Following Up on Followups
My first followup pap smear two weeks ago was unexpectedly anxiety-inducing. I couldn’t figure out why I wanted to cry as we approached the UCSF cancer center, or why this little voice in my head whined, “I don’t want to BE here” as we sat in the waiting room.
It wasn’t until we were back home after the 14-hour day that I realized this was the first time I’d been to that center and didn’t know what the outcome was going to be. Every other time we took the familiar route to Divasadero Street, I’d already had cancer—we were just making a plan to get rid of it. This time, I was back to that unknown state. The scariest state.
My gyn onc took a biopsy of some tissue she noticed. She said it looked like scar tissue, but wanted to take the sample because we live so far away and weren’t scheduled to see her again for three months. It’s funny, but I’m way more in tune with my body now.
“Is it up and to your left?” I called down to her from my perch on the exam table.
“Yep,” she answered as she snipped a bit of tissue.
I knew exactly what she was talking about. Wish I’d had that ability when a tumor was growing in there, but hey, what’reyougonnado, right?
After all that, the news is amazing. The best news. Biopsy came back clear, as did my pap smear. I have another three months and then will go back in June for a second followup. I have a feeling it won’t be as anxiety-inducing the next time around. By the fourth it’ll probably be old hat. By the eighth, I’ll be past that magical date when most cervical cancers recur.
But I won’t count down those dates now. Instead, I’ll just enjoy the little milestones that are getting me back to “good.” Working full time hours and not needing to take an extra day off for rest. Enjoying my magnificent display of apple blossoms cut fresh from the backyard. Having friends over for John’s incredible pho.
Not letting cancer or the memory thereof rule my day-to-day life. It’s a struggle still, but I know in time I’ll be strong enough to move on.
“The Last Time You Were Truly Happy.”
I wrote all day long yesterday. It felt incredible. Most of my entries, like Anne Lamott says, were shitty first drafts. But I’m really pleased with my response to the “Tell Me About the Last Time You Were Truly Happy” writing prompt. So I’m sharing it here:
These first few months of 2013 are the happiest I have ever been. I live in a house with my husband. I know, from three years of observing my incredible Mother in Law, what I want my house to look like. How to keep it uncluttered. Organized. Looking the way I want it to.
I have real, true, unfettered “me time.” I sit around in my pajamas all day on Saturday and Sunday. I read silly, thoughtful, gossipy articles on the Internet. I write for hours on end. I do whatever I please.
I create bouquets and place them in places that will bring me infinite joy each time I walk by. Our hallway is alive with sprays of lilies. The entryway with a stately purple orchid, serenely bowed.
On these days alone, I listen to the music I want to listen to. At the volume with which I want to hear it. Sometimes it’s loud. And it shoots right through to my soul. And I dance around my living room, perfecting my Breakfast-Club-era Molly Ringwald. And I sing along. And I get out of breath. Sometimes I slip on my socked feet, But that’s ok.
When JLP’s at work, I watch dumb movies. With nobody to question why I might be interested in yet another Matthew McConaughey bromance. I eat four pieces of cinnamon toast in a row.
I do not have cancer. I do not work four jobs. When I sit on the couch with my husband, there is not so much information flooding my brain that I can’t enjoy the moment. I no longer make miles-long to-do lists in my head. I give thanks (sometimes silently, sometimes audibly) for this moment. When we can hold hands on the couch and our smelly old cat can sleep, drool pooling at his upturned lip, snuggled in between us.
I have a husband who adores me. Who isn’t afraid of this post-cancer body, that I might be broken, that I may have progressed without him in some sort of cancer-caused journey of introspection. He pleads with me to do less. To heal. To not worry so much about a spotless bathroom. I agree. And I actually stop worrying about it. I let those fucking winds of heaven blow through us like we’re a couple of slices of commodity Swiss cheese. I accept each moment for what it is. I unabashedly ask for more time, for someone to repeat something I might not catch right away.
I’m ok with the distance from my friends, knowing that we can all check in at any time with each other and pick up right where we left off. I have no fear that anyone is angry with me. That there is any misunderstanding between me and another that may be creating conflict in our lives.
I am in love with life. I am in love with every day that starts with a fresh promise and a warm cup of Ethiopian coffee. I can’t remember a time I woke up every morning excited to brew a fresh cup of coffee. But with every single cup, I’m reminded that today is a new day. Anything is possible. I no longer make those big, convoluted plans that I have to carry through at all costs. I might do the laundry today, or I might do it tomorrow.
And who’s going to judge me? The Overachieving Women’s Club? Guess what, they wish they could do the same. They just haven’t had the reason to let those inner judges go yet.
I have, and it’s the most incredible feeling. I am so happy.
The Upside to Pelvic & Abdominal Radiation?
Keeping my girlish figure. Recovery is making my intestines incredibly sensitive, resulting in a little more awareness of what I take in. All those comfort foods that are supposed to be “treats?” Yeah, those happened a little more often than I was realizing (especially the booze). Here’s a fun list of extreme edibles and potent potables that were staples pre-cancer and are now once-in-a-while goodies. Not because I’m actively trying to be healthier, mind you, but because my body can’t handle them:
Burritos. Bourbon. Sausage & Peppers. Nachos. Red Wine. Champagne (MOST SORELY MISSED). Mac N Cheese. Lattes. Milk. Steak. Anything With Red Sauce. Anything With Cream Sauce. Pastries. Diet Coke. Salsa. Raw Fruits. Raw Veggies.
So, you know, thanks A LOT, cancer, for making me eat healthier. I can think of easier ways to go on a diet!
The Spoon Theory
Can there be anything more frustrating for an overachiever than for her brain and body be completely out of sync? To feel so worn down that a weekend isn’t enough to recover from a full week’s worth of work? To no longer have the luxury of a “fake it til you make it” attitude while out in public then collapsing on the couch when nobody’s looking?
This “new normal” is really cramping my style (Literally. I haven’t worn anything other than yoga pants ALL WEEK). I am currently sitting on my front porch, Day Four of a week of sick leave laid out before me (this is where I insert a little gratitude prayer for being able to sit on my front porch in beautiful weather). I didn’t want to take it, but JLP insisted and my work family agreed. I don’t like it, but I’ll take it. In fact, I needed it. My body’s stoked. My brain’s always the last one to figure it out.
I find myself online a bit more when I’m home, though I promise JLP I’ll lay off so he doesn’t come home to an Internet Zombie. But in my Tumblr perusing I found a link to The Spoon Theory, an eloquent characterization of what patients with chronic illness face each day before they even decide to get out of bed.
By no means do I want to take away from those who suffer this every day, who don’t have the point on the horizon to look forward to when their body might have fully recovered from whatever trauma was needed to beat cancer in its bitch face. But today, as I recover from my five-block walk to the cafe and back because I’ve let myself run out of coffee at home, I find that this theory very much describes my new normal, even five months out from my last treatment. I don’t like it (I’d much prefer to be saving the world or conquering something, even if it’s just my taxes), but I’ll take it. For now.
So Much Drama in the WBC…
Kidding. Not that much drama. Though I did pop in to see my med onc (chemo doctor) on Wednesday for a followup. I hadn’t seen him in months.
That guy. He’s kind of a wackadoo. One of those who likes to hear himself talk about the strangest things! I talked about him a bit here, when we first met him, about his ventures into very macabre stories. This visit’s tale was incredibly disturbing and not relative to my question about recurrence at all. Yeesh.
This visit, I asked him to check out my right ear. I’d visited the GP onsite at JLP’s work in December when I thought I had an ear infection, and though I really just had a drainage issue, that doctor thought he saw a piece of metal in the other ear, right behind the ear drum! My med onc confirmed he too saw a piece of what looks to be shiny aluminum back there and suggested I see an ear, nose and throat specialist so they can remove it with a special tool. What the… ?!
On Saturday I received my bloodwork results in the mail. I was just going to wait and see if they called me, but I’ve been getting sort of a “well you’re done with cancer treatment now so you’re not as important” vibe from all of my doctors really (I swear I’m not making it up. I can see why some patients don’t really bother with followups after a while), so I called in the next day to ask about my results. The nurse said “I think they’re OK, I mean, the doctor signed off on them and didn’t give any specific instructions… do you want me to mail them to you?” Yeah fine sure.
Anywho, it was kind of a shock to see that a lot of my counts are still really low. My WBC (white blood cell count), is only 2.8, which is just lower than normal (4) and not that much higher than when I first finished chemo (2.4). This is definitely a fatigue factor. A couple of other counts are higher or lower than normal, and are typically signs that your body is fighting off something. There’s improvement over the bloodwork I received on my last day of chemo, but I’m by no means back to normal levels.
It was a real eye opener to me that my body’s not quite up to snuff. I recognize that I’m tired and am learning to find the balance between normally overachieving Mandy and “oooh let’s binge watch the first season of Damages all day” Mandy (um, how rad is Rose Byrne’s hair?). But those numbers don’t lie, so it was a slight validation that what I’m feeling isn’t anything other than normal recovery (I’ll admit it, fears that my days on the couch and lack of a desire to socialize are signs of a spiraling into depression and not just normal recovery sometimes keep me from enjoying my days on the couch). Thank goodness for understanding bosses and my superhero, JLP!
Note to Self:
When curious whether your post-treatment body might be ready to reintroduce some of the things you love but had to give up during treatment, maybe try them separately, just in case the answer is a firm NO.
Spin class OR raw tomatoes, for example.
…she writes from bed, where she’s spending the rest of the day in a tiny bit of agony.
A Very Merry Christmas, Indeed
I have known, for nearly 10 days now, the results of my followup PET scan — THE scan that tells us whether the 30 days of external radiation, five chemotherapy injections and four internal radiation treatments effectively eradicated those pesky cancer cells that were wreaking havoc on my cervix and uterus, as well as my iliac and para-aortic lymph nodes.
The verdict? A resounding annihilation. No trace anywhere. Not in my pelvic region, not in my lymph nodes, not in any part of my body where a PET scan might pick up clusters of cells behaving badly. I have triumphantly kicked cancer in its bitch face!
Our journey certainly isn’t over, but I have a feeling the worst of it is. The next two years will include a series of quarterly pap smears, beginning March 2013. Apparently there is debate on whether to be scanned again, but my doctors recommended yearly scans just to keep an eye on it. So that’s what we’ll do.
Our future quarterly San Francisco visits will be bundled into “weekends” that just happen to include a doctor’s appointment. I refuse to let a pelvic exam (shocker included) be the major event of our trips to the great City by the Bay, when there are so many great culinary experiences to be had!
I think, because I’ve known for so long and have had a chance to digest the news, this post is probably lacking the life-affirming exuberance I’ve felt over the last couple of weeks. I don’t know how else to explain it, other than a very deep, ingrained feeling that I’ve been given the opportunity to live my life with greater purpose, with less abandon, to say “yes” to any opportunity and to not fear the unknown—not THE unknown, though, yes, I am a lot less afraid of that. But I am certainly less afraid of getting or being hurt, of embarrassing myself, of trying something because the outcome might be less than stellar.
This awareness has been the best Christmas gift I could possibly hope for. I have a feeling 2013 will be our best year yet. Cheers to our friends, family and community who have been a part of this journey right along with us. Thank you for the hope and strength that helped me power through. Here’s to an even more kickass 2013.
In a swift and bittersweet move, I tendered my resignation today with the agritourism nonprofit I freelance marketed / managed for the last three years. I get a bit emotional when I think about it; I’ve really poured my heart and soul into this group of farmers and vintners and consider many of them family. We’ve come so far since I began: a fresh new website, a sold-out annual event, and a group decision to begin hosting year-round mini tours.
They say cancer makes you see things in a different light, and this choice to leave is proof positive of that. I want success for this group so much that I’d rather they take the next leap without me. They really need someone who freelances for a living and doesn’t try to squeeze in press releases, emails, meeting minutes and phone calls in the two hours before work, on her lunch break and two hours after work. Or maybe they need someone who can do all that and I just can’t anymore. At any rate, I have to admit to myself and the group that if I attempted to continue the way I used to, with this new post-cancer body and mind, we’d all crash and burn… and I’d hate to be the cause of that.
I’m not gonna lie, we will miss that extra cash; but a wise woman once told me, “the money will come.” And somehow, I believe it. I can focus on my one job and can use my free time to…oh I don’t know, continue to recover, exercise when I can and nap when I need to. I’m sad to let this gig go, because it’s ever so dear to my heart, but I’m proud of myself for recognizing the need to bow out for the group’s and my family’s benefit. And hey, nothing’s forever, right?
Rest and Activity
I’m not sure when it was, exactly, during my epic hour-long leaf raking that I realized this was the most exercise-induced sweating I’ve experienced since my diagnosis. Not complaining, though; I feel great!