I’m out. Let the countdown begin so someone can drag my sorry carcass out of the ring.
I’ve spent the vast majority of this week in my bed. The entire week. This is rather unusual for a busybody like me, but there was no way around it. My body said, enough. I got up for the necessities: sustenance, teeth-brushing, and potty breaks. Oh, and to drive carpool. Gotta go get the kiddies! Yesterday I picked up the kids in my pajamas — a first for me. I know some moms who do that on a regular basis, but I had never once done it, and today may well be a repeat performance. One of the teachers in the pick-up line, an adorable & energetic kindergarten teacher, stuck her head in my car to say hi and giggled at me in my jammies. She said,”Oooh, I want your life.” I looked her straight in the eye and said, “No, you don’t.”
Trust me on that.
Never have I been laid so low by the workings of modern medicine. Not when I had chicken pox in grade school and had to miss the school carnival (a belated thank you to Rick Dodd for bringing me cotton candy from the event). Not when I had mono in middle school and thought I was near death. Not when I got my tonsils out in high school and would have slipped quietly out of this world if someone had just pulled the sheet over my head.
I have never felt this sick.
I seriously considered calling my dear, delightful doctor yesterday to say that I highly suspect the antibiotics are poisoning me.
My whole body hurts. My bones ache. My lower back feels like it’s being pulled in all directions. My eye sockets feel too big. My tummy is in serious turmoil. The back of my mouth feels like something died in it. My tongue feels fuzzy. My brain is switched off yet my head is spinning, and the idea of making a simple decision is overwhelming. Nothing sounds good, nothing tastes good, yet I’m convinced that there’s something out there that will make this all better. Fresh-squeezed orange juice? No. A grilled cheese sandwich with spicy mustard? Sorry. An angel food smoothie with extra antioxidants? Good try, but no. Macaroni & cheese? Hah. Yogurt with lots of blueberries? Puh-leeze.
The only thing that’s gonna help me in this dire case is time. As the sage Boy George once said, “Time, oh give me time.”
Time to heal. Time for the drugs to run their course. Time to patch up my desiccated digestive system. Time to get past this latest round of shittiness.
(I really hope it happens fast, too, because my favorite girl & I have tickets to see Taylor Swift tomorrow.)
It’s time to dig deep, to look to wiser women than myself, and to seek comfort from whatever source in which it may reside. Today it’s Harriet Beecher Stowe who speaks to me, whose words assure me that I can get through this:
“When you get into a tight place and everything goes against you, till it seems as though you could not hang on a minute longer, never give up then, for that is just the place and time that the tide will turn.”