Comfort Care
My brother called me this afternoon to let me know that the outlook for grandma wasn’t getting better. She has been heavily sleeping, barely eating and was under comfort care.
Comfort care is defined as a patient care plan that is focused on symptom control, pain relief, and quality of life. It is typically administered to patients who have already been hospitalized several times, with further medical treatment unlikely to change matters. Comfort care takes the form of hospice care and palliative care.
They don’t think she will ever be able to walk again after her surgery, and that hospice is the next step. She won’t be able to go home, the home that she so loved.
I can’t imagine the farm without her. I can’t imagine my life without her. I’ve been incredibly blessed to have had the opportunity for her great-grandchildren know and love her. It doesn’t make it easier thought. Grief is grief and sadness is sadness.
The Tortured Poet Department
Earlier this year my sister-in-law invited me to see the Era’s movie with her and my niece, and I happily joined in the fun. Not because I liked Taylor Swift; at that point, I really hadn’t listened to any of her music. Going was more of something to do and spend time with people I liked. I left the movie with a greater appreciation for the Taylor Swift world, how charismatic she is to her fans, and why she has haters who are gonna hate hate hate.
I have always appreciated her business sense. She’s smart, tenacious, savvy, and kind. I also believe that she lives in a world that no one else can even begin to comprehend and the complexities of everything she needs to navigate just to be a human being.
So, when we heard that she was releasing a new album on April 19, I was a little excited—okay, I was very excited. I have never waited anxiously for an album to drop. Ever. Never. But there I was at 11:00 central time, clicking the play button on Spotify and texting my sister-in-law about the songs that I liked and didn’t like.
Taylor isn’t mind-blowing incredible. Her music seems to sound alike, and there isn’t much bravery in trying something new. It’s easy to listen to in the background and easy to tap your toes to. What Taylor gets right is that she writes what she knows, her life. She tells a story using words that play off of each other and as you learn the story behind the song, you become invested more and more into the music, because you almost feel like Taylor is telling you a secret, that she is starting the film real on her life and allowing you to sit in her living room and watch the story unfold. She makes you feel included. And she does it for every single generation, grandmas, moms, daughters, aunts, uncles, dads and brothers and sisters. She doesn’t exclude anyone. We can all close our eyes and pretend that Taylor’s story is ours, or we compare our world with hers and see similarities.
So for now, I guess I’m a Swifty. 🙂
Trip down memory lane
I grew up in the 80’s (yes the 1900’s), a Gen X’er who drank from the firehose and was a latch key pirate. I have lived in a world without internet, a world where the internet was dial up 1800 baud modems, a world that saw the creation of the first browser, the first cell phone, the first.. the first.. the first..
I bought my first computer in 1994. It had a 8MB of ram and an 80MB hard drive. For a today conversion, that is 16 HEIC photos on your iphone. I had an 1800 baud modem that made the most beautiful screeching sound that connected me to AOL Online and my local BBS. Less than 20% of the world had a personal computer, compared to the 96% in 2024.
That computer was the opening of a world that I didn’t even know existed. I struggled in school. I continually flunked my math classes and now know it was due to Dyscalculia, which is much like dyslexia, whereas dyscalculia affects brain areas that handle math- and number-related skills and understanding. We didn’t have computers in school, so this giant box was my first introduction to the glorious things it could do; which at that time was Mine Sweeper, Solutaire and a Microsoft Word.
One small act; purchasing a computer, changed the entire trajectory of my life. I taught myself HTML, learned mySQL, started designing web pages, started my own online business that ran for 12 years, started teaching people how to use WordPress, started speaking at WordCamps and now.. I work for WordPress 🙂 One computer, a million years ago. One choice. Once change. Big results!
What lit the fire?
Creative writing has always been in the back of my brain, itching to bubble to the top and be freed. I remember my senior year of high school, taking the creative writing class and feeling this sense of exhilaration at the words that would flow onto the paper, etched into the DNA of the universe. One word after another word.
I journaled during the C with an E, though those journal posts are private, for now. The other Stacy without an E has been poking me to journal more, followed by watching my co-worker V posting for the last 100+ days, which lit the fire under the creative writing preverbal pot.
Writing doesn’t always come easy. There needs to be a mood swirling about, giving the lit match an accelerant. I also don’t write in a way that would please even the lax of grammar police. Thoughts are. They don’t form proper sentences or abide traditional guidelines. Thoughts just are.
I have a folder in the basement stuffed full of teenage angst. Poetry filled with anger, sadness and longing. I have one has engraved on the inside of my skull, I don’t even need to close my eyes to remember that starting lines.
Acid brains, burning in hell.
People screaming, bodies for sale.
I believe that the way I think, the way that I feel, the way that I write, is why I love music. My words feel like music to me, making you pause. Think. Feel. That may be rather boastful of me, and I choose not to give way to the imposter syndrome that lurks around the darkness waiting for the perfect moment to step into the light and declare “She is a fraud!”
I turn off grammarly, I turn on my “Writing Music” playlist and I follow the lessons my Creative Writing teacher taught me my senior year. Write. Don’t worry about misspellings. Don’t worry about structure. Don’t worry about making sense. Write as if you had to write to save your life from drowning in the words that have been ever growing in your head. Let them free. Let them fill the open spaces around you and become real, released and free. Write. Dream. Love.
Stacy Without an E
I was, again, the new girl in school. 8th grade, middle school, the hardest years of a teenagers life. I don’t know how we met, but we did. It was probably because we had the same name, spelled the same way. Stacy without an E. You brought me into your friend group and we were it. Birthday parties in the basement, lunches with chocolate shakes and cherry filling, after school listening to music and talking about boys.
We watched the Challenger on tv’s on media carts, explode, the memory seared into my memory due to the tragedy of it all. You made my life tolerable. You made me feel seen.
I moved again, and again, and you stayed as a number in my rolodex saved for when I was back in a “calm” period of my life. It could be months between calls, or years, and it didn’t matter. We picked up where we left off, as if time had stopped during the lapse and everything was right in the world, because we were Stacy without an E.
I cried when the announcement happened that you had cancer. The C, with an E. The story of your life was already so tragic and this felt like overkill. Hospitals, chemo, blood marrow transplant. You were so weak right afterward, asking for your Squirt knowing that it wasn’t going to end well. The stay in the hotel room, with friends, signed up to be there to make sure you recovered and could come home. Trips to Omaha, long waits between appointments, chanting the mantra Fuck the C with an E.
And the days rolled on, and then it was my turn for the announcement of the C with an E. It wasn’t a bonding experience that either of us wanted to cement the 30+ year friendship, and here we are. We play Hand and Foot, and talk about grief and recovery, and feeling stuck and rejoicing in our children and laugh at the silly things that women our age shouldn’t find funny.
1985. The joining of the Stacy’s without an E. The crystal ball would have shown the future , our life lines intertwined and connected in happiness and tragedy. In silence and screaming. In laughter and in tears. And had we looked in the ball and asked “Do you want to continue?”, the answer would have still been yes. Because without you, there wouldn’t be the me that we all know.
2023, Oh how I hate you
My memories on Facebook roll the slide show of a year that left me wounded and forever changed. A year ago last week, I had my mammogram. Instead of the normal all clear call, I was pulled into a room, and blurred words explain that it wasn’t all clear. This week last year, I was in San Francisco, replaying the conversation in my mind over and over. Next week last year I would go in for two biopsies. And the grand finale comes April 28, the call that dropped me into a black ocean, turbulent, with waves crashing over my head, shoving me deeper and deeper into the darkness, with no lifeline to save me. Doctor appointments. Big scary words. Decisions that I don’t want to make. Just another chapter in the book called me.
I spent my days desperately trying to find the lemonade amongst the lemons that life kept pelting me with. I kept moving forward, battered and bruised. No longer me, but just like me with an apple rotting my spirit. 2023 sucked. There is no sugar coating. 2023 sucked.
Ever so Quiver
She was a trailblazer. Taking on the patriarchy way before we understood what patriarchy was. She was brave, courageous, stone cold in a nice way. She understood what it took to walk toe to toe with the men who didn’t believe she should be in her position.
She grew up on a farm, where in the winter she would wake up in the morning with snow drifts in the corners of her bedroom. She raised 3 boys and lost a girl at childbirth. When I came along, in my dysfunctional world, she stepped up and rubbed her hands together and said “Give me that girl! I’ll take care of her!”
She created a world of mystery and imagination in my broken little world. In her closet she kept a box of dress up clothes. Pretty dresses, dangly necklaces and high heeled shoes. She would get her hands on refrigerator boxes and we would decorate them, cutting out windows, and at night, we would drag our mattresses outside into the boxes and sleep under the stars.
She’s 94 now. She had several mini strokes a few years back that wiped out her short term memory. Everything resets every 15 minutes. She fell a few months back and hit her head, which was the domino to her downfall. Hospital, rehab, home, hospital, rehab, hospital… broken hip, surgery, loss of blood, low blood pressure. And through it all, her memory reset every 15 minutes.
I saw her in the hospital this week and it broke every single piece of my heart. My hero. My protector. The person who I wanted to be like. The person who I wanted to make proud. The person who marveled at my accomplishments and bragged about me to her friends. Now laying in a bed. I said “Grandma, it’s me Stacy.” and her face filled with confusion. She whispered, “I used to know a Stacy. But she’s gone. She abandoned me. Everyone has abandoned me.”
I reassured her that I hadn’t. She would forget in 15 minutes though. She told me about how she used to have Stacy all the time and she loved Stacy. That Stacy was so sweet, such a sweet girl…. And her chin quivered, and she cried. She turned her head and looked at me and said, “Are you really my Stacy?”
I just stroked her head and reassured her that yes, I was really her Stacy, and that I loved her.
She always told me that the day you stop learning is the day you die. I’ve held onto those worlds like an anthem, and become my own trailblazer, she raised me well.
The Second Call
I grew up in a household of abuse and sadness. With a mother running desperately after the next ticket to happiness, while discarding her children when their burden was to heavy for her to carry any longer. Through the years, she methodically wove a web of lies about the world that made her the victim. Lies of friends, of family, of ex-husbands, of children.
My second call wasn’t to her.
It was to dad and step-mom Linda.
I grew up believing they didn’t want me. They had their new family, with their own child, and I was the mistake, the inconvenience. Through the years, the warped perception of my worth became less askew and I started to see a world that was more in tune with the truth. They loved me. The distortion though, never fully goes away. You always walk your journey with this ugly rock in your shoe, reminding you of the past and what you were told. You can shake the rock out, and it just comes right on back, never giving you a moments of rest of comfort. You always second guess. Do they really love me?
They were an hour behind us, dad was in his sleeping slumber of Mountain time. Linda answered. We don’t talk very often on the phone. We had been lately.
“The results from my biopsy are back.” I mustered everything that I could to deliver the next words with clarity and without emotion. “It is breast cancer.”
I’ve never heard her cry before.
2023 Comes To An End
I started the year going to Barcelona, my first international trip with a short layover in Munich Germany.
I ended the year in Munich, Germany, having transferred to the WordPress.com team and attended our division meetup.
Bookends to a year that was anything but uneventful.
We are 11 hours and 55 minutes away from the start of 2024. There are so many parts of me that want to forget what happened this year and so many other parts that know there were beautiful moments in the drama and chaos that cancer brings into your life.
I’m unsure if I’m qualified to say I am a Swifty, but I’m on that journey. As I write this, a playlist of Taylor’s uncomplicated music plays on the speaker.
157 Days
157 days ago, I received a phone call that will change my life forever.
In the last 157 days, I had to come to terms with the fact that I had breast cancer. I had to tell my husband, my children, my family. I have felt a level of fear that you only read about in stories and you can’t relate to because it’s so primal and deep.
I have offered my body to surgeons to remove parts of me that I thought made me female. I have laid on an operating table and handed my life over to them to take away something that was trying to kill me.
We thought we were done after the surgery, free to re-start this new life with uncertainty and minor relief, only to be confronted with a scarier reality of the type of cancer I had and the words “chemo”.
I have sat in a chair 4 times and allowed them to insert a needle into the port in my chest and slowly drip, drip, drip, poison into my veins. I have slipped on iced booties and mittens that were so cold they hurt. I have looked around a room full of people, just like me, trying to live their lives the best way they can.
I have seen the concern in my children’s eyes. I have felt the sadness of watching them navigate this journey and knowing that there is little I can do to make it better, because cancer sucks and you can’t fix that level of suck.
I had to see my grandmother for the last time. She doesn’t remember things like she used to, and the trauma of my cancer would be something that would be repeated over and over and over again, and in the grand scheme of things, the pain that would inflict was to much. She doesn’t remember my last visit. She knows I love her. She is proud of me even without this knowledge.
I have seen the exhaustion in my husband’s face, his body. Trying so hard to keep the whole world together with duct tape and super glue. When he reached the stage of running out of the tools needed to care for me, the children, himself, dealing with a work place he has given 17 years to treat him like he was trying to take advantage of them.
And through all of this, we have drank the lemonade.
I have felt deep love. I have had random text messages, and surprise meals (and sooooo many cookies). I have had boob parties and porch dinners. I have had dinner and forgiveness. I have “I love yous” and support and I have laughed. I have laughed so hard, and so often. In a weird way, I don’t believe I have ever been this happy before. Weird kind of dynamic.
To everyone who has been here over the last 157 days, or even 30 days, thank you. Thank you from the very bottom of my soul. I can’t imagine how lonely it would have been without you.
I don’t know what the future holds. It’s still scary, and thought the chemo is over, the “cancer” isn’t. There is no graduating out of this club. I will live with the destruction that chemo has done to my body, going to physical and occupational therapy. Seeing my oncologist every 3 months. Getting scans and tests for the next 5 years. Always living with a fear of recurrence.
I do know that coming out on this side of chemo, my life is better.
In the grand tapestry of existence, there are no accidents, only hidden threads of purpose weaving the fabric of our lives. And in retrospect, we find solace in knowing that we wouldn’t undo the past, for it is the intricate mosaic of our experiences that has shaped us into who we are today. – Love, me.