Words and Good Intentions

I got my cancer diagnosis on a Monday and we had told most people we needed to directly contact within a week. Oh how bad news brings out our most secret fears, desires and emotions! And with the powerlessness of it all... We want to say something, do something, do anything to make it better. But we are all just human - doing our best to understand ourselves and others. 

Most of our family and friends are very intuitive, kind and know us well enough to say the "right thing". As if the right thing or words can change my situation. But it's what we do and how we relate. 

I wish there was a better way to gain true empathy than going through the pain personally. Because I now know, only a few weeks into this diagnosis, that I didn't do enough for friends going through the same thing. I didn't understand the fear, the anxiety or the perpetual stress this causes. 

I'm getting better at sharing the news and not breaking down entirely. I'm getting better at receiving what others are able to give, even if it's nothing at all. I'm going to try and get better at communicating exactly what I need. 

I have included a link to an article breaking down some basic what to say and what NOT to say to a person who has been diagnosed with cancer, or with any illness really! It's pretty solid advice. And what's "right" for some might not be "right" for all. I may develop a better sense of humor about this later - but I'm not there yet! Nor am I ready to see any positive spin! 

https://www.roswellpark.org/cancertalk/201603/what-not-say-cancer-patient

A friend was so honest in her response that (1) she didn't know what to say or how to organize for this and (2) tried to tone down the toxic positivity/gratitude. That's all I need - honesty. I know we WANT to believe that all will work out and it will be fine... But it might not be! It might take a long time to feel normal and whole again. 

I'm hot and cold, angry and in disbelief and also very frustrated that every "anti cancer" dietary recommendation is basically what I already do. This is random and for whatever reason, my body failed to stop cancer from forming. 

BUT - every item that has been sent in the mail or kind message has been a life boat. From a simple "I love you" card to the f$&k cancer socks and tshirts, the craft projects, books, candy, stuffed animals, Miss Piggy shirt, quilt from a church ministry, healing jewelry, tangible advice, organic vitamins and personal medical experiences - I see all of you and our connection. I do appreciate it, even if it can't change the circumstances. We are surrounded by so many thoughtful, loving people. 

As for the medical update: 

This is hopefully our last weekend of waiting. I've had every scan and biopsy they've asked for. We know that I don't have any other masses in my body, but there are cancer cells detected in my lymph nodes on my right side. So when we say caught "in time" - we're right on the cusp. Chemotherapy is absolutely going to happen - I just don't know the duration and drug that will be chosen by my doctors. 

Good news is that I do not have the BRCA gene mutation, which is even better news for my children and my brother. Annoying news is that we don't know the WHY cancer decided to grow and was permitted to grow in my body. 

Things I Have Learned About Cancer

 The past couple of weeks have been a lot. 

 First, I learned that I have breast cancer. 

 My mammogram led to an ultrasound - then across the hall to the breast surgeon. Then a consult and biopsy on two lumps. Then a phone call with "results" that they wouldn't tell me over the phone. 

While I was waiting for those results - I found out that a dear member of my family was headed into surgery for a bilateral mastectomy due to a breast cancer diagnosis. Same age as me. This felt like a harbinger, and in fact, it was. A few days later in my doctors' office, I heard the words Invasive ductal carcinoma and was then ordering genetics tests and my brain started to blur. I didn't even ask for the biopsy pathology - at least not for a couple of days. 

Second, I have learned that no two cancers are the same. While it has become a bit of a universal experience to either have watched a friend or family go through the diagnosis or treatment, or to have experienced it yourself - each case is incredibly nuanced. That may seem like common sense to others, but I've learned a bit about genetics and hormone receptors and what types of cancers may need chemotherapy or not. 

Third, I have learned (or been reminded) that our connection to other people is everything. I have felt like mortality has slapped me in the face. My entire life is a sum of experiences, relationships and feelings towards and with other people. It's hard to describe how much more deeply I feel this. People show their real nature almost immediately when hearing difficult news - and I'm surrounded by a lot of amazing humans. (Some have also fallen into their predictable patterns and then I really can say, "Not even a cancer diagnosis will change this!") 

This blog, when I wrote regularly nearly ten years ago, was a source of creativity and posterity. A little bit of therapy too. It gets the words out of a swirling tornado in my head and satisfies my need to connect. If I can share what's going in my life and get some feedback or a shared experience out of it, that does wonders for my mental state. 

So while I need a place to share what sometimes might be lengthy information or not fun for social media - I didn't want to create a singular place for cancer updates. My ultimate hope is that this is a blip in a long life of experiences, and while I will always BE a person who has/had cancer - I will also continue to be more than that. 

So - what I do know as of March 4th, 2023 is that I have invasive ductal carcinoma in my right breast. Two tumors were found (or palpated by me if you want to be technical) initially and several more were found by breast MRI later. I've had a full body bone scan and chest/abdomen CT. It does NOT look like there is cancer anywhere else in the body. Yesterday I did have two more biopsies - one on my left breast that wouldn't be of any concern if I didn't already have cancer and one of the lymph nodes on my right side as a cautionary measure. 

I got my initial diagnosis from a private practice but here in Western NY, we have a very prominent cancer treatment center called Roswell. Within the first day of my diagnosis - as I was messaging friends - a doctor at Roswell was recommended at least four times. (And the online reviews of my current doctor confirmed what a friend said about her - hot & cold mood and unpredictable. Those aren't things you want when dealing with cancer.) 

As of today - we are pursuing treatment with Roswell. They are recommending chemotherapy first, which is not what I wanted to hear. I think our natural instinct is to get this stuff out of my body! Of course no one wants major reconstructive surgery but I was hoping for that instead of what might be a long length of time fighting this medically. Since my body has already failed to stop cancer from forming, there is the risk that I have pre-cancerous cells floating all through my body and the entire system needs to be shocked. I feel like this 42 year old baby still asking the grown ups what to do and where to turn and just give me more time to do everything. 

Fourth, I've learned that while people have nothing but good intentions - their words don't match what you need. Right now I'm letting all scenarios play out in my head. Negative, positive, catastrophic, realistic, unrealistic, funny, sad, ridiculous or dramatic. We just don't know what is going to happen. It's ok to also say I don't know WHAT to say or this sucks and I don't have a solution. All methods of coping are welcome - prayers, advice, sharing of your own experience, or even distraction. Maybe I'll adopt that positive mindset in a minute - but for now, I'm angry and frustrated. I don't believe there is a divine reason for everything. I think genetics mess with us and we have toxic chemicals in our air, water and food. While I think I can learn from any experience, I don't think I needed a lesson via cancer to value what's important or show love to my friends and family. It's a headache and a hurdle and will cause stress to me and my family. 

 Here we are in 2023 - with a blog that has now turned to Balancing on One Foot with cancer. 

Snowspective - WEATHER!!!

 Move to Buffalo, they said - it will be fun, they said! 

It's April 28th, 2022 and it was below freezing this morning. Snow on the soccer fields and frost on the car windshield. We've already had our first sunburns of the season. Flip flops are readily available but so are the winter coats and gloves. Luckily my phone tells me the outside temperature so I don't go skipping out into the biting winds in my yoga capris. 

One of my favorite clips from the more recent Muppet show is Animal having a conversation with a human, basically yelling, "Traffic! Weather! Traffic!!" - because that's basically what we do as adults. Complain about the weather (no matter what it is) and talk about driving in our vehicles. WEATHER! TRAFFIC! It's Cold! It's too hot. It rained. It was sunny, then it snowed. Then I made the mistake of putting away snow pants and now it's MY fault that the weather went to shit again. 

WEATHER! 

Now that you've thought about it, you'll never be able to un-think it when a coworker or your neighbor starts up the conversation with, "Oh, this weather is too much"... You'll hear Animal yelling WEATHER! WEATHER! in your head. 

 I know it's our need to bond or need something to say - but it really is pointless to complain. I know I hit my deepest/lowest spot (my winter nadir) in February. I knew a lot of people escaping to Florida. My work didn't have the traditional Feb week off and there were ice crystals on my kitchen windows. I fully felt sorry for myself, mostly because a vacation had been cancelled and I struggle not having something to look forward to. I willingly moved to Buffalo and love it 95% of the time, but there's always that moment where the weather (WEATHER!) feels like an icy cold hand touching the back of your neck. The day where it feels personal and you'll never ever see sunshine again. 

Fast forward a few months, and I somehow had the mental capacity to deal with this last winter punch in the face. As in, this better be the last of it. I was fortunate enough to take a warm vacation over spring break and even though I came home to sleet and snow (then sunshine and more snow) - I at least have a recent memory of sunglasses and sand on my feet. 

Plus I live with a toddler who is excited about the WEATHER! no matter what. So yesterday, when we awoke to snow and he excitedly yelled, "Look at the snow!" - it kind of takes the sting out of it. At least a little bit. 

A Goodbye Dream

 A friend who was part family, part me. I never texted to ask, "When's your flight? Lets make sure to get a drink together." Because you were going to be there, we WERE going to have a drink. You would already be in the kitchen, with a genuine smile on your face, ready to give me a huge, enveloping hug. The beginning of nearly every family function for the last twenty years - "Oh good, Luke's here!" I wish I paid more attention to the how and why you got there, got anywhere.

 We were both guests in that kitchen - it wasn't our home, we didn't grow up there. We met there more than other common places later in life. Earlier life it was in the halls of St. Stephen's or more specifically, the NARTHEX. Definitely had to look that up. The narthex of the Church, where parents took too long to say hello/goodbye and we were there in periphery. Or at the summer pool, both of us splashing with our age appropriate friends and waiting it out during adult swim. Probably for only one year in our lives, were we in the same school building. We rode in cars together, both catching rides home from my future husband and your loyal friend. 

 As if holidays weren't hard enough remembering those we can no longer celebrate with - this day last year was the last time I absently sent a stupid picture, a passing message to you. Last Thanksgiving was bland due to quarantine - but that doesn't mean we couldn't send dumb Snapchats right? Maybe we made you smile with our heads turned into dancing turkeys.

 And then you were gone. I remember reading the text and losing all strength in my legs. Knowing that I had to share the awful news. So in our close periphery, all of those moments we were in the same place at the same time, those times are over. I can't ever just assume to see you again. 

 Fast forward several weeks - of confusion, heartache, and what felt like crying in my sleep; I finally had a dream. You were in it and it felt like your goodbye. 

We showed up at this familiar house, our mutual family. It was a wedding of some sort and people were crowding the hallways, sitting room, talking... doing the scan of the room. Yep, there's Grandma, there's that family, that Uncle, those cousins you haven't seen since the last wedding. All smiles and settling in. We wave at each other because the hug will come later - when we've moved through the greetings. 

But THEN - there's a patriot in the crowd! It's time for the pledge of Allegiance! We all have that family member (or ten) that is unabashedly themselves, and not shy to do some strange things. That Uncle has called for all of us to stand up and say the pledge of Allegiance to our Nation's flag! For a brief second, our eyes met in the reflection of a mirror on the wall and your look said EVERYTHING that I was thinking. "Uhh, this is weird but I'm going to go along with it... hand over heart... haha 'Murica... why NOW?". In an instant, I was seen, understood and we knew we would laugh about it for years to come. 

And then I woke up. That was it. 

It's not as if I needed a story to explain what you meant to me - but this puts it all together in a neat little package. It really could have happened and in my humble opinion of how I wish the universe worked... it could still happen. I'll meet you again somewhere, in some life and we'll laugh at how strange other people are. 

Kismet at the Playground - A Motivational Monday Post

  This blog, however active I once was, has really fallen to the very tail end of priorities. It's not that I don't often sit and think about things I want to write... but things like showering, feeding my children, cleaning up after said children, working part-time as a sewing instructor, managing the demands of a VERY loud toddler, driving up and down Central Avenue, and the rare occurence of exercise... things like that tend to use my waking hours of the day and night. 

 This also is not a valid excuse for why I didn't revisit writing during the pandemic. For our family, it felt like we should have had extra time - but the ongoing virtual learning with anxiety, that didn't exactly spark motivation in me either. ALSO: I think I sewed nearly 500 masks for friends and strangers. That took up some creative efforts. 

Anyways, in other realms of the internet - I have tried to devote Mondays to motivational messages from our vivacious preschooler Delphine. Sometimes messages happen on a Tuesday (or not at all), but it helps my overfunctioning brain to shift my perspective to what a four year old sees and experiences. All of a sudden, it becomes much easier to see the positive or remark on something new. 

 So to lead into why this post has anything to do with Motivational Mondays...It has a lot to do with intention, luck and kismet.

 One of my Pandemic goals, or shifts, was to seriously begin thinking about learning American Sign Language (ASL). We used a very basic book when our babies were babies - and the intuitiveness always intrigued me. And the words we learned STUCK. All of my kids remember how to sign for "more" or "eat" or "baby". I was always pleasantly surprised when I got the chance to use that knowledge to say thank you to a customer at work in ASL or follow along when there is a deaf character in a tv show. 

 I purchased an online program to learn ASL after a Facebook friend shared it- 1st kismet! 

 My oldest daughter bears the biggest impact of my online lessons. I'll watch a few videos in our office/sewing room and quickly run across the hall to make her guess what my sign may mean. Fun way to annoy a 15 year old! 

 But my youngest daughter, Delphine, is often sitting right next to me. Drawing in MY adult coloring books (that I have officially surrendered) and halfway paying attention to Youtube videos and my screen as an instructor demonstates each new sign. She's been a fun learning partner. 

 This past spring, we were involved with outdoor soccer... about that time where Covid cases really were dropping off and we felt comfortable playing on playgrounds. I believe that half of the allure for kids playing any sport, is the chance to play on the slides *after* said practice. We play at the local park and the playground is just mobbed after each age group finishes their running back and forth. 

 One of these nights, I could see that a woman was nervously watching her child/grandchild (?) climb up the steps. It wasn't the normal type of helicopter parenting... she wasn't speaking to him, but trying desperately to keep eye contact as he weaved in among all of the other running kids. He was deaf and I could just sense her anxiety radiating off of her. I asked her if he could sign yet, and she said he only understood a few words. That's one aspect of ASL that I'll have to learn much more about - how does one teach this to a young child? 

 I grabbed Delphine and told her that the little boy wanted to play, but he wouldn't be able to understand if she said "Come on!" or "Let's pretend!". What makes my heart surge is how quickly she adapted. Talking is a HUGE part of her play routine and how she interacts with others. But she did her best to keep eye contact and she improvised what she thought might be the best way to show what to do next. Like patting the slide next to her or pointing in the direction of the swings.- 2nd Kismet! -  They played so happily together and I hope the other woman was able to breathe a bit, knowing that if she lost the little boy into the swarm of kids still wearing soccer cleats, he'd have a new friend who knew how to communicate. It gives me goosebumps thinking about how random this interaction was. 

 SO. To the point. It's a Motivational Monday. 

 Our knowledge infects others. Our intentions infect others. And I use the word infect, finally, in a good way! We spent all of these months trying NOT to spread germs or infect another person with a virus... but we stayed home and affected each other in a myriad of ways. Was everything I did during the quarantine a good influence on my kids? NOPE. Lots of swearing, lots of impatience and self-absorption. But dang it if an online ASL class hasn't changed our perspective for the better! Given us the tools to communicate outside of what we already knew. I'll always say be more like a toddler/preschooler/kid in when facing uncertainty. I'm so proud of Delphine's giving heart and willingness to meet another human where they are. 

An HSP in Disguise

 Oh, the perks of getting older... and realizing that my emotions really aren't much different than my teenage years. Wasn't I supposed to reach a state of Zen or maturity at some point? Why does it still sometimes feel like I'm sitting at home, by the phone, on a Friday night hoping that I will get invited to the party? 

 Is a mid-life crisis just as bad as being ousted from a clique in 5th grade??? Please say no!

My wise friend recently pointed out that maybe one of the reasons adulthood feels so difficult (even in the best of circumstances) is that we feel the pressure to act as if everything is ok. That we ourselves are completely fine. EVERYTHING IS FINE. Our houses should be well decorated, we should have a satisfying career, we should have money to explore our hobbies and travel at will. We should have a well established social circle and our families will too. We won't feel insecure or unwanted or very uncertain about everyday decisions. These are the unrealistic expectations. We all have serious doubts/fears and probably incorrectly, feel judged about not having it all figured out. 

EVERYTHING IS FINE.

Except it isn't. Parenthood, if anything, is a test tube of self-doubt. You never know if you've been too harsh or too lax. Are we reading enough books or watching too much television? Why don't we have game night more often? Are my children happy? (On a side note: I actually think it's healthy to feel that way - because if you think you know it all... you're probably not reacting to your children's varied personalities and their feedback should help guide you.) Adulting is rough! 

But if you think back to the teenage years, when everything felt out of your control and school was a social experiment (even in the best of circumstances) of whether you'd be elated or crying in the bathroom. What made those years bearable and what produced some of the best friendships... was the mutual understanding that life SUCKED for all of us. We fought with our parents, felt misunderstood, had raging hormones that were unpredictable. It was okay to write a dramatic note to a friend or say you didn't have a clue about what you wanted to study in college. It was okay to be a hot mess, because the assumption was that we were all hot messes in one way or another. Together. We saw the messy dynamics of each other's families and asked for help when we needed it. 

Fast forward to adulthood and it's so hard to be open and vulnerable. We hide behind social media posts - sharing mostly good things. It's frowned upon to be negative. It could be a liability for work or being accepted into what is now the "mommy clique". 

What I am learning as an adult, is that I am much more sensitive than I ever realized. I recently read only the introduction to the book The Highly Sensitive Person - I was ready to be diagnosed. Yes, that's me 150%.

 I have always "brushed off" rude comments or thought I was secure enough in my confidence to let criticism fall to the wayside. There are still parts of me that are very well-defined - I am very comfortable with my achievements, my balance with spirituality, my independent streak and my major life choices. But I also don't rebound quickly from rejection. I am hurt deeply by people's insensitive actions. I sometimes feel like I absorb the feelings in the room. If someone is stressed, it hits me with electricity. There's no turning it off.  I will think about our conversation two years from now. 

So what's my point about being a highly sensitive person in adulthood? I fear that adulthood prevents us from making those deep connections with others. Out of fear for being judged or not having it all together. Can't we all kind of revert and coddle our inner adolescent selves a bit? Can we all shout out loud "I DONT KNOWWHATTHERIGHTANSWER IS?" And can we all truly see each other for a moment... reach out and send a silly note, voice our concerns and value friendship like we used to. 

Are you There Internet, It's Me Alexis

This is a test. A test because several years have passed since the last "Balancing on One Foot" post and I'm setting a timer for when my kids will find this post. Maybe it's the year-long captivity we've experienced... but my children recently starting reading old posts and find their antics to be very enjoyable. 

 I haven't written here since 2013 - mostly because with limited time, I spent the hours I had on the sewing machine, working at a quilt store (until PANDEMIC) and raising now five kids. Time to update that ol' "about me" section. I had actually completely forgotten that I'd started a more professional Sewing blog at one point. 

 So if you find this Ayla, Jackson or Elliot - and you want me to post more embarassing stories about your youth, I'm game. 

 Sending this out into the void....