I remember when I finally found the ONE cervical cancer blog on the Internet when I was diagnosed. It’d been five years since she was diagnosed, so her posts went from everyday updates to quarterly updates, to once every six months, to once a year. And I thought, “I wish I knew what her life was like in between those six-month checkups,” and wondered why she didn’t update more often. Now I kind of get it.
I think you reach a point where you just want to get on with your life - not let cancer define you. It was such an upheaval, this all-consuming six months of my life, but now I kinda want to move on. Be regular ol’ Mandy, just with a shorter cervix, no ovaries, and a less-than-stellar memory. Plus,this was my cancer blog, so do I keep it up and not talk about cancer? Make it my personal blog? Or do I let it languish between checkups and start something else, less cancer-related? I’m not sure.
At any rate, my last 3-month checkup was Wednesday. Just a pelvic exam, no pap smear. She’s going to start alternating those. Everything looked great! I put everything out on the table: my ladybizness dryness, recent wooziness/blurry vision/nausea. I don’t reeeeeally like having to explain to the new resident (we have a new one EVERY time, who goes over everything with us before we actually see the oncologist) things like WHY those symptoms can’t mean pregnancy. It’s not a big deal, but I find myself thinking ahead to what she’ll explain to the doc and tailoring my info thusly.
The wooziness/blurry vision/nausea concerned her, even though they scanned my head in June. She recommended I see a local doc right away to rule out a sinus infection, as well as an eye doctor just to rule that out. I made a local doc appointment the next day and it turned out I have the flu. I’m supposed to lay off my two staples, booze and sugar (I kid, I kid. I also consider coffee a staple).
For the first time in the year since treatment, I finally acquiesced to hormonal cream. She said it’ll help with the dryness and also possibly my moods. I’d been trying to stick with yoga / meditation for the latter, but I wasn’t doing that either, so I’ve been this shy of miserable for the last 3 months or so.
Nothing big, just a little… down. Off. A bit antisocial. Hermitty, even. I haven’t visited our good friends and their precious baby who was born in AUGUST. I didn’t even respond to any birthday well-wishes on my facebook wall! I’ve been making the weirdest, not-like-me mistakes at work. I can’t remember what toilet paper we like when I’m shopping and the indecision is almost crippling. WHAT IS WRONG WITH ME?!
Maybe this ridiculously expensive estrogen cream will help. We shall see! I’ll let you know in February (KIDDING).
So I jumped out of a plane with the Red Bull Air Force last month… the kicker? I never would have done it pre-cancer! Read more about my day of daredeviling and my new, post-cancer thoughts on facing your fears.
Test came back all clear! One more clear followup in the books.
Physical therapy is going well; it took some trial and error, and a re-injuring of my adductor muscle (now known to be the culprit that sent me into that tailspin of recurrence fears) to understand that my tissues & muscles in my pelvic area need some very gentle reconditioning, as opposed to the deep stretching they learned to love after years and years of ballet and yoga.
It’s hard to refrain from something you’ve done practically your entire life, especially because the stretch itself doesn’t cause pain; it’s the aftermath. The recovery. Those muscles are just not ready. So we take it very slowly, I do some exercises on a foam roller every night, use strategically placed ice packs at night and refrain from going on hikes or runs or any other strenuous activity that might stretch that ligament that connects my inner thigh and pubic bone.
Again, baby steps. New normal. Ah well, if it means I’m not back in the chemo ward or radiation room, it’s cool.
Apparently it’s been three months since my last howyoudoin' with my gyn onc, so we packed up early Tuesday morning and headed to the city of fog in time to be 30 minutes late to my 10 AM appointment. Which worked out fine because she was running an hour behind. We both apologized for being late when she walked into the room.
We did the customary interview: any changes, any weird bleeding, how’s your appetite, how’s your sex life.
To which I answered yes, no, GREAT, also great.
The changes: I am MOODY. About once a month, but that timing may just be coincidental. The biggest culprit? We got a puppy right before the 4th of July. He is too adorable for words. He is, unabashedly, the answer to my nurturing needs that I swore I wouldn’t acknowledge because I am bigger and more logical than that, goddammit. But in reality for a very long time I’ve wanted a big, goofy boy puppy to love me from his tiniest days and grow to be a big, goofy boy dog who will sit on my feet and try to lay on my lap when he’s 80 pounds.
But he’s a puppy. A tiny (well, at first), teething, barking ball of black lab / German shorthair pointer that wakes us up early every morning and doesn’t stop until he goes to bed at night. Plus, work for both of us has been a teeny bit overwhelming. So we’re tired. Underfed. Overboozed. And that makes me cranky.
I’m supposed to bring these things up because they might be signs of hormonal fluctuations since I am, in fact, menopausal. But the more we talked it out, the more I realized that I was just tired, I’d given up on yoga or meditation and had basically bundled all physical exertion to running around with the puppy in the backyard (we can’t venture out yet until he finished up his vaccines), and that I probably just needed to make some routine adjustments.
"I feel like, maybe my anger is situational, and because I’m so tired, I can’t gain control like I used to," I said, trying not cry the way I do when I talk about FEELINGS.
My oncologist and her resident commended me on my insight. “I’d probably just say, ‘my husband’s being a jerk!’” the resident said with a laugh.
My onc brought it all into perspective.
"This has been a hell of a year for you," she said. "And really? You’ve handled it better than 99% of any of our other patients. So we can visit hormone replacement therapy if you want, but you might just want to keep watch on these feelings and keep them in a bit of perspective."
At least, I think that’s what she said. I sort of stopped listening after I heard that I’ve handled cancer better than 99% of her patients. The overachiever never stops. I’m even competitive with cancer.
Then we got the exam out of the way (shocker included, obvs), and she promised results within a week. She said based on the way things look there shouldn’t be anything to worry about. I feel like my old scar tissue might be gone, too, because I don’t feel it when she pokes around in there. (Also? EARMUFFS, MOMS AND GRANDMAS: Sex has been really, really amazing. It’s so much better when there’s no tumor in the way!)
Also, I mentioned the pain I still have in my pelvis area. Not as much as before, but almost like a bone pain. She said though this pain isn’t one of the side effects mentioned in any literature, she’s seen it enough in her patients to know that it’s common but might not go away. I found a Pilates studio where we live who specializes in physical therapy, so she referred me to them and I start twice a week on Thursday. I’m pretty excited about that, actually.
Afterward, we stopped in Berkeley for lunch and really had a fabulous time, eating incredible Mexican food, stopping in at the Pasta Shop, and capping it off at a cute little chocolate shop, where I had the best lavender hot chocolate I’ve ever had.
In a couple weeks, I’ll see my chemo dr. for my six-month followup with him, then I’m scheduled to head back to SF in November. Pretty soon, I feel like 2012 will just be a memory that sparks about a week before my checkups. Cancer isn’t really on my brain that much anymore; I’m too tired and overwhelmed with puppy hiccups. I’d say that’s a pretty cool place to be.
*Saw the doc. She didn’t see anything. Recommended a PET scan, just to be sure she didn’t miss anything (was confident it was NOTHING).
*Told myself the scan was just routine, an easy way to meet my deductible.
*Proceeded to freak out for weeks leading up to the scan that my cancer was recurring.
*Still had/have pain in hips and back, afraid to do anything physical, have not worked out since April 28 (unless you count walking the few blocks to the co-op for a loaf of bread and bottle of Le Freak from Green Flash).
*One-year Cancerversary passed almost two weeks ago. Was on the road for work. Decided not trip out too much about it.
*Scan was on Monday. Results came back yesterday. All clear. No cancer. Some radiation damage, which may be causing the pain. Will be referred to a physical therapist to figure out WHAT IS GOING ON WITH MY PAIN.
*Walking the Survivors Lap at the Relay for Life this weekend with JLP’s work team. Kinda weirded out about it. Is it kind of pageant-like? Has anyone else done it? Details, please!
*Totes just glossed over the fact that my cancer is not recurring. MY CANCER IS NOT RECURRING! WOOOOOOOO!
An Update from the Internet Hypocrisy Department...
When I was eyeballs-deep in cancerland last year, I had an epiphany: I’d start a foundation! Geared toward young women of the Internet age who flock to message boards and WebMD when they notice weird things, the Pappenstance Foundation would exist to get those ladies off their computers and in to see a doctor. We’re all so different, with varied ways of explaining our issues, and the plights we experience “down there” are not outwardly visible, so really the smart thing to do would be to exit those rabbit holes of armchair gynos and get in to see the real-life thing, right? (Getting the foundation started is still on my to-do list, so please don’t anyone steal it, ok?)
But I have to report that for the last three weeks, I’ve suffered from Internet hypocrisy. I’ve had some… issues. Some pains, some pings, some flurries… just weird things going on with my body. So, I um… I flocked to the Internet. I’ve googled some things. I’ve read some message boards and even weighed in on a couple of discussions that pertain to me. I haven’t gone so far as to list my symptoms on a message board and ask if anyone has felt the same, but I might as well have.
My justification? I think I’m so tired of going to see doctors and am so worried about being a hypochondriac that I just wanted to make sure I could rule anything out before I made the call. On Tuesday, the pain in my pelvis, hip flexors and thighs was so bad that I finally emailed my list of symptoms to my gyn onc. I apologized for bothering her. I made sure she knew I didn’t want to be a nuisance or sound like a worrywart. I ended the email with, “I’d hate for all of this to be combination of diet / kickboxing injury and waste your time, but I’d come in if you wanted me to.”
I’m not 100% stoked that she wants to see me and possibly move up my PET scan. Deep down, I wanted her to say, ‘why not keep track of your diet for a week and see if anything changes,’ or, ‘how about if I refer you to a physical therapist and we keep your regular appointment in June?’ Which is silly, because the right thing for her to do is to see me and rule anything out.
I made the first available appointment she had, which is next Tuesday at 9 AM. Not because I’m worried, really, but because that’s less time I’ll be giving myself to go online and scare myself with what ifs. I know better, and yet I can’t keep away. Somebody should start a foundation or something…
Thank you, sincerely, for helping me get over my aversion to pooping in public. The often unexpected urgency you have bestowed upon me in the most public of places, including but not limited to Target, cafes and my office, has necessitated my very quick acceptance that I can - and must - broaden my Number 2 Network to outside the home. I don’t think I could’ve done it without you.
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.
“I promise you, I do NOT think this is cancer.”—My gyn onc, as she took a biopsy of some tissue during my first followup pap yesterday. It’s probably just scar tissue, but she figured since we’d driven all that way, and we wouldn’t see her again for three months, it would be prudent to take the tissue sample.
Because they are often so bizarre, my dreams rarely directly correlate to what’s going on in my waking life. I usually have to sit with them for a couple days and delve into what my subconscious is trying to make out. The recurring driving-at-night-but-unable-to-see dream, for example. Or the dream that has me on the highway or another busy road, feet or hands pumping furiously while I kneel or lay stomach-first on a skateboard—wholly believing this is my preferred mode of transportation—while cars zoom all around me.
(These are manifestations of my feelings of not being in control, obvs. Took me a while, but I figured it out.)
Twice, however, I’ve had cancer nightmares that are SO vivid, that really all my brain is telling me is that we are scared shitless. I alluded to the first one a while ago, which happened right before my infamous vagina tattooing appointment. Nightmares of doctors coming at me with long needles (even if it was in a Civil War era sick tent) don’t take much figuring out.
The second one was last night, just two days before my very first followup pap smear. I’m now in the observation phase of recovery, where they’ll test me every three months to see if any cells have begun to go rogue again. I’ve not thought much about it, other than the sometimes disaffected reminder that pap smears didn’t catch my cancer the first time around, so I have waning faith that even if it were to recur, these expensive trips to San Francisco will actually find it in time.
So last night’s dream had me at the appointment, getting a scan instead of a pap smear (for reasons I can’t remember). The tech was very matter of fact. “You have a 1.5cm tumor, deeper in your body than what a pap smear would’ve found… closer to your back,” she told me.
"But that can’t be," I told her. "We got it all with the treatment!"
"Obviously, you didn’t," she said. Then she recommended I cancel the pap smear scheduled for the next day.
Clearly, though I haven’t really expressed it in real time, I am afraid of recurrence. There is a nagging fear, choosing to raise its head when I’m asleep, that there were individual, non-clustered cancer cells tooling around my body at the time of the “all-clear!” PET scan that have now bonded together to attempt their assault on my body again.
I don’t like putting it into words, because I’m supposed to be stronger than that, putting positivity out there, believing that I beat cancer in its stupid bitch face and am now on my way to “normal.” But I guess since cancer was able to silently breed inside me for god knows how long, I can’t shake the fear that it can happen again. It just takes my sleeping self to admit it.
Somedays, for seemly no reason, it hits me like a wall that I actually had cancer. Sometimes it feels like this weird not-dream.. I know I did 6 months of chemo, lost all my hair, and fought with all the rest of it and whatnot, but sometimes it feels like it didn’t happen to me. Does this happen to anyone else from time to time?
All the time. Also, since it took up most of last year, I have a hard time remembering it’s 2013.
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.
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!
Hi! Love your blog and story. I am a 2x cancer survivor, uterine and a tumor on my kidney. I am compiling an anthology titled "Awakening the Hero Within: Stories from the Cancer Tribe". The cancer tribe is both people like us and our loved ones. I hope to empower people to see that cancer can be a great teacher. It literally woke me up to my being a hero to me, and to my loved ones. Would you consider contributing a story, or blog post to this book?
Hello! I’d be honored! Love the idea and the name. :)
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.
Once again, @Suleikajaouad has mined my thoughts for her latest NY Times “Well” blog. KIDDING.
But really, sexual health during and post-cancer treatment is crucial, but not often discussed. I wouldn’t consider myself “lucky,” really, but it is a fact that my type of cancer puts the discussion of our sex life front and center at every followup. Even then, it’s not so much a “hey how’s your sex life,” but a “hey, you’re making sure the scar tissue from radiation isn’t closing up your lady parts, right?”
“Accept, then act. Whatever the present moment contains, accept it as if you had chosen it. Always work with it, not against it. Make it your friend and ally, not your enemy. This will miraculously transform your whole life.”—Eckhart Tolle (via samsaranmusing)
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!
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 dayin a tiny bit of agony.
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?
Chemo brain is real! I would literally not remember what I did the day before and completely lost the ability to plan anything (even a simple meal) during the last couple of months of chemo, and for about a month afterwards. I would forget even talking to people sometimes. It was horrible for someone who plans everything and remembers everything to not be able to do these things.
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!
I have had no shortage of lectures from loved ones lately, telling me I’m doing too much and to just “do nothing” when I’m not working. The weird thing is? Up until yesterday, I thought that was exactly what I was doing. I couldn’t possibly think of doing anything less than I already was.
This week marks my fourth week back at work, just part time at 20 hours per week. It really is all I can handle, which is a bit frustrating. When I get home just after 1 pm, I nosh a bit and usually try to delve into my personal to-do list, which is very often a page long and can include everything from doing the dishes to submitting my disability paperwork. I can normally count on marking one thing off my list, maybe two, then I must lie down and wait for JLP to come home and make dinner. Saturdays are my self-appointed housecleaning days, wherein I attempt to do ALL OF THE CLEANING in one day and collapse, exhausted but accomplished, in front of the TV mid-afternoon / early evening.
Of course, this schedule was all fine and dandy until our social calendar got a little out of control. Two weeks ago, our social engagements really did me in. Monday night was a double date with friends at a local pizza joint. Nothing fancy, but a later night than usual. Tuesday was election night, and we stayed up all the way until the president’s speech. Wednesday night was a wrap meeting for my freelance marketing gig; I just wanted to congratulate everyone on a huge success (the wine was flowing and the meeting went a tad longer than I’d anticipated). Thursday was an early night in, but Friday my girlfriend came over and watched three (THREE!) scary movies with me. We had a fabulous time as always and completely lost track of the time. Saturday was an epic 5-course beer pairing dinner at the brewery where JLP works; I knew I was not my usual self as I watched half-full samplers of beer pile up around my place setting while everyone else struggled to make theirs last until the next course.
You see where this is going, right? No time in there to recharge my batteries? It gets worse. Last week, I trudged right through my week as if that week before was just a regular routine of 20-hour workweeks, single-item list checkoffs and 7:30 PM bedtimes. I never really admitted to myself that such an epic week of social butterflying could have such harsh consequences — truly, at the time, I had all the energy required to do so much. I totally thought I had this recovery thing nailed! But at some point, I hit zero. Hence, the little breakdown last week, the canceled plans to drive down and visit my grandma for the weekend, the call in to my doctor that my whole body ached, I was digesting things more audibly than normal and I was just EXHAUSTED.
"You’re doing too much," the nurse told me. "This is all normal post-treatment, but you need to remember that this might take six months to a year to get back to normal." She reminded me to balance activity with rest and also suggested laying off the raw carrots for the time being (I came to that conclusion myself after two agonizing days I will not go into here).
SO. Yesterday, after eating, showering and getting ready for work like any other Monday, I realized I just couldn’t do it. I called in sick at 9 AM. I took my pillow to the couch in the TV room and didn’t get up again (other than bathroom breaks and once to make a PB&J) until 6 PM. I admitted to my very dear friend who was in town for one night only that I didn’t have it in me to meet her downtown for a beer and cajoled her into coming over here. And the best thing I could have ever done for myself? I never gave that to-do list another thought. The dishes piled up. I didn’t submit my stupid disability paperwork. I didn’t even answer texts or emails. I just. Did. NOTHING. Like, really. NOTHING.
So now I get it. I’m relearning the art of doing nothing. Not, “nothing compared to what you used to be able to do,” but just absolutely nothing, and letting my body recharge. I feel so much better today, but just enough to type this out and make one phone call. Then I’m back to the couch. Friday Night Lights isn’t going to watch itself.
I had this whole post going about what I’m feeling this week, but this page pretty much says it all. It’s a real “wah waaaaah” kind of post, so beware! Not my normal burst of positivity and kickassitude.
JLP thinks I’m this tired after treatment because I spent so much energy being positive to get us through it all. I AM SO TIRED, YOU GUYS.
After a little more than a month of recovery time, I hate to admit how weird it feels to be chronicling what seems like the mundane parts of my life. Those daily posts May - September had perhaps a facade of a purpose to keep loved ones informed, but looking back it was a bit more selfish than that, wasn’t it? Clearly I write when shit is gnarly and I need to sort my thoughts. When I’m just chilling at home streaming Netflix and not shuttling back and forth to the doctors’, well, the pull to write doesn’t seem to be so strong. But I do have a few updates; yesterday when my little sister asked me whether I’d had any checkups to see if the chemo or radiation worked, I realized I hadn’t really posted anything for a while on that. So, herewith, a few milestones:
Oct. 17 was the one-month anniversary of my last treatment - an overnight stay at UCSF for two rounds of internal radiation. It just so happened to also be three years since JLP and I said our handwritten vows on the steps of an old farmhouse on a balmy Northern California fall morning. Over pad thai (me) and pork belly (him), we had a really good chat about where we are now. How our lives are a bit different. How we each are a bit different after this ordeal. How nervous I am to possibly lose the “old” me. How he has never once assumed that that might be the case. Big experiences beget big talks. All good, but emotional nonetheless.
Oct. 25 was my followup with my rad onc at UCSF—an in-person appointment that could have easily been done over Skype and saved us the 3-hour one-way drive. He has a strict ‘no physical exams for 3 months after treatment’ policy and just wanted to go over any side effects I might be having. Other than a mild nightly hot flash and a bed time that would make any parent of toddlers proud, I’m A-OK on that front.
Oct. 29 was my valiant return to work. I’m back part-time, just 20 hours a week, in a new position that I couldn’t be more thrilled to pursue. The family-owned company I work with just celebrated their 10th anniversary; until now, I’ve never had a job that I’ve held for more than 3 years and still wanted to stay long-term and contribute to the company’s ongoing success. But that is exactly the case now and it is SO exciting. To feel needed and integral in a company’s daily operations is an incredible gift that I know I can’t squander.
Yesterday was my birthday, a day that I’ve always felt should be a national holiday. I always think that as I get older I’ll become one of those women who demurely lets her birthday come and go without mentioning it, for fear of alerting anyone to her fateful aging, but NO. I wake up with the birthday song in my head (‘nuh nuh nuh nuh NUH nuh, nuh nuh… “you say it’s your BIRTHDAY!”), I order donuts for everyone in the office, I wake up before my alarm and ask JLP, “guess what day it is?!” a game he grudgingly plays every year. I knew yesterday was supposed to have a grander feeling to it. My first birthday post-cancer. And I don’t know if it’s because I’ve had so much downtime, but even with the song and the donuts, this particular birthday felt less monumental than others. I wonder if the reasoning will hit me at some point - maybe during my nightly mild hot flash - but if I had to put it into words today, it would be that now, after everything we’ve gone through, celebrating one day every year isn’t enough. It isn’t enough to say, ‘whew! Made it through THAT year!’ Now? Every day is worthy of celebration. My dad might be onto something when he says on his birthday every year, “it’s just another day,” but it can’t be that it’s just another mundane day of punching in, punching out, hitting the gym, making dinner. In the words of Lucas from Empire Records, one of my favorite movies of all time, “what’s with today, today?” Seriously. Find one glimmer of something worth celebrating every day. Every. Fucking. Day. Birthday or no. /soapbox
Dec. 5 is my PET scan to make sure they got all the cancer. Until then, I try not to think about it every day, a task at which I’m getting better but still not tackling to my liking. The fatigue, the weird new issue with crowded rooms and loud noises, the lack of appetite and a few more things remind me every day that I’ve just returned from a one-woman battle zone. Every new little feeling that wasn’t there before May, this new little bump right underneath my right boob that the doctors say is just a weird cyst (yes, I have an appointment to get it checked out anyway), my need to rest in child’s pose during a yoga class that would have previously been a breeze…nothing gets by me now without checking in with the “could this be related to cancer?” desk. November is going to be a long month, but I’m ready for it.