• The Power of a 1.5×1.5” B&W TV

    I am sure that I’m not the only one who feels such fondness of their childhood in their television set.

    Yes, kiddies, imagine a hard wooden box you had to shine with the good wood polish and a globe you could hear turn off for a solid 30 seconds after you … MANUALLY … walked to the set to shut it off.

    It was madness. Many of us with carpal tunnel have this condition because of those wooden boxes and constant clockwise twisting motion of the wrist. But, I digress. A lot.

    There were times my dad got rid of our television for reasons I’m sure no one remembers correctly and after a month, my sister said that she “won” a radio at work. The “radio” had a 1.5×1.5” black and white screen. It had ACCESS to Access Hollywood and Lifestyles of the Rich and Famous and other pure garbage!

    On that television, my brother and I sat head to head every Sunday night watching … 🎶 The Simpsoooooons.
    It was glorious knowing what everyone else was talking about on the public school bus we had to take to get to the private school bus we took well out of our school district.

    The tv was kept in my room, if I’m recalling correctly. I had trouble sleeping, even as an elementary school kid, so I’m sure I hijacked it because of that.

    Late at night, I started watching Mama’s Family and fell in LOVE with Betty White and Rue McClannahan who were on the early seasons.

    They tapered them out of being mentioned when they went to the Golden Girls. (All hail Estelle Getty)

    The show added a daughter-in-law, Naomi. Naomi; whose only fault was wearing dresses with her shoulders bare and smooching on her husband too much, being the target inside the house. Well, she was also a free loader, but come on now.

    Then add Bubba. Bubba inspired me when he wore fewer clothes and didn’t act so stupidly. I was way too young to have formed that strong of an opinion about Bubba from Mama’s Family. 😂

    That show made me a HOPELESS Golden Girls fan immediately. The type of crude humor that was cleaner and safer on that show got polished up and made shine like the glorious Golden shiny turd that makes my heart beat faster just thinking about the Golden Girls.

    Side note, I had to decide between “respectable” and “shows the doctor my hives” vs my Golden Girls shirt today for my oncologist. I have regrets. I could have taken off my shirt. Anyway …

    When my well-intentioned dad decided it was okay that we get a TV again, it was all we did during the weekday nights. Other than me going to church Sunday, Monday, Wednesday, Friday, and eventually Saturday nights; we got some TV watching in.

    Early on, it was Murder She Wrote. My brother and I were disgusting and shared dirty bath water to bathe faster so we didn’t miss it. Sunday nights were the only school nights we were allowed to stay up until 9 or 10 or whenever was too late. It was amazing. Sometimes we had ice cream.

    Looking back, he always took a bath first so I guess *I* was disgusting.

    All I knew were two things:

    1. Don’t invite Jessica Fletcher to any event ever.
    2. My dad had Angela Lansbury on a pedestal and denied having a crush on her. He lit up talking about how much he admired her and her whole schtick. “Oh Jessica,” I can still hear it. It was so freaking cute and funny to two kids.

    My mom and I had this amazing time enjoying all the cool 90’s stuff like Beverly Hills 90210 and then Melrose Place. On Thursdays, she’d always sit on the coffee table to see the 1970’s behemoth television closer. She’d then say to “Get the clicker and put the kids on.” I’ll never forget it. I thought it was cute, even then.

    The television is also what broke me as a kid. The PBS special “The Miracle of Life” was how I received sex ed. I went to a Mennonite school and a Mennonite church. The special taught me that I was going to look like some furry monster one day.

    I will never forget the crowning. Man, I wish I was talking about The Crown, but that masterpiece wouldn’t be out for a few decades.

    I got to see the technical, “here’s what happens when people WANT to have a baby and it all goes perfectly and in the end, you see the biggest lady hoo-ha you’ve ever seen and make a commitment to dry shave, if needed in order to prevent such atrocities in your own Fruit of the Looms.

    She was a brunette. She was so free.

    What were we talking about again?

  • February 5, 2024: Maybe she’s born with it; maybe it’s Pectus Excavatum

    My friend asked for an update since chemotherapy did what it did. She asked if Cigna or the hospital had arranged for a visiting nurse.

    (We are arranging for one by holding a fire under Cigna’s feet. I’m 80 minutes or so from my oncologist.)

    “I can’t change my own clothes most of the time so I’m confused, but Timmy and Gwyneth are on fire with how well they are doing coordinating their lives around me.

    I watched Timmy’s heart break for me in the hospital. I’ll never question how much he loves and is utterly confused by me ever again.

    He’s quickly adapting and I’m proud of him. He was an autistic wife line backer when providers stood too close or tried to examine me while they were being loud or disrespectful.

    I won’t know answers until Friday. I just know I’m not going to let a doctor’s opinion make me take more chemo. If they figure out the allergy, they can go back after radiation.

    All dates have changed because everything was contingent on successful chemo. For all I know, radiation will be sooner, but we haven’t seen what my chest wall looks like yet.

    (The deformity meant I should get proton radiation to limit exposure to my heart and lungs. If Cigna refuses proton radiation; and I will fight ridiculously hard to demand they tell me why they want me to die, I’ll likely transfer my care to a closer hospital because proton radiation was why I decided to drive to Penn to get treatment. I knew I was born with a hole in my chest from birth.)

    The testing to see what radiation is best for me was to be two weeks after chemo. I was supposed to start radiation a month after chemo ended. Now that’s up in the air.

    A case manager from Cigna called today but I promise, it’s not in me to speak to my dogs coherently, let alone Cigna. I’m sure they’d send someone. I’m just so tired that I can’t care if they do.

    I’m not on death’s door, so I’m thinking a bit more time off the chemo will help bring some energy levels back. My labs scream of why I feel so fcking sick. I am so fcking sick.

    I’m the sick that makes my family pinkie swear they’re masking and I’m secretly angry inside just imagining that they may not have done it. I’m the kind of sick getting very afraid of germs and it’s making me a snoodge paranoid. I don’t honor the feeling often, but it’s there. That’s new for me.

    I just sort of exist right now waiting to feel better and focusing on drinking and eating and being proactive with yoga when I can. It helps.

    My finger tips all sort of peeled off today. This is all so, so weird.”

  • Happy to be home … ?

    “Happy to be Home?” This is a loaded question.

    I had to write out how I was feeling because I cannot always see things clearly if I “talk” them out. You don’t really need to read it, but I needed to sort out my anger today about this whole experience.

    Leaving the hospital, with monitors allowing me the confidence to fall asleep without my blood oxygen dipping; has been a challenge.

    I am so happy to be home. I am so glad my dogs know where I am.

    I am also where I was before I could stubbornly hold my breath and say, “I’m not taking the steroids until you promise to tend to the side effects this life saving drug is causing.”

    I am on four antihistamines and some with off label antihistamine properties. I am being hit hard so my histamine (inflammatory) response isn’t a rage monster that causes a hive if I accidentally touch my skin for too long.

    Now, I’m at home so I can both give myself my PRN’s how they’re ordered, but also need to tap back into the loving resources that have become exhausted with me waiting for the white knight of cancer to arrive.

    I am home, but I am not as medically supported as everyone who lives in this home believes I should be. I cannot bathe. I cannot remember my new medicines. I cannot remember large parts of my hospital stay. I can not so many things right now.

    I can not hold my head up on my own. I am not who I was when I first got sick. I am the person who people start sending cards to because it makes them feel awkward to visit and see that I’m struggling with basic things.

    The exhausted people who were with me in the hospital now are tired at home and I don’t have a call bell. My beautiful crew has kept trying and evolving as fast as this hell has allowed.

    I have my current voice that finds asking twice for things to make me angry; a side effect of a shortened fuse from steroids. I hold myself in check here, while trying to educate caretakers on how beneficial planning ahead is. The charge nurse in me has to sit back and use 1,000 words to do something that I know how to do when I’m myself.

    I’m letting my pitbull massage therapist take over because I haven’t fully tried her treatment plan for me, yet. I’m not trying the cat’s plan, as cats are evil.

    This week, my allergy to chemo was obvious and all the hives have left my skin with open spots, hot spots, and the skin on my hands is peeling off in sheets.
    I faced compartment syndrome in both hands. (Google compartment syndrome)

    My husband and I will never be able to unsee how we almost lost my hands. It’ll be a therapy thing, I’m thinking. Tiny vessels exploded like it was my skin bursting open. It took 12° to distinguish between hives and capillaries leaking causing bruising everywhere.

    I have “leaky capillaries,” which now; ummm… explode with too much internal pressure. It’s awful.

    I was met with panicked surgeons due to intussusception in my intestines. They wanted me to do a barium swallow and then have surgery. I drank the barium and blew my intestines out, putting a pin in the belly adhesion emergency. Temporarily.

    I’m left with a lot of appointments to make and follow up on. I was never set up with a Gl doctor who wanted to know why my bowels turn inside themselves. I find that upsetting now that I see how many holes need to be filled in terms of “my care plan.”

    I’m met with a long steroid taper to finish at home.
    I have an oncologist I see in five days who will speak her confidence in the allergy I have and the same oncologist who didn’t bother to look at me while I was sleeping in her building.

    My lack of faith needs empathy and a solid follow up plan or I find myself feeling resentful of those who say they care or have an answer or idea they won’t share.

    I feel a lot of fear being sent home; knowing that the allergist directing my oncologist won’t see me for 4-6 weeks and also never stopped by to see me. And yet, I have my dogs and ability to take medicine as it’s actually ordered, not their way.”

    I am happy to be home, but it’s primarily because we all needed to come home and start believing our own eyes and start demanding the right specialists continue to treat me as a whole, and not “a healthy 44 year old who then developed cancer.

    I was suffering tremendously before this diagnosis. Oncology doesn’t seem to be factoring in massive body trauma and multiple concussions which locked all my muscles into spasm 13 months ago.

    Until they acknowledge me as a whole; I feel compelled to eventually run away instead of explaining myself and being dismissed repeatedly. I feel unsettled and angry that I was seen and admitted for emergencies not followed up on, in spite of promises I’d see those providers while I was inpatient at a hospital I very much respect, but had to leave in order to stomach.

  • Is she stubborn or is she determined?

    As a kid, I remember the line, “You’re going to be a GREAT lawyer when you grow up!” This line was never said in hopes that I’d have a six-figure income one day. I was considered a stubborn kid. Hard-headed. Willful. STUBBORN.

    One might imagine a very argumentative girl who ran her mouth nonstop to have her way or prove her point. The opposite rings truer; I have always been fairly quiet. Don’t get me wrong, I am a jackass. I love to goof off when I’m relaxed. Stand-up comedy, political satire, and videos with someone getting a slap to the testicles lights me up and causes my melancholy tongue to become hyperverbal. 

    As a kid, I’m sure whatever lit me up then also made me talk too much and DEFINITELY too loudly. “Stubborn” had nothing to do with my speaking. Stubborn had everything to do with my heart. Side note, submission from women was how I was raised. “Stubborn” should be removed from a girl so the woman in her will maintain the ongoing submission. Deep thought, so let me tell you this tail of stubborn.

    I remember deciding to do very unusual things just to see if I could stick to whatever my decision was. It wasn’t always, “learn to sing,” or “have a staring contest.” It was weird stuff. I must have been a very bored child.

    For example, when I was eleven, I decided to stop each meal by ending my chewing on the left side of my mouth. I recall hearing that teeth wear down worse on the dominant side because of overuse and harder teeth brushing. For some reason, that stuck, and to this day; I end everything I can on the left. I remember deciding to have this quirk, though. I’m sure part of it was a control issue, but part of me always challenged myself to odd habits like that. 

    I do have classic ADHD and get very invested in new things that pique my interest. To anyone unaware, ADHD causes many to be VERY, very into what we’re into. Like many, I get so invested that I overinvest, lose interest after hitting a wall, and then ditch the thing altogether. I am painfully typical that way. 

    What was “stubborn” as a kid was my needing to have things explained in explicit detail so I could bring myself to obey. I had a great deal of difficulty with blind obedience. As a church kid, this difficulty would not benefit me. Submission, back then, felt like blind obedience. A few trust issues, ADHD, and being a hyperrational autistic human made blind ANYthing difficult for me.

    “Stubborn” refused to practice car drills where we put a pillow on our heads in case of a collision. Backstory: we had to drive a decent distance in the back of our van in the glorious 1980’s. I remember the driver tapping on the brakes so we would physically roll up into a ball and practice a tumble in case we got hit by another car. (Please do not make me attempt to understand how a pillow was going to save my life from another car while beltless on a van floor. I promise, I couldn’t understand then and made sure the driver knew about it after the fourth break-check.)

    Stubborn; what a negative way to say, “determined.”

    Determined people are praised; they’re just usually praised after the fact. Determined people are seen as people who must be accomplishing something. Stubborn people are willful, rigid, controlling, and difficult. The difference between stubborn people and determined people is perspective and time.

    Today I learned, after 32 years, that my oldest friend considers me to be one of the most determined people she knows. When she said it, I was confused by her statement. Most of the things that I have accomplished that I’m proud of have occurred while I had a very small audience and she wasn’t always there to witness those things. Just the honor of the word, “determined,” felt untrue because determined people aren’t … stubborn like me. 

    Wait. Determined people ARE stubborn people. I came to that epiphany after my best friend reminded me of a job we had in 1994. Allow me to tell you a story of a time when gas was around $1/gallon and Cindy Crawford was making a workout tape that would make me a semi-maniacal, ab-rolling fitness junkie. 

    Picture it; two teenage girls using baby oil while tanning in the backyard of the apartment she lived in back then. In the distance, somewhere “I Saw the Sign” by Ace of Base is playing on a CD player that cost $99. We decide that we want to start working out, but don’t want to pay for a gym membership. I think the conversation went something like,

    Me: “I hear people who work at the YMCA get a free membership. Want to quit your job at Rita’s and I’ll quit my job at Dairy Queen and we can work there?”

    Her: “Yes!”

    Looking back, I see the similarities between our first jobs in the epic cool-foods industry. We mirrored for a while there, it seems. Back to the conversation I had today where she called me, “one of the most determined people I know.” I like that she said that so I wanted to type the sentence twice.

    She said, “You wanted to work out, so you got a job at a gym so we HAD to work out. I was thinking of working out like any other passing thing, but you decided you were completely committed. By doing that, you held me accountable.” 

    She said some other nice things I didn’t know and that’s when I realized that I had been given the wrong adjectives for myself. As an adult, I continued to use some variation of the same word, “stubborn” for myself. I did so while still accomplishing and tackling some of the biggest challenges in life. My favorite word is fortitude. Another friend gave me that word.

    Simply said; fortitude is the ability to keep trudging through; well, shit.

    Not only did I not realize that she saw me as determined; I did not realize the impact that my determination had on her. At 15, I became a Youth Fitness Instructor at the YMCA in Lansdale, Pennsylvania. My best friend and I never worked together. We split the week’s shifts and had the easiest job on the planet until I finished high school.

    I eventually became a gym manager and personal trainer when I was 20. I don’t know what the owner was actually thinking because, as I said, I was 20. I was much cuter back then, however, and I happened to know that he wanted to fire the current manager and just needed an excuse. Ask me how I know he wanted to fire his current gym manager?

    I was in the car with my parents and saw that they had just built a gym at this massive intersection called, “Five Points Plaza.” Five major roads came together there. As a new driver, one avoided this intersection because it was the devil. I tell my dad to pull into the gym and I went inside.

    I didn’t apply for the job. I decided I wanted to operate my massage therapy business out of a room and went in to ask if he had space for a massage therapist’s office. Within the first month of having my business there, I was also the general manager of the gym. He paid for me to get my certification and I worked as a personal trainer, gym manager, and massage therapist until I left to work at a pharmaceutical company for way more money. 

    She did not go on to live happily ever after with a dynasty like Cindy Crawford. I’ve gone through some stuff, primarily with fortitude. I’ve had moments of sheer shitting-the-bed-ness, but I can say that when I have messed up; I have desperately tried not to make the same error twice.

    I am stubborn. I am determined. I am learning to use better adjectives.

  • I am a Garden

    It’s okay to be scared.

    You are what you tell yourself and I am a garden.

    I’m writing today for the first time in a few months. I had a freak out, but it was overdue. My freak outs are basically just a moment of honesty at the wrong time or volume.

    Cancer demands I both be an individual and also depend on others more than ever. It’s a very difficult balance to ask for what you need when you’re so used to predicting what others need and no one else is accustomed to the job and the oodles of minutia that I obsess over to complete it “my way.”

    I have a weary kid trying to thrive while we are in survival mode. I have a husband learning new ways to love me while holding us together to the best of his ability. Instead of me riding on energy’s coattails, my inability to push forward sometimes feels deeply oppressive, time-consuming, and labor intensive.

    Therapy is wonderful, but so much can occur in one hour let alone from week to week.

    I’m surrounding myself with positive voices, shows, music, and people. The few people that are here, anyway. Some days it feels like if the mail didn’t exist; I’d be an afterthought.

    Some days it feels like I’m Kevin McCallister and I’m in a house made of cancer. Sometimes, I realize my feelings are lying to me and my worth is not in my worst moments in life.

    Anyway, freak out is over. I’m get so easily overwhelmed and one student loan issue made me snap. My kiddo and I went outside in the cold to reset my brain.

    Going outside and physically leaving the house automatically does it for me. It has to be outside. Cold, hot, rainy … the outside is where I’m happiest. (My new cold issue is why that stinks so badly. That’s 1/2 my year in pain just from the temperature.)

    She and I thought of a way to mentally reframe chemotherapy and what it’s doing for me. It’s using visual imagery.

    I’m imagining my white blood cells are beautiful plumeria. I’m imagining my red blood cells are a bird pollinating. I’m imagining that I am a garden.

    Surgery is the shovel.
    Chemo is the pesticide.
    Radiation levels everything left.

    If I’m a garden, this process is ugly and dangerous sometimes. Gardening doesn’t look good until it’s over. All of this is temporary.

    I can fester over my root rot or I can try to water the plumeria and leave bird seed out for that red bird I need to pay attention to me. I can resent what was or try to grow what will be.

    Imagining that I am a garden gives me a more peaceful place to tackle my cancer. Instead of grief over treatment and all the side effects and loss that go with it; mentally, I can tend to the garden and remember that it all will make sense when it’s over.

    I am a garden.

    These are my favorite flowers, currently. They refuse to quit and I REALLY love that about them.

  • Happy 45th to Me; a butterfly with nervous sugar wings avoiding the rain clouds of chemotherapy

    Thank you to the Breast Cancer Fundraiser for my warm feet and warmer heart before chemo

    Every morning this week I woke up with the same dream; my hair was gone as I woke up. It was all over my pillow only no one was home to carry me through that moment I’m fearing. Same dream. Same exact dream.

    I only have one other recurring dream, but I’m not talking about my teeth all falling out without someone holding my hand. (I kid, but that’s a creepy dream, too.)

    I’m freaking out off and on as my hair falls out and sort of gets sheered off by rubbing. I am nine days after my first round of chemo. I am eight days after my Neulasta injection. I am officially a radioactive middle ager.

    This dream I have; this nightmare, it has shown me how much I identify myself with my hair. My brain SCREAMS, “Only long hair is feminine.” I was raised as Mennonite and then just raised as a woman.

    I am a 45 year old (in 3 hours) woman with deep programming. (I also was sent to the barber as a kid so I have a confusing relationship with my hair.) Once I had the ability, I grew it to my waist. I only cut it a few years ago after weight loss made it thin and uneven.

    Hair is discussed a lot in the Bible and covering it or not covering it during church was debated. EVER having it short voluntarily was not even a topic to debate. Women had long hair. Period.

    If women had cancer, as a Mennonite kid; I didn’t notice. I missed a lot though. I remember older Mennonite women with significant receding hairlines from right buns, but never noticed anyone bald.

    I am very much in my feels today. Tomorrow, I turn 45 and only a few outsiders have visited since I got my diagnosis. There won’t be a party. There won’t be the distraction of life, even for a few hours for a birthday that felt landmark to me.

    45 is the halfway point, I always thought. 50 felt too hopeful, but 45 felt like a half-way point I could obtain.

    My husband made me a pink cake because this is the year I ring a bell after finishing my cancer treatments.

    I feel like I’m sick and getting older in a glass bowl as a fish. I am in a bowl that no one can interact with, everyone can see; but no one is able to step into to sit with me in the suck of cancer and chemo.

    I feel the chemo in my emotions and brain. It’s like a bath that never ends and the broken version you felt like yesterday; you now miss. You also forget to miss your higher function and lack of emotions self, because chemo brain makes you forget everything. You feel physically slow, but mentally you feel like you’re walking through Jello that’s been in the fridge for two weeks.

    The brain fog feels like someone took all of the proud parts and put me in a cotton candy maker and swirled me around. I feel fragmented into strands that all look sort of familiar, but aren’t structured the way they’re supposed to be.

    I look tired, but somehow not just tired. I look sick, but the sickness inside is more sick than a bald head can even hint at.

    I don’t much recognize myself at the moment.

    I see me, don’t recognize this version of me, and it’s happening in front of mainly an audience of two. That audience has had to be my right hand since January 6th of last year. They’re tired by now. I’m tired now, only chemo doesn’t care that my body wasn’t in prime shape to tolerate consensual poisoning.

    That’s chemo fog.

    My brain is currently being traumatized and bathed in chemicals along with my body. I feel it and acknowledging it actually removes the power of it.

    The chemo ends by March 1st and that round will be the worst and last. Hopefully that round will be the last one EVER.

    A month after that ends, radiation starts five days a week. My insides will be both healing and receiving more damage to a chest wall that was born with a birth defect.

    I noticed I was sick, ultimately finding cancer, after my birth defect got worse at age 44.

    By May or so, I’ll be just me recovering from all of it. If I start of act differently, know that chemo changes you on a cellular level. I may actually have some permanent changes or changes that take a long time to return.

    Hang in with me and it’ll be very interesting; if nothing else. My story may get weird. I need to start writing because chemo brain impacts your memory and ability to take in new information without getting hit by panic.

    Learning new things or having to make big decisions right now feels like nuclear science. I feel like I have the available intelligence of a college kid at Chico State during spring break after they developed a concussion.

    Sometimes I stutter now. Sometimes, I can’t find the right word even if I’m holding the object in my hand and the object is a can of soup. It takes me dramatically longer to do basic tasks than it took a month ago and a month ago, I had trouble.

    Thank you for loving me and reminding me to stay kind inside when my brokenness was more anger-filled and unhealed. This version of me is just mourning and has become Ten-second-Tom from 50 First Dates.

    This part of me is broken, but also more whole. I am a lighthouse for misfits, but I’m also deeply diminished and struggling to find an IQ that even I found pleasant to have. That means much less now. I couldn’t remember what a straw was called yesterday.

    “I don’t mind getting sick, as long as I have my mental faculties.” Who hasn’t said that? I did. Currently, I cry and it looks irrational if you haven’t been following along. I make perfect sense once you get to know me.

    My last set of tears came after a sip of something with citrus. The radiating piercing in my jaw and glands made me look as ridiculous as someone sucking on a bag of War Heads.

    Science has the ability to cure cancer. The tricky part is keeping the patient alive while you cure it.

    Tomorrow is my birthday and I am a shameless supporter of others. It would mean so much to me if you knew how much you mean to me.

    Our banters and boosts and blankets of support are the difference some days. I am not doing my best with updates, but I’m also not in a place to put much energy outward.

    I ♥️ you, those who read, write, and hold me close. You sustain me.


    Cancer treatments are cruel because cancer demands they be. It’s very challenging.

    I hope this update helps.

    Some of the bravest people you know cry significantly more than anyone thinks. I know because the more I cry, so long as I keep moving forward, the braver people seem to think I am.

    Courage is not about a lack of tears. Courage often is the fear met with determination to build an oar out of your own bones, if needed, in order to row upstream from why your tears are occurring in the first place.

    This is my husband who made me a cake with pink cream cheese icing and candy because all 45-year-old women need pink cakes to help kick cancer in the teeth. He has never baked me a cake before. This was such a nice present.

  • My dark wolf

    Sometimes I grow tired and in the battle between my good and my evil, the darker wolf inside of me comes to life.

    When I am rested or in actual nature, rarely does this wolf present itself. There are moments, even then, when I grow frustrated over a battery dying on my phone and I get anxious and edgy and unable to be soothed by anyone, but myself and time.

    I can beat that wolf away with just a glance. At most, it takes a strongly worded statement of certainty that the wolf would not be entertained, even if it was present in the background.

    When I am tired or when I feel so scared that I scratch while I look for the closest, safe person; this wolf comes alive. I thank God I’ve identified it and can breath squarely or feel grass under my feet to make it walk away.

    Since I got sick, I became fearful. When bruises show up for no reason and you fall down the stairs with tanking blood pressure, absolutely everything feels scary. The joyful part of me is hiding and I drag it out forcefully hourly most days.

    That joy feeds my better wolf. Love, companionship, laughter, and stillness all feed the part of me that needs to live the most. Hands that could bat away haunting accusations or misunderstandings are busy rubbing bones that feel like they’re breaking, as some of them have been.

    That dark wolf has a tongue and it doesn’t desire flesh and bone, it demands the final word and it demands immediate explanations that will never come.

    The dark wolf exists in a nightmare. The things it truly seeks; those things do not exist. There is no resolution. There is no clarifying comment that will unring a bell that time has made sound more and more off key.

    What was once a genuine sting became a gaping wound; no words can fix a gaping wound caused half by your own misperception.

    Left to the course of nature, the worse wolf will live as it destroys those around it. Most worst wolves do not roam freely in the street.

    Mine is hidden until moments of exhaustion or over stimulation. Anger sits like hot coals in my belly so those are the times I sink and grow silent and withdraw into a cave that feels distant, but cold. I erupted momentarily and killed that wolf; I hope.

    That wolf’s fuel is poison and misremembers good because bad was so much more impactful. The worse wolf is a ferocious martyr, lying to itself about how to get off it’s own cross.

    The dark wolf runs on feeling alone and cannot be honored in moments of uncertainty. Feelings make an amazing guide when you’re centered, but will devour your decision making skills if honored, when in doubt.

    Feed your better wolf, me. Yes, you.

  • It’s a Club like I’ve Never Known

    Forgiveness is funny. Some require a certain level of remorse or sacrifice in order to pencil in an appointment in order to come to the table to discuss the possible terms and conditions of a future forgiveness venture.

    Others aren’t so tricky and just require the lens of current circumstances to realize that relationships need to be tended to in order of what’s on fire, not in a chronological order no one will ever agree on.

    Some see a matter of life and death and put a pin in the fight, into “the thing” no one fully understands; only to know that no mending can take place until “the thing” is handled.

    I know certain truths to be unwavering. When most hear “cancer,” or “chemo,” or “radiation,” they are not inclined to sit on the side lines watching someone struggle.

    I guess it depends what love is to you, but I couldn’t say “I love you,” then watch you drown.

    To me, love runs into a cancer center if it gets a phone call or a confusing text saying “If this is it, I love you.” Love is a relentless pursuer of “How can I help?” Love reprioritizes what is worth holding a grudge over. Love has conversation before it throws out threats.

    I wanted to be accepted for fitting in the same way everyone else did. I eventually just wanted to fit in for how I fit into the universe on my own. Now, I barely take up a corner of a sofa cushion and I’d like to fit in however I damn well fit.

    I will never be talented enough or particularly beautiful enough to make Miss Congeniality. I am currently not even doing cancer correctly.

    I’ve seen Hallmark movies and I see how that one person gets sick and it brings people together because they decide nothing matters more than love matters. The scene ultimately pans out to some snow covered window and everyone is standing around some arm chair while the sick person feels the heat of a fire and a fuzzy blanket.

    My club accepted me secretly in my emails and publicly on forums where they shout messages that feel amazing, but aren’t as warm as a familiar casserole on a night when you just simply can’t rise to the occasion.

    My club calls me family. Family, apparently cannot be shaken upside down like a snow globe, creating a new scene just as beautiful as before where things have simply settled differently. Some snow globes do not have a club house in them at all.

    It’s difficult being grateful for those I may never thank or hold, when words fail me and all I really ache for is the safety of collapsing into the familiar. Nothing is familiar and my most treasured comforts are not weathered and worn, but are new and surprising me daily as they arrive.

    I do not resent the new. I relish the new. Getting sick has been a bittersweet realization that as the new blessings arrive, the bitter feeling left is the loss of a comfort that will never come now that I am not a kid with missing bangs and a Tom boy haircut. My adult cancer isn’t huggable.

  • What is up with this chick?

    “She must be attention seeking, a liar, has the luck of Lot, or is really sick and not lied once about struggling before cancer became king.”

    Some days, I physically feel pain when I speak. The videos I make are some of my only ways to communicate. I get picked on for that. It’s all I’ve got left so …

    Specialists initially suspected Relapsing Polychondritis because I was so sick, had trachea involvement and my voice box was being crushed.

    I also had ear changes.

    Whatever is below cancer in the hierarchy is the thing causing me agony physically. The past few weeks make it hard to do absolutely anything and I’m barely speaking at home. It literally hurts.

    The deep tissue and muscles in my neck at C3 had an injury. Scar tissue grew. It’s connecting my skin to the muscles and the muscles to the trachea rings. It’s a spider web of hell inside my body.

    I also have to figure out what radiation looks like for me and see what my insurance company thinks my life is worth to save them money. Cigna told to expect an immediate denial even though I have a birth defect that makes Proton Radiation my best option to leave my heart and lung alone. It’s terrifying.

    Right now, I live in either totally numb inside to moments of fear or panic. PRN Valium was handed to me with my diagnosis. I didn’t know how right my doctor was that day.

    Cancer leaves a fear you cannot rationalize because it’s all new and has 1,000 variables. Add pain to that level of momentary fear and I feel like I’m losing the best part of myself.

    I love in acts of service and currently, I can’t buckle my dog’s leash or fight this brain fog and lethargy that no amount of sleep improves.

    I’m a fearful fog who others call brave because they’ve either seen it, had it, feared it, or don’t know what else to say.

    Some days, I can’t meal plan. Some days, the 130 miles my husband drives to and from work leave him spent and foraging has become routine.

    Believe me when I say nutrition matters. We’re trying.

    We are walking around grateful for everything and struggling with weirdly normal things like if I’ll have the energy to drive to a store let alone treatment for breast cancer 63 miles north of me.

    I am a cowardly, brave person solely because I won’t quit. I have tapped out needing breaks because I have battled some of the most life altering events one can imagine in a short time period. I’ve regretted most times I’ve quit.

    Once I’m in remission, the battle I have been fighting since January will still continue. I’m more complicated than cancer.

    Sorry if this sounds whiny. It’s because I’m whining.

  • Partial Mastectomy is Complete So Now What???

    Cancer is a sleep-inducing giant of a monster

    I’m accepting prayers, well-wishes, and advice. A partial mastectomy with the removal of two lymph nodes was only round 1 in terms of battling breast cancer.

    I don’t actually know how many rounds there are because cancer refuses to give you a specific game plan upon diagnosis. After surgery, it’s either radiation OR chemo first and then radiation. Radiation is guaranteed; chemo only if my lymph node biopsies and my genetic screening shows a high possibility this cancer will return.

    Since my surgery on 11/15, I’ve been either napping, sleeping, snoozing, or occasionally full-fledged panicking that my radiology team and I are not prepared for what MY radiation looks like for me. Trusting others entirely is not my strong suit. Trusting medical experts even less so. A lot of experts have hacked me to pieces because they were confident and I was desperate for a return of function.

    The default external radiation many get will fry my lung and heart because I was born with a chest wall malformation called pectus excavatum. Upon my radiologist looking at my PET/CT, his eyes did the same thing all my other specialist’s eyes did … they bugged out.

    Picture a rib cage with about 3” sunk in on my right rib cage so my heart and lung tissue REALLY want to fill in the left side of my chest, placing them directly in the line of fire. I saw the demonstration on the monitor and it scared everyone in the room. I cannot be treated “traditionally.”

    My radiologist and I both, thus far, fully believe that I’ll be more successful with Proton Radiation, Cigna thinks it’s experimental until we show the other kinds of radiation will cause heart and lung damage I won’t recover from.

    As of this morning, my lymph node biopsies aren’t back. I left the radiologist three names of pulmonologists/surgery who said I likely need surgery to have a normal rib cage. I’m hoping the physician’s notes and my previous pulmonary function tests help Cigna immediately see that I need the kind of radiation that brought me to Penn Medicine in the first place.

    I need prayers for:

    Courage.
    Social work at Penn to help me find a place to stay in center city, if needed.
    Ease of getting to radiation five days per week.
    As healthy an immune system as I can have.
    Companionship through radiation.
    Less lethargy and confusion.
    More hope that this won’t kill healthy cells.
    Panic to flee when I know I’ve done all I can do.

    Thanks. Round 2 is coming so I need to be preparing while I heal. It has not yet begun so I don’t know what round 2 looks like, yet.

    This is the most recent update I have to give. It’s not much of one, but this part is critical for me so I’m not hushing when I need more support still.

    People not reaching out for support by waving their arms in the air asking for company while they navigate Hell for the first time, are not me. I’m glad they know what they’re doing. I don’t, minus bits of information being fed to me by providers.

    P.s. (To the scant few who insist on blathering on) Judging me for being transparent in my feelings during an illness tons of people get, seems pretty cocky and if that’s you … stop following me if me vocalizing that I feel like a human dumpster irks you. Seriously, IF CANCER BOTHERS YOU, I get it. If me telling people CANCER IS BOTHERING ME offends you, get a grip and hug your privilege tighter.

    Cancer is bothering me.