Just Keep Swimming

just keep swimming

Chemo brain struck again. Yes, chemo brain is a real thing and I have been adjusting to this new reality. I forget things. I walk into rooms and can’t remember why I am there. Conversations apparently get repeated. Too many people talking confuse me. Usually I can shrug it off. Sometimes I get really frustrated or down about it and sometimes I laugh. This week, chemo brain made me laugh again. This time, it was about my underwear. On Tuesday, my underwear felt strange, but then again, pretty much everything on my body feels strange these days. So, I just tried not to think about it and figured it was just one of those weird texture things that happens to me that has been known to make me change my clothes 6, 7, 8 times until they “feel right” and this has gotten worse with each chemo treatment. My skin feels strange… very dry and papery and it cuts and bruises easy. I have to be careful with how tight things are on my surgical arm due to lymphodema (another fun side effect…). I like being in soft clothes. But Tuesday, I had things I wanted to do so I , I just kept “swimming” like Dory. Until I got undressed. The strange feeling was my own doing and because I was stubborn and didn’t try to make it feel better, I spent the entire day with my underwear on backwards. Yup. Good going, Julie Ann. Thank you chemo brain.

It’s so easy to question everything about how my body feels. The chemo brain side effects have me doubting seemingly normal things. Or not doubting when I should. At least it was good for a laugh when there haven’t been enough funny moments in the past few months. So if you see me out and about and my shirt is on backwards or my shoes don’t match or I seem confused, please just tell me to “Keep Swimming”… it’ll be our secret.

Percolating…

PercolatorA new Mug Up has been percolating for almost a month. I think I started it right after my 2nd chemo treatment, but the draft has been lost. Or I didn’t save it. Or I created it in my sleep. I blame chemo brain for not knowing where it is. Yes, chemo brain is a real thing. Julie Ann doesn’t feel the need to explain the lack of a blog post in more than a month, but Julie has been thinking about the post as it percolates, seemingly too long. So, while it continues to percolate, a brief update…

 

Murphy

Chemo #3 is tomorrow. Besides chemo brain, chemo fatigue has taken control. It is a tired feeling from the inside and makes your limbs feel heavy. Not just like you didn’t have enough sleep, but a deep, gnawing exhaustion that makes even getting up off the couch feel like exercise. I can manage about one “thing” a day. Work, church, a meal out or a visit with a friend, a ride to Dairy Queen or the beach with Tom. That’s about it and then I can barely move. I’m trying to push through it as best as I can, but some days the big accomplishment is finishing a chapter in whatever book I’m reading or doing the dishes. And that is ok. I’m percolating.

I’m percolating and the chemo has slowed down the process a bit. I know the cup of coffee will be brewed just right at the end.

~Mug Up Mermaid

 

 

Hot Stuff

Queen Anne's Lace

I felt well enough this morning to go for a walk with Tom and one of the dogs. Knowing we would walk by the market and that we were out of coffee and cream, I grabbed my money and a light reusable grocery bag and headed out. Yesterday we had crazy storms and rain, but today the sky was clear and a nice breeze blew the raindrops off the leaves of the trees onto my skin. Delicious. The simple actions of being able to go for a walk, smelling roses mixed with low tide and seeing the new crop of Queen Anne’s Lace along the creek bed were blessings I did not know I craved.

And then…

We did the usual loop that takes us by the harbor full of boats, then by my church and library, and finally we were at the little market.look up I popped in to get the coffee and cream and placing them in my bag, joined Tom and the dog for the walk home.

A few minutes later I noticed how good the cold pint of cream felt leaning against my hip through the bag and told Tom it almost felt like an ice pack (one of my recent bff’s with the awful bone pain from chemo). Then, this made the walk even better… Tom said, “Watch out you don’t melt it. You’re hot stuff, you know.” I smiled the rest of the way home. Really smiled. Despite all the changes my body is going through, my man still thinks I’m hot. OK, I know it’s shallow and certainly not solving world peace or even my cancer, but the endorphins that were released from all that smiling must count for something. Mostly, I’m just reminded once again how good it is to have someone who loves me just as I am and makes me smile every day.

My hope for each person reading this blog is that you have someone in your life that makes you smile. Really smile. A smile that lasts for several blocks of a walk. And just in case no one has told you recently, YOU are hot. SMILE!

~Mug Up Mermaid

 

 

Magic Potion or Malicious Poison?

Cheerios 2

I have three new blog posts almost finished. They have sat with me for a few days and I thought one might get finished today. They just need a nice pretty bow to wrap them up. Nope. I don’t have it in me today to attempt witty observations or share funny cancer stories (yes, they do exist). All I can think about today is that tomorrow is my last day without chemo in my body. I don’t even like how my body feels when I have too much caffeine, sugar or alcohol, and usually, those choices for me are combined with fun. Putting chemo in my body is not fun. Earlier this week I kept trying to re-frame the thought of chemo entering all my cells by calling it “magic potion”.  I know…my “glass is half-full” personality at its normal state can be annoying. But for those who are annoyed by sunny dispositions, don’t worry. Julie Ann is back. Tonight, I’m convinced chemo is a malicious poison and not a magic potion at all.

It all started this morning with a bowl of Cheerios, bananas and almond milk. Yes, benign Cheerios. Julie likes Cheerios and even their name. After what happened, this morning, Julie Ann says F*** Cheerios and their stupid name that doesn’t live up to expectations because after I ate, my stomach was upset. That never happens with Cheerios. Suddenly my eyes welled up and before I knew it, I was crying and couldn’t catch my breath. While Tom held me and tried to figure out what the hell was wrong, I squeaked out that if simple Cheerios made me sick to my stomach, how the hell would I handle chemo?

So, this is the raw truth for today. Instead of finishing the “fun” blogs about showers, bras, wigs, swimming again and deodorant (really – they are fun!) I feel I need to honor where I am today. Cancer flat out sucks and lest anyone think that a naturally positive person approaches cancer with all smiles and confidence, Julie Ann reminded me to let you know the real truth. I’m scared of how my body will feel with not only the chemo in my body but also the steroids that I have to take the day before, day of and day after chemo. I’ve had scary experiences with steroids in the past. I’m scared some cancer cells will not get captured and destroyed. I’m scared that despite all the assurances from doctors, nurses, friends and loved ones, my nausea will TAKE ME OUT. I’m scared the scars will not heal – both physically and mentally. I’m scared about going back to work with no hair. I’m scared I’ll miss yet another summer of fun activities. My mind goes to dark places and sometimes having to put on a smile and answer the question that always gets asked with a head tilt, “How are you?” is more than I can handle. I can rally for small moments, but in truth, I feel like an imposter more times than not when I put on the “brave” and “PMA” (positive mental attitude) face.

I want to cry, kick and scream more than you’d believe if you know me. Even when I pray. Maybe especially when I pray.

Tomorrow brings more blood work and if all is well, chemo starts on Tuesday morning. I still have another day to re-frame my thoughts about chemo and maybe I’ll believe it is a magic potion again that will bring amazing powers and love, light and all things unicorns and rainbows. Right now, it is a malicious poison that I did not ask to drink and I think some witch is trying to turn me into something unrecognizable.

A friend sent me a message earlier in the week that I keep thinking about. Last year, his wife has gone through a similar diagnosis, surgery and treatment plan and I had reached out to him even though it had been years since we had spoken. I just wanted to connect with someone who knew what I was going through and about to step into with this next phase.

In his message back to me, he was clearly writing to Julie Ann and it was exactly what I needed to hear. He said, “There are no kinder words regarding cancer than it sucks. No way to candy-coat the situation.” Truth. And then a few messages later he said, “…and I won’t call you brave, you are strong.” I can do it

The being called brave thing has bugged me since the beginning of my diagnosis and having someone recognize the annoying label of “brave” – as if we choose it,  and re-frame it to “strong”, well, that does give me a glimmer of hope that both Julie and Julie Ann will soon be happy to get through the magic potion phase of cancer. I think I can do this. Anyone have a magic wand?

~Mug Up Mermaid

Introducing Julie Ann

Julie Ann

Let me introduce you to my new friend. I kind of like her. Her name is Julie Ann. Watch out. She speaks her mind. She’s fierce and focused. She definitely does not have “Geneva” as one of her nicknames. Oh wait, Julie Ann wouldn’t want me to waste time telling you she speaks her mind. She doesn’t really care if you care. So pour your coffee (or Julie Ann suggests whiskey or tequila…) for this Mug Up. First, a little background…

 

My middle name is Ann, but I have always liked it when people called me by my full name, Julie Ann. When I was little, my parents had one friend who Juliealways called me “Julie Ann”.  It never failed to catch my attention. Like did she she recognize something in 10 year old me that all the others didn’t see? While maybe Julie was playful and went along with the flow, read Trixie Belden books and Tiger Beat magazines and did what was expected, maybe Julie Ann challenged authority, took the lead to get others interested in things no one else did in the neighborhood, read more serious books and of course, was able to kick ass?

Enter cancer. From the first time I went to the hospital for the mammogram that lead to my cancer diagnosis, everyone there called me Julie Ann. I corrected them at first, but then, I decided I liked it and started saying my name as “Julie Ann” when asked. So much has changed in my life since Diagnosis Day…changes I had no control over. By claiming “Julie Ann” as my name, a bit of control comes back each time I hear it said. And with that, came a sense of letting down the walls of politeness and I began really saying what I needed and didn’t need. Yet at the same time, I put up some barriers around who I spend my time with, and where I choose to be. This has made my immediate world a bit smaller right now, but it feels right. MurphyAnd when that changes back, Julie will want to throw her arms around you and give you a big hug and go out for a drink and hear all about your sister’s husband’s great aunt that had cancer. Right now, it doesn’t help. Certainly there is a down side to this no-bullshit Julie Ann – just ask my sister Jody how I spoke to the nurses when I was readmitted after my double mastectomy. I’m pretty sure Julie would send flowers. Or chocolate. Or wine… Julie Ann says they’ll get over it.

But guess what, just because I have cancer and I’ve reclaimed this “voice”, I’m still Julie, too. I am playful. Just ask my dogs and read through some of my text threads with certain friends and family. I still read “light” books mixed with “serious” reading. Currently in the rotation are Andy Cohen’s “Most Talkative – Stories from the Front Line of Pop Culture”, “A Gentleman in Moscow” by Amor Towles (Jim – I’m almost done!), an assortment of beach reads by Kristin Hannah and Nadia Bolz-Weber’s “Pastrix – the Cranky, Beautiful Faith of a Sinner and a Saint”.

I still can go with the flow, but more and more it is when I chose to. And as for doing what is expected of me, well, Julie Ann (or maybe that is cancer itself?) might be overpowering that part, but sometimes I still hold my breath a bit when I start questioning what people will think if I tell them how I think. Honestly, doing what was expected of me still got me cancer. So what do I have to lose? Really though, when you are facing cancer, doing what is expected of you feels pointless. And not authentic. Neither Julie or Julie Ann have time to live that kind of life.

Authenticity

Julie has been working on her next blog entry and you’ll see the more expected celebrations of small victories and appreciation for the graces that are WITHOUT A DOUBT, in abundance all surrounding this journey. Julie is warning you though, one of these days the blog will be taken over by Julie Ann. When that happens, you might want to hang on and pour a double.  She has a lot to say…

~Mug Up Mermaid

 

 

Things Cancer Gave Me

ending

When I started this blog in January, it was to help me get used to people reading my writing. I always loved the phrase “a mug up” (more info about the phrase on the blog’s homepage…) to describe a time to connect with friends, co-workers, strangers and I thought a blog would be a good electronic way to mug up and also practice letting people read what I wanted to write. I shyly told a few people and pretended that someday I’d have something interesting enough to write that the # of readers would magically increase. And then cancer happened.

Writing about my cancer journey here was initially just an easier way to share information without having to keep telling the “cancer story” over and over in person. I adopted the first blog on cancer from my Facebook post and then decided it was better to just use the blog format to share my thoughts. Surely, cancer is taking much away from me, but apparently cancer gave me something interesting to write about and people are reading and asking when my next post will go up. I’m getting used to people reading my writing. So tonight, as I get ready for tomorrow’s double mastectomy and all that follows, I’m feeling grateful for the blessings, yes the blessings that cancer has already given me.

Cancer has given me…

…a man who doesn’t care that my physical body is changing. Tom just wants me alive. The ways he has shown me real love would astound you. Not me. His love is constant and cancer didn’t take that away. It just multiplied.

…a kick ass short hair cut (nephew approved) to feel powerful before I lose it to chemo.  Deb was able to save 11″ for me to donate and she so lovingly helped me feel ok about the next steps.

hair

…sisters and brothers by blood and by choice who have showered me with love, laughter (goose shit!) prayers, mug ups and lunches, gifts, scripture, hugs, permission to cry and swear…and a few (ok maybe more than a few) glasses of prosecco.

prosecco

…time to enjoy more sunsets and NOT from my car window on my way home from work but sitting quietly at the ocean, on the lake, in my yard, out at the pier…having time to stop and enjoy God’s evening art show is always a gift, but right now, it is a balm for my soul.

sunset

…caring doctors, nurses, counselors and pastors who go above and beyond and even share their cell phone and home emails.

…a support group of other survivors who answer my questions, check in on me, give me good tips and always know exactly what to say.

…a recently diagnosed friend to go through this together with – we are not alone in this journey and can uniquely understand each other’s challenges of trying to work through breast cancer treatment, which will surely include humor, shopping for wigs and hats and eating chocolate whenever we feel like it!

…hearing from far away friends and family at always JUST THE RIGHT MOMENT!

…space to be alone when I needed to be quiet and not busy with everyday life. I’ve had more than a few days of not leaving my home and tightening my circle. People have stood by me with this desire and respected my need for less, not more.

lonely girl

…having the initial surgery date delayed by two weeks while I recovered from bronchitis. This allowed me to really rest my body and mind in preparation for tomorrow. I am at peace.

And yet with these positive things that cancer has given me, it has also given me dark times full of fear, sadness and yes, even anger. Being a naturally positive person, this “gift” from cancer took some “learning”, but from it, there is a deep satisfied feeling of authenticity… and maybe a few more interesting things to write about on the other side of the surgery.

So, surgery tomorrow. My sister or Tom or Lisa will keep people updated as able.  I probably will be offline for a bit. Chemo starts in about 4 weeks. I wonder what cancer will be bringing in the days ahead. I’m embracing it with as much “kick ass” attitude I can and with a little dose of Joshua 1:9 and appreciation that you have to be careful what you wish for.  I wanted to write and have people read my blog.  Cancer gave me that, and that is ok.  It is well with my soul.

joshu

~Mug Up Mermaid

Counting Things or Things that Count?

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If you know me fairly well, you know that I don’t pay much attention to #’s or rather, I just don’t retain actual #’s such as years, ages, weights or miles. I used to say I didn’t like math, but that isn’t really true. I do like math, I just don’t retain anything numerical. Never have. I can’t tell you what I paid for my car even though I make the same car payment every month. I never remember how old people are – I have even messed up my own age.

Since I was diagnosed with breast cancer (36 days ago), I seem to be obsessed with counting things. I think that is how my brain is telling me this is real and I keep thinking these numbers will add up to mean something. I once read about a tradition of counting crows – people would count the crows in the sky and the # would mean something like one crow was bad luck, two were good luck, three were a wedding and so on. So since I realized I’m counting things, instead of counting crows, here’s my list of counting cancer things.

Counting Things…

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# of medical appointments where my “girls” weren’t touched since diagnosis on April 4, 2018: 4

# of medical appointments since diagnosis: 26

# of caregivers with nose rings: 2

…If I get to 12, that’s my sign to get one. Why 12? If you know me well, you know why.

# of mammograms, ultrasounds and MRI’s since March 28th: 12+

# of biopsies: 3

# of people who told me they scheduled their mammograms after hearing about my diagnosis: 2

…If you are reading this and are in the age group where you need a mammogram and you are overdue, please stop reading this and schedule your mammogram NOW.  Please.

# of minutes spent in waiting rooms in Maine doctor offices: always less than 10 minutes, usually less than 5

# of minutes waiting in waiting rooms at Dana Farber on just one visit: 120+

# of doctors that are on my care team: 8

# of doctors who say I am “young”: 8

…working on a college campus never makes me feel young…hearing it over and over is nice in a weird way.

# days until surgery: 8

# of bras I won’t need after surgery: 15+

…they just won’t fit after my double mastectomy and reconstruction. The lemonade is the new “girls” will get to go shopping for the cute bras they never had in their old size. Same for a lot of my dresses, bathing suits, regular suits, shirts…I guess a shopping trip will be something to look forward to!

Things that Count…

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# of hugs from people I have never hugged before: at least 2 a day since diagnosis

# of doctor appointments I have attended alone: 0

my team of Jody, Priscilla, Elaine, Lisa and Tom have made it so I always have someone with me at every medical appointment, even when they were scheduled with almost zero notice.

# of times a doctor or nurse has cried with me: 5

# of times Tom has held me while I sobbed and just lost my shit: countless
# of cards, texts, calls, emails, fun deliveries at home and work, and messages on Facebook: countless
# of times people have told me they love me, that they are praying for me, that they will help in anyway I need: countless
# of ways I know I am blessed even with a cancer diagnosis: countless

“Not everything that can be counted counts.  Not everything that counts can be counted.” (Albert Einstein)

~Mug Up Mermaid

Other Kinds of Supports Besides Bras

Support tea

After meeting with a genetic specialist and having another biopsy today (now on the other side…) and after a hard day yesterday spent with the breast surgeon and oncologist, I sat down tonight to a lovely cup of “Tulsi Spiced Berry Immune Support Tea” in a china cup my family members will recognize. On the box the tea came in, it says “SUPPORT” right on the label. One of my sisters gave me this tea to help build up my immune system ahead of surgery. I love the tea bag wisdom for this cup: “Grace is kindness, compassion and caring”. Despite my fears, anger, sadness and anxiety, I am aware of the grace that surrounds me.

I am overwhelmed with the kindness, compassion and caring of the people in my life who want to do something. The support I have from my loved ones, friends, church and work colleagues (far and wide) astounds me. I do not know yet what the surgery and follow up treatments will entail or if I will ever need a bra to support “the girls” again (not necessarily a bad thing in my book – a story for another day) but the SUPPORT I currently need is being provided in abundance and it is surprising me hour by hour.

Support has come in the form of quiet touches at just the right moment, kisses and hugs…including from my dogs.

Support comes with each text, voicemail, poem, email, picture, Facebook/Instagram message that comes through at all hours of the day and night and it even comes with silly glitter beer videos on Facebook (they exist!).

Support comes with flowers, cards, meals, and coffees delivered to my door. Support comes from the kindness of co-workers who are helping me with meetings and deadlines. Support comes from people willing to walk every step of this with me, even when it is hard and messy. It comes from the nurses and technicians that I’m already on a first name basis with. Surely it comes from all the prayers that I do not even know about.

Tissues magically appear when I need them. My house and car is cleaned. I’m driven to doctor appointments and I never have to sit alone in a waiting room or in an exam room. No phone call ends without “I love you”.  Even my dogs seem to snuggle me more.

All this support is holding me and “the girls” up… and we thank you.

…Who needs a bra?

 

 

 

 

 

The Day After

Day After

All my life I have felt the most myself when I am in, on or near the water, preferably the ocean. I went there today so I could feel that peace and feel like myself on a day when I feel nothing like myself.

It is the day after.  It is the day after I was told “it is cancer”. With no history of it in my family, at 47 years old, I am now in a club I didn’t want to join. I have breast cancer.

It is the day after. There have been phone calls and texts, tears and lots of hugs. Telling people seems to be getting tougher as the reality sets in and as I absorb the loving reactions of those I have talked with. It is the day after and I am tired and this is just beginning.

But I want to tell you about the day of, the day I learned I have cancer. Just before I went to the hospital to get the results from my biopsies, I had a commitment to keep. I have been a reading volunteer in a Portland kindergarten class. The nurse had just called me before I walked into the school and I could tell from her voice that it was not good news. She wanted to see me right away. I told her I would come to the hospital after I finished reading to the class. I walked in the school with fear in my heart and feeling vulnerable. And then as I waited in the lobby, I felt a little tap on my leg. I turned and saw one of the little boys from the class. He said, “I remember you!” and before I knew it, I was being hugged. We walked into the classroom together and then I was overwhelmed with more hugs and big huge smiles.  And I forgot about my fears and the appointment to follow. I cannot explain how those three words soothed my fears. “I remember you.”

It is the day after. If I did not call or text you or come by to see you today to tell you in person, I want you to know that if we are “friends” here it is because I remember you. I will always be ready to give you a hug and will be happy to see you. I am just at the point where individual conversations about the diagnosis is too much. So I write because that is one way I feel like myself. Writing has always been how I process and as I have the energy that is what I will do.

It is the day after.  As I looked at the ocean earlier and then sat down to write this, I felt more like myself for a moment. We will see what tomorrow brings.

-Mug Up Mermaid

Staying in the Moment

I love being with people who say yes to coffee after a meal. Saying yes shows they aren’t in a hurry to go home or on to the next thing… it says they want more.  More conversation. More time together. More being in the moment. 

Sometimes at the end of a meal, I’m the one thinking about the next thing I’m planning on doing. When a friend says yes to coffee, it has a powerful way of catching my attention and redirecting my thoughts back to whom I am with.

Recently, I was with a group of girlfriends sitting at the Top of the East. We were enjoying a late lunch after seeing a show. Everyone had finished their meals and out over Casco Bay the sun was lowering in the sky. The early dinner crowd was coming in and I found myself thinking about the laundry at home and the twenty other things I wanted to get done. And then the waitress came back to clear our plates and asked if we wanted coffee or dessert. I was already digging out my wallet to pay and then…one friend said yes to coffee. And with a twinkle in her eye, not just coffee, but Irish coffee. All thoughts of that to do list went away and I found myself saying yes along with the others.

5 mugs

And just like that, I was not in a hurry. I sat back with gratitude for the friend who by saying yes to coffee, kept this circle of women together a bit longer. I realized that saying yes to the coffee also meant we were all saying yes to each other. We were saying:

Yes, you are important.

Yes, you make me laugh. 

Yes, you matter.

Yes, you are loved.

So, cheers to friends who say yes and remind us that staying in the moment matters. And a bit of Jameson doesn’t hurt either.