An anniversary that’s really only important to me has come and gone and so has more than a year since my last blog post, called “Candle #3”. In that post, I spoke of the significance of June 1st in my life. Now, another June 1st has passed and Candle #4 was lit. Amen. These candles mark the anniversary of the double mastectomy that began the journey to eradicate cancer from my body. Multiple surgeries, chemotherapy, daily medications, monthly injections, blood draws, infusions, regular scans and all kinds of therapies and complications (oh hello jugular vein DVT clot – thanks for the surprise visit) are all plot points on this cancer trek to somewhere I still don’t know the name of. “Survivorship-port”? “Thriver-ville”?
Lighting a candle is my way to note something definitive on the map: another year. Another year is quantifiable like the miles between two map dots or the elevation of a steep climb. Taking a moment to look back helps me feel a sense of accomplishment for all those many steps. Anyone who has gone through cancer knows the days that mark the silent yet personally significant “cancerversaries”, but in truth, I think most everyone have silent anniversaries. There is a space between these silent anniversaries that can be so lonely, silent and maybe even dark and arriving to the next anniversary can feel daunting.
As I light my candles each year, I think I’m also trying to shine the light for anyone else who may feel lost as they travel between those spaces of silent anniversaries and may want to give up before the next day slowly unfolds. If that is you, please keep going. It matters. Tomorrow you might go a bit further and before you know it, you will have something to celebrate. Celebrate whatever makes sense for you and mark those milestones. My wish is that you light every candle you get the chance to…eat the cake and dance when you hear your favorite song and if you want to share the picture or write about your experience, this space is for you.
Mugging up is a way to connect, share our stories, and celebrate each other, wherever we are on our journey. In the next year, is there a milestone or anniversary you want to acknowledge, remember or even celebrate? If you want to be a guest blogger and share about a personally significant anniversary, please reach out and we will make plans to get your story on this blog and share in the glow of your candles.
Until next time,
~Mug Up Mermaid
PS – My mom already bought me Candle #5. I look forward to lighting that candle and maybe even tossing some glitter up into the sky. Who knows, maybe you will join me?
Some anniversaries are solitary and often I hold those tightest to my deepest and hidden places, but they still matter. And though solitary, I have learned there is a soul-connected sharing with some individuals who are tethered to this journey with me and for that, I thank you. When the riptides come, as they are sure to do, I know I have a human chain that will lead me back to shore. I thank you for witnessing my journey and I hope I create the same space to witness your journey. The tides will come and go and to mix the metaphor, it reminds me of something James Taylor says in one of my favorite songs…
“We are bound together by the task That stands before us And the road that lies ahead We are bound, and we are bound”.
So, today is three years of being bound with others for a task we did not seek. Three years since my bilateral mastectomy and a journey through reconstruction, chemotherapy and all the complications that are still in my everyday life as a cancer patient. I honored this date on the first and second anniversaries with a picture and a candle and wasn’t sure if I wanted to do the same this year.
Today after time with a trusted circle of women who have experienced breast cancer (thank you, Creative Transformations), I decided I would still light the #3 candle. Wrapped in beads from someone who has witnessed my journey mostly from a screen (thank you, @bossierthanbreastcancer for the handful of magical in person moments, too), smelling the sea roses and ocean breeze and feeling the strong June sun in my backyard, I lit the #3 candle and made my wish for the year ahead with the full realization that there is guilt in “survivorship” and sometimes I don’t know how to do the work. Sometimes it puts me to my knees and yet I am bringing my vulnerable self and I am showing up.
As my friend (and writing mentor – look up Write with Tanya to maybe join our group) wrote today in her blog from her kickass business, JAK Designs, “I too, have been watching the world from behind a mask for over a year.” So here I am, another year being acknowledged and seen and taking down the mask by sharing my story. Being seen is important and in this corner of social media, you have helped me feel seen. Thank you. It mattered.
Earlier tonight I was on my yoga mat, sharing one last Zoom screen with others experiencing cancer (we will tiptoe into being together in the studio next week) and I lit a second candle for gratitude. I lit it for healing. I lit it for Rett and all the missed loved ones. I lit it for sacred spaces and connections, even by Facebook, Instagram and Zoom. And I blew the candle out and the only wish I had was for peace to shine. So, it only seems appropriate to end this post with more from the James Taylor song…
“Shed a little light, oh Lord (shed a little light, oh Lord) So that we can see, oh yeah Just a little light, oh Lord (just a little light, oh Lord) Want to stand it on up Stand it on up, oh Lord (stand it on up, oh Lord) Stand on up, Lord Want to walk it on down Gonna shed a little light, oh Lord (shed a little light, oh Lord) Shed a little light, Lord”.
Thank you for those who are shining lights and holding linked arms for the riptides. Wishing you peace. On to year #4.
Friday was day number 952. Two years, seven months and seven days with my chemo port. For those who don’t know, we broke up. She served her purpose and made chemo and blood work so much easier all those months since my double mastectomy and then a variety of complications. However, she outstayed her welcome and created a painful dvt blood clot in my jugular vein. After a few weeks of IV hydration sessions (I couldn’t swallow when pain was at its worst) and twice a day injections (IN MY STOMACH – ouch), the vascular surgeon said it was time for her to go. It surely felt like time. Actually, I was ready for us to break up a while ago, but then COVID put her squarely in my quarantine bubble and she remained in my “pod”. No social distancing for us. When the vascular surgeon said we had to get her out, I was flooded with gratitude to have something that felt like a tangible and positive rite of passage in this cancer journey. I didn’t need her anymore.
I’ve always been what nurses and phlebotomists call a “hard stick” so the convenience of how all those bags of chemotherapy, blood transfusions, IV hydration, medications and dyes for various scans got into my blood made the port worth it. Early on I thought of it like a blood sucker and the lump of it under my skin, just below my collarbone, looked like I had a permanent hickey on my chest and the wire that went up my neck always bulged out like I was on steroids. I was sensitive about how it looked, especially if I forgot and wore a low cut shirt.
As time went by, I forgot about it unless it was time to be accessed during my monthly labs at the cancer center or if I was face down on a massage or osteopathic table and could feel it being pushed in by my body weight. It became just part of the trail of other scars on my body and I became less self-conscious about it. As everything tied to cancer became less scary, so did my port. I began to appreciate how helpful the port was and like my other scars, I learned to see it as a battle wound that showed I was a warrior. It may sound weird, but I’d often lay my hand on top of it and pray. I was grateful for the chemo it brought into my body to keep me alive. And, I was grateful for the blood that was pulled out to assess where I was in my healing. I even gave her a name – Violet.
Why did I call her Violet? The color violet made me think of life and passion and rebirth and the future – all spiritual qualities that are the foundation of my faith. Violet is spiritually calming and also feels a bit sparkly and magical to me. Instead of feeling attacked by poisons meant to kill the cancer that came into my port, I started to think about the blood that came OUT of the port for all the tests. Life flowing in and flowing out, in constant motion like the ocean and the tides that wash our shores every day. If you have ever seen that thin violet line between the ocean and the sky right at sunrise or sunset, you know what I mean. It connects the sky and the water and when the sun shines just right, the reflections are magical. There is beauty and promise in each sunrise and in each sunset. So, Violet represented life and passion and spirituality and beauty and maybe a bit of magic – all running through my healing body and then flowing out through my prayers and actions. Violet was the conduit for all that, until she wasn’t.
When COVID restrictions required me to work from home and my days became filled with seemingly non-stop Zoom meetings, suddenly, I couldn’t help but stare at Violet as I saw myself in that little “Brady Bunch Zoom square”. Seeing yourself on a computer screen all day gives plenty of time for self-criticism and hyper awareness of every blemish and bump and if I didn’t wear the right kind of top, I’d often be self conscious and tug at my shirt or sweater and try to hide Violet. I doubt anyone else really saw her, but to me, it was like a neon sign… HEY EVERYONE – SHE’S STILL A CANCER PATIENT!
Truth is, I am a cancer patient with all kinds of complicated other medical challenges. On my best days, I roll up my sleeves, get dirt under my fingernails and work hard as I cultivate the seeds of my faith. Other days, there can be a lot of stones to move and honestly, I’d like to throw them far away.
When the surgeon told me at the beginning of last week that the port would be coming out, he very carefully explained the procedure and we agreed to do it as soon as possible which meant not going to the hospital and having anesthesia. I’d be awake for the procedure and I asked if I could see the port after he removed it. He didn’t blink and think I was weird. In fact, he told me that it would be interesting to find out what color it was and that sometimes they are… purple. Violet.
So, on day #952, Violet was removed by the surgeon. He knew I was hoping it was purple, and I wish this story had a nice neat bow for the ending where OF COURSE, the port was purple. But, it was milky white. Almost ghost-like.
It is now a few days later and I still haven’t found a good way to end this blog post. However, I do have a funny story to share and let’s face it, there haven’t been enough funny stories lately, and in this story, I think I found the best way to end 952 days of travel with Violet.
When the surgeon walked in the room late last Friday afternoon, I immediately smiled. It wasn’t his kind eyes that made me smile (and he did have very kind eyes – isn’t that something we all appreciate even more now with everyone wearing masks?) or the fact that the physician assistant had put on music (I remember making a joke about the song selection but I’ve already forgotten what songs were played)… it was the fact that he was wearing a Scooby-Doo Mystery Machine surgical scrub cap. Mystery Machine for the win! Maybe that’s why Violet turned out to be milky white – after all, Shaggy, Velma, Fred, Daphne and Scooby-Doo looked for ghosts, right? And, while it didn’t happen, I’ve been imagining that as the surgeon showed me the color of my port the physician assistant said (in her best Velma voice) “jinkies”! And then, in this make-believe magic world, the surgeon certainly would have replied (in his best Fred voice), “Well gang, I guess that wraps up the mystery”!
Zoinks! I think all this means that I’m meant to buy a Mystery Machine as our time of social distancing from COVID ends. I want to plan a road rip and I’d love to have friends join me in search of mysteries and a bit of fun. If I find purple (Violet) Scooby snacks, who wants to plan a crazy and fun summer adventure? Surely there are mysteries out there we can help solve and have a ton of shenanigans living out our 12 year old dreams?
So, I’m off to find those purple colored Scooby snacks and maybe I’ll get team t-shirts ready and as our time of social distancing with COVID ends, maybe our Mystery Machine adventures will will be a blessed chunck of time where we can relax together knowing the scariest part of our days will be whether the coin collector or the headless specter or the thawed cavemen will be the ones to jump out and mess our day’s plans and not an unseen virus. There is a lot of adventurin’ in my plans for the post-Covid days ahead. Who wants to ride along? I’ll even let you drive, if you have kind eyes.
In the early 1990’s, I was volunteering at a summer camp in Peterborough, NH. Towards the end of camp one of the activities involved trusting a friend to make a plaster mask of your face while you were laying outside, on the ground. My friend Ann carefully applied the Vaseline to my face that would allow the plaster to set but not stick to my face and then she gently applied the cold, wet strips of plaster. There were two nose holes cut out so I could breathe, but I could not speak or see. I knew the sky was blue above me, the grass below me was soft and people were talking all around me. It was actually rather relaxing once I got over the fear of not being able to breathe and feeling like I was in the dark.
Finally the mask dried and we were told that our partners would carefully lift away the mask so we could have the mask to keep. It was gently pried off and as my eyes focused in the bright sun, Ann was not holding my mask. An old camp friend was looking into my eyes and held my mask. Without me knowing, he had stopped in to visit while we were doing the activity and had stepped in and taken over for Ann. He had finished applying the mask and then he was the one who had removed it. I was stunned and so happy – there are just not enough GOOD surprises in life, right? The lifting of my mask in a very unexpected way was somehow freeing. When I look at this picture I can feel the light; you can see my joy.
I’ve been thinking about that mask a lot lately. I actually still have it. It has moved with me at least a dozen times since the 90’s. I keep it as a reminder of the joy and the freedom I felt when the mask came off. Sadly, other masks went back on many times over the years as life just happened. The mask of being polite. The mask of being a wife. The mask of doing what was expected of me. The mask of good health. The mask of having my shit together. Yes, the mask came off once in a while, especially (or only?) if I trusted you, but truth be told, it might as well have been plastered on. Can you relate?
Over my journey of the past year and a half I have written here quite a bit about my breast cancer and other health challenges. At times perhaps, some may say I have shared too much information. But here is the thing…whenever I share the true me and my experiences (either here or in person), people often then share their true stories with me and there is always this moment of “I see you.” What a gift to see one another as whole, flawed, complicated, growing, wounded, funny, amazing people who are just trying to do life the best way we can. Taking off the mask allows people to connect and not feel so lonely.
There’s a song by P!nk that describes this shedding of masks and being authentic. She sings:
“It is of no interest at all to me what you have or who you know. Can you tell me where you have been? And what you’ve learned from it all? Tell me what you dance for, how you’ve been a fool. I don’t want the headline – I just want the truth…When you’re authentic, you’re incredible. I like the view behind your eyes…I just wanna lie underneath this tree while you whisper secrets on a melody. If this is the last song of your life then I’m inviting you to get it right.” (From “The Last Song of Your Life”).
This spring I started neuro-cognitive therapy after months of challenges that were more than “chemo brain”. I had fallen about 15 times (including when I broke my leg in three places – yes, it has been that kind of year) and simple things like reading, driving, making decisions, following directions or conversations and just being with people had all become extremely challenging. One day while waiting for one of my therapy appointments I noticed some painted plaster face masks on the hospital wall. They were all painted by people in an art therapy class and had a little description by each artist. The masks told stories of what they wished people could see behind their masks of living with a traumatic brain injury. The unseen losses and sadness…the anger and frustration of living in a “fog”. They described why they chose certain colors and symbols and many masks were divided right down the middle or across the brain. Upon closer examination, the masks also showed joy and strength and suddenly I remembered my mask from almost 30 years ago and the utter joy and warmth I felt when it was lifted off my face.
I know all too well the struggle of people not seeing (or being allowed to see) what is under my mask as well as being aware of what they DO see on the outside. To most people who see me at work, church, on Facebook, in the grocery store… I look “fine”. In fact, I hear it almost on a daily basis and I often make a joke about how it is all smoke and mirrors or well applied makeup.
People see the mask I wear and think I’m “back” and that cancer and all the other health challenges are behind me. Yet underneath the mask, the true me is often frightened about cancer recurrence and medical expenses. I am easily confused and anxious and usually trying to hide physical pain. Perhaps you know these feelings for yourself but you also play the role of a confident, strong and happy person? I’m learning how heavy wearing that mask is. It is actually exhausting and confining. Each time I take the mask off, I feel lighter. It feels like wild abandonment. The closest thing to this feeling for me is how I feel anytime I am swimming in warm water and the sun is shining on my face. Letting go and just being in the light feels like answered prayers to me. One of my favorite writers says this about prayer:
“Prayer can be motion and stillness and energy – all at the same time. It begins with stopping in our tracks, or with our backs against the wall, or when we are going under the waves, or when we are just so sick and tired of being psychically sick and tired that we surrender, or at least we finally stop running away and at long last walk or lurch or crawl toward something. Or maybe, miraculously, we just release our grip slightly.” (Anne Lamott)
Or maybe we simply just need to take off our masks.
So, now I am in that very same art class as someone diagnosed with a traumatic brain injury. My teacher, Hillary, is teaching me how to express myself through art and lessons often include a writing component. Connecting words to visual art is new to me and I am loving it. But the most meaningful lesson has been about learning to trust that when I take my mask off more and more, I feel real. Regular Mug Uppers know when “Julie Ann” is writing versus “Julie” and I think it is the same in the art class where I feel safe to be a whole person. In art class, Julie Ann is trying new things that are out of her comfort zone and the paintings are starting to take on a distinctive style. Another way to say this is that Julie Ann is taking the mask off more and more in all areas of life and I like her.
Yes, sometimes it is scary not knowing what people will see when I take that mask off. The 30-something year old mask from summer camp is sitting in front of me right now while I write this blog. I think of the face that was beneath the mask while it was being formed and how I felt when it was removed and I felt the sun. The sky was blue. The grass was green. People I loved surrounded me. I felt joy. I felt peace.
Anne Lamott describes this feeling so well for me:
“Light reveals us to ourselves, which is not always so great if you find yourself in a big disgusting mess, possibly of your own creation. But like sunflowers we turn toward light. Light warms, and in most cases it draws us to itself. And in this light, we can see beyond shadow and illusion to something beyond our modest receptor, to what is beyond us, and deep inside.”
With a grateful heart and thanks to SaltyGirl Beauty, I was a guest at the Warrior Revolution retreat last weekend. It was an amazing retreat for women stacked with inspirational speakers, medical experts and social media influencers who addressed “the unique issues women with cancer face through honest, provocative and positive conversations.” In other words, we took our masks OFF. A repeated phrase throughout the weekend was to “be a flashlight” for others. This thought has stayed with me and it has inspired me to develop a new focus for this blog so stay tuned! As one of the speakers (@kelseyfoxbennett – follow her on Instagram!) said, “I see you exactly as you are – it is safe for you to just be here.”
Here’s to taking off our masks, seeing each other, finding the light and sharing that peace.
I had a quick mug up (coffee and unsweetened almond milk) by myself earlier this morning…our peach tree is full and the “drops” are starting. I’m glad I went out and stood under the tree for just a few quiet moments before the craziness of my day began. What was in your mug today?
So, this is something new. I’ve accepted a “Blog Hop Challenge” from @Nancyspoint. What is a Blog Hop? Basically, I’ll answer the below challenge questions and then I’ll be added to a list of other bloggers who are participating (not everyone is writing about cancer) so we all can learn about other blogs, make new connections and friends. Regular “Mug Uppers” know I sometimes write about my cancer journey. Sometimes I don’t. But always, the invitation is there to be together over a Mug Up and share our authentic selves. I hope you all enjoy meeting each other and sharing our stories. So, here goes…
2019 Blog Hop Challenge Questions
1. Who are you? If applicable, share anything you want about your cancer (type, stage, when diagnosed, whatever.) Share something about yourself such as where you live, the name of your blog and it’s “mission”, a challenge you have faced or are facing now, or whatever you want.
I’m Mug Up Mermaid, aka Julie, but to some I’m Julie Ann. New readers will have to go back and read my June 2018 blog to know why “Julie Ann”.
To understand the title of my blog, this will get you started:
Mug up: term used in coastal communities since the 1880’s to describe a coffee break or snack. Fishermen would gather to warm up and have a hearty meal. (Urban Dictionary)
Mug up: to study intensively. (Merriam-Webster)
Mermaid: a fabled marine creature with the head and upper body of a woman and the tail of a fish. (Merriam-Webster)
“I must be a mermaid, Rango. I have no fear of depths and a great fear of shallow living.” (Anais Nin, The Four-Chambered Heart)
I started this blog as a way to get comfortable with people reading my writing as I worked on a novel and I wanted to encourage people to share what was on their minds. Then, WHAM! Cancer kicked in my door and my blog became a way for me to process my experience. I was diagnosed with breast cancer in April of 2018, had a bilateral mastectomy, reconstruction, chemo and now daily and monthly medications. I’ve been on and off medical leave for the past year (long story and threads of it can be found in the blog posts) but I’m getting ready to return to work in a few weeks. Back to normal? Not sure what that means. A new normal? That’s what “they” say… Fresh eyes and a more open heart? Definitely.
2. Have you ever participated in a blog hop before?
3. What’s your favorite sort of blog post to write and/or read – personal story, informational, how to, controversial, political, opinion, rant or other?
I’m drawn to blogs that are personal narratives especially ones that have authentic voices and are that perfect combo of funny, sassy and sometimes salty.
4. Describe yourself in three words. Yes, just three!
Loving. Playful. Inquisitive.
5. Name three of your favorite books from your youth (whatever age that means to you.)that had an impact on you.
“The Witch of Blackbird Pond”. “Charlotte’s Web”. “The Velveteen Rabbit”.
6. What are you reading right now, or what’s on your to-read list for when you have time?
“Coping with Concussion and Mild Traumatic Brain Injury”. “The Alchemist”. “Wuthering Heights”. “I’ve Been Thinking”.
7. What’s your favorite dessert of all time?
Key Lime Pie.
8. Tell us about a special pet you have, had, or would like to have. (Never wanted a pet, that’s okay too.)
All my pets have been special…my fur babies! Here are a few of them over the years because, awww, who doesn’t love a break from reading a blog by looking at cute doggie pictures?
9. What’s something people don’t know about you and might be surprised to learn?
I’m a direct descendant of the person who coined the phrase, “In God We Trust” for our currency, Salmon P. Chase. He was the sixth Chief Justice of the United States. He also served as the 23rd Governor of Ohio, represented Ohio in the United States Senate, and served as the 25th United States Secretary of the Treasury.
10. Do you believe healthcare is a privilege or a right?
Both. Especially after seeing what it is like in places where neither are true.
11. What’s your favorite thing about blogging and/or reading blogs?
I love reading a blog and seeing I’m not alone in some of my random, obsessive and crazy thoughts.
12. What’s something you really suck at?
I suck at being patient when someone is reading out loud to me.
13. What’s something you’re pretty good at?
I’m pretty good at remembering to write thank you notes.
14. How do you escape from cancer (or life in general) worries?
When I was a freshman at University of Maine at Farmington, my very first roommate was Sarah MacLaughlin, today’s guest Mug Upper. Sarah Sunshine (as I have always called her) was a free spirited, cool chick. My roommate was supposed to be my childhood friend Heather but she ended up going to UNH and at the last minute, I was assigned Sarah. I don’t think I even knew her name before I arrived on campus. Younger than me, she had done so many things I hadn’t done yet and she was always ready for an adventure. As people do, we each found our own place and friends at college and eventually drifted apart. We lost touch and in the meantime, life happened. Interestingly, we both lived out west but ended up back in Maine and thanks to Facebook, we reconnected.
A few months before I was diagnosed with cancer, we got together for the first time in about 27 years and I could not take my eyes off her. It was like being 18 years old again and our gray hairs and wrinkles had always been there. Oh, and that smile! Her soul shined and I remember feeling so comforted to have her back in my life. I was amazed to find out she was a published author and so accomplished in the field of child development and social work.
Then cancer happened. Or rather, kicked in my door. Our plans to get together and talk about writing were put on hold. I fell into the swirl of “Cancerland” and felt disconnected from regular life. And then, Sarah became one of my compass points throughout my treatment. I think I got a card or gift or Facebook message from her every week – even when she traveled to Europe. She understood how to write in a real way that acknowledged the fear, anger and sadness that came with a cancer diagnosis, but she also sent such affirming encouragement to kick ass and live out loud.
For any Mug Uppers that place a pre-order by 7/9/19 and leave a comment on one of the Mug Up Mermaid social channels, you will receive a special, customized gift from Mug Up Mermaid! Please share this post and encourage your friends to join the campaign. Come on Tribe, let’s help her meet that goal!
If we were together for a Mug Up, Sarah says her beverage choice would be a coffee with coconut creamer. Makes sense to me – she is comforting like a good cup of coffee, with a sense of quirkiness, like coconut creamer. So, here is today’s guest Mug Up – “Talking to Kids about Cancer and Death”.
You have a heart on your shirt Mommy?” My son asked me when he was two-and-a-half. I looked down at my “I hate cancer” t-shirt.
“Actually, it’s a heart turned upside-down. My shirt says, ‘I don’t like cancer.’” And because I couldn’t bear to hear him ask, What’s cancer mommy? I quickly added, “Cancer is a sickness that people get sometimes.” At the time this satisfied him, so I successfully bought another day to think about how to talk to my child about this tough topic.
It is a hard subject in general, further fraught by my own personal history. I was diagnosed with thyroid cancer when I was twenty-five. It being “the best kind of cancer to have,” I consider myself pretty lucky. I even dodged any intense or invasive treatment—the surgery was minor and radioactive iodine sounds worse than it actually is. But it took me a long time to work through feelings about it. Feeling like my cancer, “wasn’t that bad,” or “doesn’t really count,” are among the nuances. It was much more than survivor’s guilt.
When I was given a clean bill of health, I still felt scared and nervous about the future. I can’t foresee what is to come any better than you can. Death is something that is true and hard about life, it just wasn’t something I had previously thought much about. Someone recommended I read the book Dancing in Limbo, which I did. It helped me make friends with the unknown and define an outlook that was more hopeful. Even though my prognosis was fantastic, (it is the best kind of cancer, after all) I was still rocked by the truth that my body had housed and grown those rogue cells—it was terrifying.
Figuring out how to talk about cancer, with its association with death, is a hard nut to crack. I have trouble processing and understanding the realities of it all. I don’t have perfect answers about how to navigate these tough conversations. But I do have some suggestions and resources to offer:
Talk to another grown-up. Talking things through with someone before talking to your child can only be beneficial. If you can find someone who will holds space and not offer any advice, even better.
Don’t hide it. Kids will think even worse things are going on if they are not informed. It’s okay to be honest about how you feel. For example, “I feel very sad about Grandpa’s death. Even though it happened a long time ago, it’s hard for me to talk about.” Acknowledging your own hesitation can go a long way toward normalizing this complex issue.
Be straightforward and age appropriate. Share the facts and your feelings—for a four-year-old you might say, “Aunt Trudy has a sickness that can’t be caught like a cold or cough. She will be really tired for several months and her hair may fall out too. I’m worried about her, but I think she’s going to be okay.”
Honor the tension between, “I don’t know,” and, “It’ll be okay.” The American Cancer Society’s website, which is an excellent resource, suggests saying the following, “Sometimes people do die from cancer. I’m not expecting that to happen because the doctors have very good treatments these days, and this type of cancer usually does go away with treatment.”
Talk about death when it comes up in smaller, less personal ways. Use these teachable moments and discuss the news story, or the dead animal you found. DO NOT use the term sleep to refer to death. This is confusing and scary for children.
Share your family’s views about death and what might happen after. The children’s book, The Next Place, offers lovely illustrations and reassuring sentiments. This is a good time to talk about your family’s religion or any spiritual beliefs. Tear Soup is an excellent workbook for dealing with the grief associated with any loss.
Read books specifically about cancer. Billed as a hopeful, helpful book for kids with a loved one who has cancer, Butterfly Kisses and Wishes on Wings is supportive and educational.
This all reminds me of an exchange I had with my three-year-old charge when I was a nanny some years back. He and I had been frequenting a pond behind a huge cemetery. We’d sit on a rock and feed the ducks and hissing geese. We had been plenty of times before, but he finally hit the right age and began to wonder. On the drive out one day he suddenly looked around and asked me,
“What is this place?”
“It’s a cemetery.”
“What’s a cemetery?”
“It’s a place where people are buried after they die.”
“People die when their bodies get worn out from being old or very sick,” I responded as calmly as I could, keeping in mind that I was conversing with someone else’s child. He was spot-on with his three-year-old persistence.
“They die and go under the ground?”
“Some people do, yes.”
“What happens after that?”
The ultimate question.
“People have lots of different ideas about that. But no one really knows.” He thought about this for a moment while I held my breath and waited.
“I guess it’s just a mystery,” he said brightly.
Indeed, it is the biggest mystery of them all.
Sarah MacLaughlin is a social worker and a human development nerd. She helps parents (and others who interact with children) show up authentically and model great communication skills and emotional intelligence. Sarah is writing her second book, Raising Humans With Heart: Not a How-To Manual, and it’s now available for preorder for a limited time. Because it’s the good news AND the bad news that kids are always watching us. Let’s focus on what’s important: who WE are and how that affects our relationships with children.
I started this blog post last Monday. The days since then have been full of physical therapy, speech therapy, occupational therapy, art therapy, lymphedema therapy…you get the point. By the time the day’s appointments are over, my brain is tired so finishing the post was hard. But, I’m learning to be ok with things taking longer than they used to. So, here’s the blog I started, now finished.
If you follow @MugUpMermaid on Instagram, you may have seen I often include the hashtag, “#allvictoriesmatter”. Well, I’m claiming making cookies last week as a victory. The victory isn’t that I only ate one cookie while making them (that’s true). The victory isn’t that I could do the recipe from memory (mostly true and a good step in my neuro cognitive rehab). The victory is that I was able to stand up for about 2 hours to make them. Without a break. Cookies are therapy!
Victory? Yes. Since I broke my ankle (in three places aka “trimalleolar fracture”) I haven’t been able to stand very long. I’m in a walking cast/boot now and moving around better – barely using a cane and even able to stand a bit in my bare feet. Hopefully I can get my toes in the sand at the beach real soon and get back to being able to drive.
I really wanted to make the cookies as a thank you gift and I finally felt strong enough to tackle the project. I’ve been blessed by so many “cheer up” gifts in the past year that it felt so good to make something to thank a group of people I’ve missed since I broke my ankle – the women in my Tuesday night yoga class for cancer survivors. So, besides making the cookies, I got to deliver the cookies and go to my first yoga class since March. I had to use a chair and got help with modifications from the instructor, but it was another victory. I got to MOVE!
I love that pile of cookies. It represents a quantifiable result that was so satisfying. Sharing the cookies as a thank you felt more like my “normal” self. Being able to make the cookies and go to that yoga class was a victory that mattered to me… it was encouragement wrapped in love, steeped in healing.
All victories matter. Even short blog posts that take a long time to finish…
Until next time,
~Mug Up Mermaid
(PS – I’ve already started the next blog post – let’s see how long it takes to finish this one…it’s about MASKS and I’m hoping to finish it in time for my one-year anniversary of my double mastectomy on 6/1.)
Update: I feel like I owe my regular Mug Uppers a blog post on what happened since I last wrote here, but I have other things I’d rather share right now. So the BRIEF update is that breaking my ankle in three places was about as far from my neuro oncologist’s plan for my medical leave to “rest my brain from the effects of chemo” and work on a “neuro cognitive rehab” plan as you can imagine. So, a lot has been going on since that day I fell and I’m working my way back to mobility, balance, driving, and building my “cognitive load” while also learning how to deal with anxiety, depression and PTSD. It’s a lot to work on at once.
If all goes well, I hope to be back to work in about two months. That’s about all I feel like saying for an update right now other than to assure you I am getting better. Some days really do still suck but I know my tribe of family, friends, medical trusted ones and my church all have my back. There have been a lot of changes, but one thing has remained true – I love and crave authentic voices. So, with that, a bit about today’s Guest Mug Up.
This Mug Upper is the sister of a friend of mine. Her name is Jan and she owns a Pilates Studio in Brooklyn, NY. Jan was diagnosed with breast cancer in 2012. Motivated by her own rehab process and a desire to work with other individuals with breast cancer, she recently became certified as a Breast Cancer Exercise Specialist through the Pink Ribbon Program™.
Recently I asked my tribe if anyone had connections to help me secure 40 journals and pens for an upcoming woman’s breast cancer retreat. The response was actually rather overwhelming – donations from new friends and old. In particular, Jan’s sister, my friend Dywer, sent me an Amazon link and offered to buy journals in honor of her sister and she sent me Jan’s blog so I’d understand why. I read Jan’s blog and immediately asked if she’d let me use her blog as a guest post. And here we are today…
I wrote to Jan and asked her what we’d have if we were to Mug Up together and I loved her reply. “My mug up or beverage of choice is always coffee, excessive amounts”!
So, here is today’s guest Mug Up – “It’s Cancer, Deal!” by Jan Leahy
I thought I had a cancer a million times before I actually got cancer.
I am a worst case scenario kind of girl. I like to lay my scenario on a friend (not a new friend, that would be risky), come up with the triage plan, and then treat myself to an evening of Netflix and raw cookie dough in celebration of another, not really close, call averted.
Here’s a typical meltdown:
“Gigi, I have a serious, came out of nowhere, bump on my arm. It is more like a tumor, really, with all the symptoms of cancer. It is kind of growing as I speak, all spikey and asymmetrical. My nodes feel swollen. Where do you go to confirm arm cancer? Is there an arm cancer? Am I the first? How shitty is it that I have cancer of the arm and no one has any experience dealing with it? Why live in New York if we can’t muster up an arm cancer specialist at Sloane?”
Then Gigi will remind me I tripped over my dog’s leash and fell on my arm last week.
I am relieved.
Relieved enough to celebrate with cupcakes and feel rewarded for a whole five congratulatory minutes before the self-loathing kicks in.
When I found a rash on my nipple, and it migrated a bit, I saw my dermatologist, aired out the skin cancer scenario with a few key friends and started making the cookie dough.
Instead, I was told I had breast cancer.
I had grossly under-diagnosed for the first time in my life. How does a nipple rash jump to breast cancer?
It does if it is Paget’s Disease. According to the National Cancer Institute, by the time the rash shows up, there is usually an invasive tumor inside the breast.
As it turns out the Paget’s cells making up the rash on my nipple were ductal carcinoma in situ (DCIS – not the television show). This means the cancer cells were contained in this one area.
Oncologists like to call DCIS “pre-cancer.” My oncologist compared it to a bank robbery. The robbers have got the Halloween masks and cased the joint, but they were stopped at the front door by the police.
Whatever. I ended up having a mastectomy, so I feel like the robbers got into the bank, had a dance party in the vault and shook down bystanders for loose change.
I had two options for treatment:
A lumpectomy, which would take the nipple and the areola and seven weeks of daily radiation in case there was post-surgical cancer inside the breast.
A mastectomy with likely no radiation to follow up.
Going to Manhattan 5 times a week for 7 weeks seemed like a huge pain in the ass. I had spent most of my Brooklyn life avoiding Manhattan, except for seeing my sister and getting Nespresso pods. Decision made.
Choosing a mastectomy meant reconstruction.
In fact, I do not remember NOT reconstructing ever being discussed as an option. I remember mastectomy and reconstruction being billed as a pair, taking X amount of time for surgery, X amount of time to put in a spacer, X amount of time to expand the spacer, X amount of time to replace the spacer with an implant, X amount of time to heal, X amount of time until the implant has to be replaced.
I remember thinking I could have another child before I get a less than an A cup replacement.
Paget’s Disease rarely occurs in the second breast, so I really only had to contend with reconstructing one breast. I spent an afternoon flipping through albums at my plastic surgeon’s. Getting a matching pair seemed to me an impossibility.
And so it was clear for me. Mastectomy, no reconstruction, back to life as I know it, a cancer blip on the big screen of life.
People asked me repeatedly why I chose not to reconstruct, so I needed a backstory.
I spent a lot of time contemplating: what do I care about on my body that would be hard to let go off?
I could cut my hair off, but it would grow back.
I could get rid of my wrinkles, but I like the life that earned them.
I could whiten my teeth, but I am the most caffeinated person I know, so one week of coffee later, and what was the point?
But if you took six inches off my height, I would take you outside and put you down like Old Yeller.
In other words, being shorter would make me feel like something had been taken from me. The amount of space I occupy in the world would change, and I wanted all of my space.
To prep for the actual surgery, I read a lot of books and was fixated on the words they used to describe it.
Peel. Tunnel. Harvest.
Okay, peel skin, peel an apple, peel an onion to reveal the many layers underneath. Tunneling could be adorable if you imagined your beagles tunneling under the covers at night. But harvest kept bringing up images of my surgeon as an alien, with fingers ending in scalpels, poking, lifting, flapping my skin and muscle, harvesting what he could to study and destroy the human race…
I popped a Xanax while waiting for the surgery.
I was pretty sure it wasn’t working. I was called to a consultation room where my breast surgeon was waiting. He asked me my name and my birthday, as if he hadn’t held my hand or fondled my breast every visit. I believe I said, “Are you fucking kidding me?”
He responded in a very leading-the-witness kind of way: “You are here to have a single breast mastectomy, without reconstruction, is that correct?”
I said “Yes.”
He said: “Which breast?”
I replied “Seriously?” It occurred to me when I said “Seriously?’ that I sounded exactly like my three-year old son when informed by my ex that some day, very soon, he would be responsible for wiping his own ass. Seriously?
It was a tough call between “are the nodes clean?” and “is there any coffee?” when I woke up from surgery, but I went with the nodes. And then a celebratory coffee. I then fixated on getting ahead of the pain which had been suggested more than once. I pounded a pre-emptive Vicodin like a professional junkie.
For some reason, I kept imagining a hole where my breast was instead of a flat surface. I remember the surgeon saying I wouldn’t have cleavage anymore and me thinking, “of course I will.” It is not really conceivable until you have seen it, and even then, I could not get it straight in my head.
I might have spent some time in a Vicodin haze looking for my cleavage.
Probably harvested and on the mothership by then.
I did not look at the scar for a while. I am a firm believer if you can’t see it, you were not meant to.
It helped that the scar was covered with cornrows of tape. The edges of it looked red and pissed. And big. It ran from what was my cleavage into my armpit.
I had seen the scar left on reconstructed chests before, and those were much smaller. Everyone was commenting about what a great job my surgeon had done, but I was thinking he cut himself a big fucking window to get out the tiniest breast ever.
When you reconstruct, you try to save as much skin as possible. If you are not reconstructing, the excess skin is trimmed so the ends come together “tidily.” It looked like something had ripped itself out of my chest, and the doctor spent as much time wrestling with my alien breast baby, as he did taping the gaping hole left behind.
This is the part where I am supposed to tell you that I have no regrets about not reconstructing.
I don’t. Seriously.
Especially because five years later, I got the most beautiful tattoo that I have ever seen. But that’s a story for another day.
My cancer could have gone a different route entirely, with a much worse outcome. I know, because I saw it play out less than 4 years later with my sister Donna.
I rarely think about the day I was told I had breast cancer. It is not even in my top 10 worst days.
I do think about that day in the waiting room before surgery. I wanted 3 people with me: my sister Donna, my ex, and my best friend Kelly. One of them died, one of them left, and one of them moved. Perspective is everything.
I am just glad I had them all together in that moment, whatever the reason. If I had to do it again, I would definitely have a least two of them with me.
Shit happens. I accept it with resignation some days and futile protest others.
Not reconstructing dovetailed seamlessly with all the other life lessons Donna taught me.
If you don’t want to spend months warming up your child’s milk, don’t do it the first time.
If you have no staying power and commitment issues, don’t change your hair color.
If the guy you’re dating says he doesn’t want to be in a serious relationship, believe him.
If you like having the bed to yourself, go to your kids’ rooms when they have nightmares and crate train that whiny puppy.
If you do not want cancer to define you, figure out what does, and move on. More shit is coming.
Henry Street Pilates
5 days after my last blog post, I broke my leg in three places. Really. I fell on black ice. After trying to save a lost dog. And a police office drove right by me. Really.
So. I’m working on so many things to get better. And crying. And sweating. And praying. And being wrapped in love in so many ways. Soon I hope to be playing In AZ thanks to my tribe of friends (another blog for another day). I still believe in “effort” = “result”. It’s just taking even more sweat and love and patience and grace.
If you followed this blog BC (before cancer) you know I was just trying to get used to people reading my writing as I worked on a side project of writing a book. Since I was 8 years old, I’ve wanted to be a writer. I even won a writing contest and got to meet William Armstrong.
I continued to write over the years, but starting the blog was a bold step. At first, I think I had a total of 3 followers, which was great. I wasn’t really ready to have people read my thoughts, but something was telling me it was time. Then, BOOM. Cancer. My plans changed. Cancer has a way of shoving your plans right out the window. On the day of my diagnosis, my blog changed. My voice changed. I found myself having a lot to say and curiously, more than 3 people wanted to listen.
Mostly, I knew from day one that I would only be able to be authentic, even when it got ugly. I didn’t know how ugly it would get for me. Initially I did not know anyone my age that had gone through breast cancer. As I got to know other “breast sisters”, I found that when we were together, our voices were honest, pure, authentic and clear. Publicly we all put on a brave face and try to live up to the impossible standard of being “warriors” or “thrivers” or “survivors” or whatever the PC cancer label is du jour. But the truth is, beast mode looks different for all of us. And there is much you don’t see.
As of earlier this week, I am back out on medical leave. It was a hard decision to make as I wanted to power through and just put cancer behind me. I had just spent two months diving back into complicated work projects and reconnecting with colleagues. It felt good to be back until it wasn’t. I have been diagnosed with a host of neuro cognitive issues that are related to the chemotherapy and probably my autoimmune disease and other spine issues. Flat out, my brain is not working as it once did and to say I have “chemo brain” feels like a punch line and not a realistic portrait of what is going on… I have significant deficits in areas of my brain that are scary. I’ve had a car accident, falls/trips almost everyday (including hitting my head) and anxiety that makes me want to crawl into a ball. The psychological damage has been building. My inability to read, process information, organize, recall conversations, make decisions and calculate numbers were all interfering with my ability to do my job well.
Going back out on medical leave has given me a new job. To heal. Or, as my favorite doctor and friend reminded me, this cancer journey is not a sprint…it is a marathon. Shit. I guess I am actually doing a f*cking marathon. But not with sneakers on. Today I’m wearing slippers. Maybe tomorrow I’ll wear sneakers or LL Bean boots…or cowboy boots if I feel like kicking ass. Point is, I get to choose and as much as people want me to be the strong cancer warrior, my strength comes in a different form that you might not see right now. My strength right now is focused on taking the time to heal my whole person. Maybe down the road I’ll get the bug to do a road race or a triathlon, but for today, my marathon is getting my brain re-trained, healing the trauma my body and mind experienced and speaking up for what I need. Even if it is just rest.
I don’t write this for sympathy. I write to be honest and not being willing to contribute to the “Be Positive and Wear Pink!” cancer culture that often doesn’t feel authentic. Platitudes and pressures abound and even though I put on a happy face in pictures during chemo, hair loss and trying to go back to work, my loved ones could see what was really going on. Just look at my eyes. Media and cultural stereotypes of the breast cancer warrior/survivor who is conquering literal mountains, while well intentioned (maybe), can make the person who isn’t feeling strong enough or positive enough or planning to run a marathon feel like they are not “doing cancer right”. Well, I call bullshit.
As I was finishing chemo, I met a woman who was a few months ahead of me in her recovery. We are the same age and both have high level professional jobs. Something she said to me has just stuck with me and was one of the most honest things I’ve heard since I was diagnosed. She said when she was diagnosed, her first thought was, “F*ck! Do I have to do a triathlon now?” Right? Everywhere you look there are women who work through chemo and radiation, they climb Mt. Kilimanjaro and begin to run marathons and never take a day off from work. And then there are everyone else. Including me. And that is ok.
I decided to reframe how I think about my marathon. Some days my marathon training has been organizing a drawer in less than 8 hours or working for 4 hours and going home and not collapsing in a puddle of tears and frustration or going to the grocery store and not needing to take anxiety medications. Now, being on medical leave, my training will be full of more medical appointments, therapy, yoga, massage, going to the gym and adjustments to medication so that I can return to work soon. I hope to write but some days that is too difficult. And yet, I’m determined that the marathon training will include joy. Time with family. Time with loved ones. Time to appreciate the change of season and the approaching anniversary of my diagnosis. I am making it through. I’ll cheer you on if you are doing an actual marathon or triathlon and I know you’ll cheer me on as I take this time to heal. With love, Julie Ann aka Mug Up Mermaid
*I am still accepting guest bloggers – no topic assignment other than authenticity!
~Mug Up Mermaid
“Under all that charred wreckage was the heartwood. Bruised. Scarred. But still good. Still capable of growth. ” Gwen Mitchell, Rain of Ash