First off, apologies for the long absence. Between working from home, homeschooling, gardening (I’ve got a CRAPTON of veggie plants and flowers that I love, pet, kiss, and call my green babies), bread baking (while the yeast lasted), quilting (I’m seriously turning into my grandmother), I’ve been a little busy in quarantine.
We’re all just trying to get by here
Busy is good. Busy has kept me from wallowing and perseverating over my upcoming mastectomy. Two years after oncoplastic surgery to remove the tumor in my left breast and reconstruction involving a breast reduction and lift, we found residual disease. My left breast has to go.
Thanks to Covid-19, my reconstruction will be delayed. That’s not super unusual, as women who opt for implants normally get expanders to stretch their skin prior to permanent placement of the implant. But it’s still stressful. I’ll be lopsided for a while, but I opted to keep the right breast to preserve sensation on at least one side. You knew you lose ALL sensation following mastectomy, right? The new boobs look fantastic and do you no good from an intimacy standpoint.
More on that in a later post.
This post is about perspective, looking ahead to tomorrow, the next few weeks, the next few months, and how to move forward. I received the following message from a Facebook friend, and it is perfect. I’d like to share it with all of you:
“Happy Mother’s Day, Dana. The most Hallmarkesque of the Hallmark Holidays. I trust that Patrick and the brood are making a fuss over you today, and every day.
Patrick has spilled the beans about tomorrow. I imagine that you must be both determined and more than a little whacked out and scared. If you weren’t, I’d be more worried about you.
Surgery is a big deal, and you wonder what life will be like on the other side. At least I did as I prepared for mine last year, when I was blindsided by news that my prostate had to go. I’ll spare you the gory details, but I am delighted that you will be spared the indignity of having a rubber tube jammed up your wee wee for 2 weeks.
I can report that almost a year later, life is still good. Turns out that my masculinity had virtually nothing to do with the operational status of Mr Happy. Your femininity has nothing to do with your hooters, to use the most inoffensive yet funny term I can think of. Bazooms ran a close second.
The most attractive part of a woman to me is her brain. I pray that with the surgery behind you, your brain can be free from worry, and that you can fill it with more good, tranquil and beautiful thoughts.
Your family loves you, especially that bizarre Dutch guy. We are all pulling for you, and send healing thoughts, love and joy.”
Thank you, Survivor Brother. That’s exactly what I needed.
As much of America (not enough, but we’re getting there) and the world at large continue to shelter-at-home, self (or mandatory) quarantine, and take other measures to flatten the Covid-19 curve (In epidemiology, the curve refers to the projected number of new cases over a period of time), we’re facing many new challenges. We’re worried about our finances, job security, food security and the supply chain, medical supplies, and the economy, of course. We’re worried about our families, friends, communities, and the long-term impact of this pandemic. We’re worried about our childrens’ education, which like most of the rest of societal norms, has been put on hold. We’re worried about how and when the pandemic will end, and what we can do to prepare for the next one.
There will be a next pandemic. It’s inevitable.
For many of us who are classified as non-essential workers, we have more time to worry as we remain isolated from friends, family, and other social supports. It’s the perfect storm for anxiety and depression to thrive, and it’s a problem. Maintaining mental well-being, as well as physical and spiritual, can be a struggle in these difficult times. But it is essential if all of us are going to get through this.
I’m fortunate to have access to Telehealth services – hell, let’s be real: I’m fortunate to have access to healthcare and coverage in this nation, something we should ALL HAVE. I’ve been receiving tips from my wonderful therapist (and my son’s therapist, too), and I’d love to share this advice with all y’all. I hope it helps.
Keeping a routine is beneficial for health and well-being. You don’t have to be super rigid about it – flexibility is key. For us, weekdays consist of a regular wakeup time at 8:00 a.m., a loose homeschool schedule, regular healthy meals, free time in the evening, and a regular bedtime. Small steps, but they are sanity savers in uncertain times. We don’t know what’s coming tomorrow in the wider world, but we know what we need to do for the hours in the day. This is especially good for children.
The media is a double-edged sword and has been for a long time. It’s important to keep abreast of local, national, and international news in a time of crisis, but too much apocalyptic doomsday speculation, news of tragedy, talking heads arguing back and forth, and watching our leaders at their worst isn’t healthy. Social media is much the same. Take a break. My therapist suggested having a designated 30 minute to 1 hour slot for checking in with the news and “unplugging” for the rest of the day. News is one thing, but I’m a social media addict! I love FaceBook, Twitter, and Insta, and these tools can be useful in terms of feeling connected with people during the isolation period. But avoid fights, don’t use social media as a gateway for too much bad news coverage to seep in, and don’t fall into the rabbit hole of 3 hours in TikTok land. That’s just not healthy.
Healthy Eating and Exercise – Essentials of Self-Care
This one’s been a challenge for me – eating healthy is hard when you love to bake and have time. But there are no downsides to healthy eating and exercise, and many of us have time now! The Internet is full of amazing recipes, which is especially useful when you’re working with a limited supply of ingredients. Check out this site for tools to help you plan meals based on what’s in your fridge and pantry. If you’re having trouble feeding yourself or your family, check with your school system (MNPS is continuing weekday meal service for students and families), food banks (find one near you here), and for state and local programs in your area.
For exercise, something as simple as stretches, sit ups, jumping jacks, and leg lifts are always a good choice. I’m working on strength and flexibility to manage side effects of tamoxifen and prepare for my mastectomy, so yoga is my go-to. Yoga with Adrienne is my online go-to. Walking through your neighborhood (while maintaining social distancing) is another great option, as is yard work, housework, and games like Just Dance and video game fitness options. Move your body several times a day in whatever way works for you.
Need to unwind? Warm baths and showers with extra pampering time are fantastic. Deep condition your hair, massage your scalp, practice mindfulness as you take care of your body. Whatever spiritual path you follow, rituals work to calm, heal, and comfort in difficult times. Use them, but do it safely. No mass gatherings!
Find Connections When and Where You Can
Remember when I said to avoid social media? While avoiding the negativity on social media is a great thing, using it as a tool to connect with people you cannot see in person is a beautiful thing. I’m appreciating all of the amazing talents on display in FaceBook, Twitter, and Insta videos, which is even more fun with people I know! Have an IM chat. Call a friend or family member. Use Zoom, Skype, or FaceTime if you’re so inclined and are willing to put on a bra (pants optional). Human connection, even for introverts like me, is essential.
You might consider creating content to share during quarantine. I’ve done my part with this dramatic reading of “Does It Fart” to educate and entertain the public with the subject of animal flatulence.
Don’t Drink, Sleep, or Work Too Much: Moderation
It’s tempting to use this shelter-at-home thing as an excuse to over indulge. If you’re drinking or using drugs to self-medicate, though, please stop! You’re risking your life, health, and emergency medical services are already strained due to the pandemic. Get help! You are important, you matter, and we can’t lose you!
Getting rest is a good thing, but too much sleep isn’t healthy. See above – keep a routine, including a normal sleep routine, for health and sanity.
It’s tempting to use this time to dig deep into work-related projects, as many of us feel the pressure to catch up, not get behind, and are worried about career and job security in this difficult time. But, as noted above, routine is key. Work, take regular breaks, and STOP each day. This is therapist-recommended!
Have fun and Be Weird
My photo – I’m the soure!
You’re at home with family, pets, or possibly on your own.
Embrace your weirdness and have fun with it!
In my house, we have Bob, the Halloween skeleton who we’ve decided is (a) not just for Halloween, (b) gender fluid, and (c) a being for all seasons. Bob likes to dress for the season, so he’s sporting one of my favorite sundresses, a lovely cap, and is striking a sassy pose with flowers. That’s my weird (one of them, anyway).
What’s yours?
Resources for pandemic: Ready.gov, Benefits.gov (resources for unemployment, healthcare coverage, food), GrantSpace.org (links to resources for bill pay assistance, grants, etc.)
I’ve come to terms with the fact that I’m not done with breast cancer yet. But I don’t have to like it, and I don’t have to pretend that I’m entirely okay. I need help. Still in therapy, meeting with my care team on Thursday to come up with a game plan to get rid of this stupid little 6 mm bastard of a tumor, and then meeting with the plastic surgeon the following Monday to discuss Tits 3.0.
It’s a lot. What’s keeping me sane right now, aside from my family, Netflix Comedy Specials, and cat videos on Facebook, is my work. Y’all, I get to kill breast cancer cells ALL THE TIME in the lab. It’s so cathartic and gratifying. I wish with all my heart it was as easy to kill cancer cells in patients as it is in little plastic dishes. It’s not, but what we discover in little plastic dishes could eventually lead to the next cancer therapy.
The message is clear – DIE BITCH ASS CANCER CELLS!
My amazing student, who’s working with cancer cells that are similar to mine (hormone receptor positive), saved a plate for me. Not only did she save a plate, she decorated it with an adorkable “destroy me” tag that made me giggle snort.
I adore her.
Naturally, we decided to video me killing cancer cells.
Videography credit Kalin Wilson
As noted in the video, please for the love of your health, do NOT drink hydrogen peroxide to kill you tumor. It’s #toxic and not in a way that will target your cancer. But, as you can (hopefully) see, it stresses out the cells in the dish, overwhelming their defenses against oxidative stress to the point of death.
But, having the power to kill tumor cells that are similar to those growing in my body helped me on a psychological level. And if any patients or survivors want me to kill cancer cells like yours in the lab, I’m down! Hit me up. I can use chemo drugs, approved and experimental cancer drugs, peroxide, detergents, soda (it totally works), you name it. Let’s get creative!
Warning: This post is full of swears. It’s been a total shit day.
Getting “normal” annual mammograms after breast cancer is nerve wracking. I get that. Literally. Today was my second routine mammogram after completing surgical and radiation treatments. What (I’d hoped) would be an hour long visit followed by an, “All clear! Go, and live happy,” turned into a 3 1/2 hour long ordeal that consisted of FOUR FUCKING IMAGING sessions, an ultrasound, and scheduling another biopsy.
For those of you who’ve been there, done that, bought the T-shirt (that reads, “Of Course They’re Fake – The Real Ones Tried to Kill Me”), you get it. I’ve had several survivors in my circle offer support, well-wishes, and cat memes, and I’m grateful. For those of you who haven’t been there (and I hope you never are), let me give you some background. At the time of this blog post I’ve had:
Six biopsies (last time was a charm with the Big C)
Two lumpectomies (one to remove a benign papilloma and the other to remove cancer – followed by oncoplastic reconstruction involving a reduction and lift)
Implantation of TWO Savi Scout devices to mark my tumors (this was mammography assisted, meaning I was in fucking compression while two GINORMOUS needles the size of small screw drivers were stuck into my left boob and I actually saw the tip of one come out the other side)
Twenty-eight rounds of radiation on my left boob – crispy bacon, anyone?
You’d think that would be enough. Seriously. But, alas, not for me. Whenever I go in for routine checks, I get the extra imaging, the call backs, the ultrasounds, and the biopsies. My breast are pincushions. It’s not fun.
Today’s visit started out well enough. I went into the room with my lovely robe, wiped off the deodorant I’d put on (because I forgot that I wasn’t supposed to use any), flopped out one boob, then the other, let the nice nurse get to second base while positioning my boobs, had my (first) mammogram scans and returned to the waiting room. Aside from being a bit sore (the left boob, cancer boob, is harder than the right thanks to radiation and it’s pretty uncomfortable in the old squeezy squeezy machine), I was content. I texted the lab to tell them I hoped I’d be in soon and then enjoyed some Facebook and Twitter time while waiting. I also had in-room entertainment in the form of a brash and bawdy lady who was Skyping – loudly – and having the kind of inappropriate conversation that you kind of want to film because it’s disturbingly awesome and no one will believe you unless you record it. All in all, not too shabby.
Then, they called me back. Just need a few more images, they told me. Nothing to be concerned about. I groaned, but was still okay. Considering my normal experiences with mammograms, this was a drop in the boob bucket. I got squished, got sore, and was escorted back to the waiting room filled with other women in those high fashion robes you get when you have to get your boobies squished. My entertainment was gone, and I missed her terribly, but I was slightly more concerned with the passage of time.
I mean, I did have work to do.
They called me back again. This time, the nurse (BTW, they’re all wonderful and I don’t fault them for any of this) explained that they’d found a spot. It was of concern because they hadn’t seen it on my previous post-treatment scans. They hadn’t seen it, because apparently this time the nurse was so good that she got images closer to the chest wall and they were seeing new areas for the first time. On the one hand, go nurse! Great technique!
On the other hand, WTF is the spot? Is it something I should worry about? We don’t know how old/new it is because we haven’t seen it before. Seriously, I’m two years out. I shouldn’t have a recurrence.
They needed another set of scans to make sure it was real, especially since they’d seen it only in one image/plane. So, for the third time, back in the boob vise for a trip to fuck that hurts land.
I go back to the waiting room. And…I’m called back for – I shit you not – ANOTHER round of images. This time they let me stay in the room with the owie machine while I wait for the radiologist to have a peek. Shortly thereafter, they tell me, as I predicted by this point, it was ultrasound time!
I’ve had plenty of ultrasounds.
As is my standard practice, I asked if I could see the screen, explaining that I’m a breast cancer researcher. Yeah, I got breast cancer, too, the irony isn’t lost on me. Yes, I’ve become more passionate about my research and am getting into advocacy, too. Sure, I’d love to see the mammogram image of the spot in question. Interesting (i.e. I have no idea if what I’m seeing is bad or not – then again, neither does anyone else or I wouldn’t be here).
I flopped out my left boob, the one I’d called a pain in my ass during my 4th time in the booby squeeze machine (and made the nurse giggle snort), put my left hand over my head, got the ultrasound goo smeared over my bad boob, and then the nurse commenced with the scavenger hunt via wand. And she wanded. And she wanded. And she wanded.
My arm was getting a little numb, and I was a bit concerned that she wasn’t taking pictures, but I just chilled. Then, she told me she wasn’t sure anything she was seeing matched the spot on the mammogram. So she grabbed the radiologist, who came in, goo-ed me up, and wanded. And wanded. And wanded.
The radiologist laid it out for me. They’d seen this spot, which was uniform in shape, an oval, and was most likely nothing to be concerned about – fat necrosis, an artefact of scarring, or a benign lesion. Given that it was in my bad cancer boob, she recommended a biopsy. And since they couldn’t find it by ultrasound, I would need a mammogram guided biopsy.
That’s exactly as sucktastic as it sounds. I will be put in (terribly uncomfortable) mammogram compression and stay there while someone jabs a fucking biopsy needle into my boob. Yes, I’ll have lidocaine, but that’s not going to help with the squeezy squeezy or the HORROR!
And, while I wait 9 days for the biopsy and another 5-7 days for the results, I’ll be stressed out. This is the reality for survivors. We’re ALWAYS nervous with scans, and it’s compounded when extra examinations are needed. It’s terrifying. Yes, rationally I understand that the odds of finding another tumor are extremely low, but the fear is visceral and always there. I’m worried it always will be. Most days, I’m upbeat and snarkily positive, but not today.
Some days, the best you can do is just hope for better tomorrow.
Living with cancer (even post diagnosis, treatment, and in remission, once you’ve had cancer, you’re always living with it) is weird. One minute I’m going about my day and not thinking about my body, my janky scars, and what’s left of my boobs (which I’m soooooooooo grateful to still have). Then, at strange, random moments, I’ll suddenly stop and think, “Fuck, I had cancer! I might still have cancer. What if it’s still there? What if it’s hiding out in my body and lurking, getting ready to say ‘Boo!’ two, five, ten, twenty years down the road?”
That shit will keep you up at night, give you panic attacks, make you hypervigilant (i.e. your lizard brain starts looking for threats around every corner), and make you tough to live with – even for you. I’d been down that road before with two bouts of postpartum depression (PPD) after the birth of each of my children. I recognized the symptoms once I slowed down and stopped using my favorite unhealthy coping mechanism – avoidance. Shortly after my diagnosis, I worked to the point of exhaustion in the lab, at home, and on my side gig, staying up late in the name of productivity and maximizing creativity, but I wasn’t fooling anyone.
I was fucking terrified.
After a year and a half of ups and downs – with a short stint of therapy before I learned I wouldn’t need chemotherapy – I gave myself a cosmic kick in the ass, acknowledged that I was not fine, and that I needed help. I’d tried using the Cognitive Behavioral Therapy (CBT) techniques I’d learned while in treatment for PPD, and I’ve been on anti-depressant medication for years (and make no apologies for it – if you can’t make your own neurotransmitters, store bought is fine), but I was still losing sleep and spending so much time worrying about if/when the cancer might come back that I wasn’t fully enjoying the life I was lucky to have.
I stopped, took a deep breath, and (finally) pondered what I’d been through with cancer – the shock and terror of the diagnosis; the fog of uncertainty while waiting for pathology reports, blood work; weighing the pros and cons of each surgical options; the needles for biopsies and implantation of SAVI SCOUT devices; waking up to a new body after surgery; finding out I had a positive lymph node; the burn of that tender healing flesh during and after radiation therapy; the indignities of hormone suppression therapy; loss of time with family, loss of work, loss of my life as I knew it and coming to terms with a new life.
I was alive, I’d been able to skip chemotherapy, and my prognosis was great, and yet, I was still broken. Looking at the list from above, it seems like a no-brainer. Of COURSE I was broken. But my biggest blindspot was and is me. It took a while, but I finally understood that I couldn’t process this on my own. I needed help so I could be the best version of myself for my family, my friends, my colleagues, my community, and myself.
So I got myself back in therapy, got a refresher on CBT along with adding mindfulness meditation, breathing exercises beyond the standard inhale for four beats and exhale for four beats to stave off anxiety (inhaling for four beats and exhaling for seven worked wonders for my sleep cycle), and the COOOLEST of all new (to me) techniques – postponed worrying! This has been a game-changer for me. I’m a scheduler – working mom with two side gigs and a husband who’s out of town half the week. I’m also a worrier. The simple act of taking time to sit down and devote my attention to my worries (writing them down and, using CBT techniques, identifying and fighting cognitive distortions) for a set amount of time has helped me NOT dwell on those worries for the rest of the day.
There are no downsides to taking care of your mental health, and plenty of benefits. The best part? In addition to helping you live your best, quality life, taking care of your mental health can be beneficial to outcomes like decreased recurrence and longer survival. References here and here.
Will there still be hard days? Absolutely. And it’s okay to go down into the well of despair. What therapy can do is give you the tools you need to climb out of that well and get back to your regularly scheduled life.
Special note – this post is by no means an endorsement of “the power of positive thinking” and toxic positivity (that’s a thing – people who tell you to just shut out natural, negative emotions associated with trauma are dickwagons and you should walk away from them. You have to process your emotions in a healthy way).
Talking Tatas 