• Christmas Expectations

    If expectation is “the strong belief that something will happen or be the case in the future;” Christmas expectations are the culmination of the efforts placed in getting ready to celebrate the holidays together as family.

    Today is Christmas Eve. My family fought so hard to get my cancer complications settled in time to hold onto each other closer, we almost failed to.

    The issue with cancer is this; cancer sucks so hard, you resent every provider that tries to tell you that pain is no longer a vital sign.

    My pain resulted in seizures that were new to me and new to my family’s experience. As a former nurse, seizure is not new to me, as a professional. The profession I took voluntarily, my family had to step into against their will.

    Manufacturing isn’t nursing. Universities teaching English, even in an honors program; they don’t prepare you for the outfall from nerve blocks needed to free you from weird childhood and cancer shit.

    I received a series of nerve blocks after a devastating accident I had on January 6, 2023.

    Two days before my 44th birthday, my own pit bull, I WORSHIP now and rub pain out of for hours a day, ran me head-first into a tree.

    I slammed the earth so hard after I passed out, I rolled my entire spine on the ground, creating swelling that would plague me for two years.

    My family celebrates anniversaries so hard. Every day of importance, I thought I knew about before cancer. Birthdays, anniversaries, move-in dates, dates of graduation of our kids, and all the normal calendar highlights; I know them still.

    I remember nothing now. I have a severe neurological issue right now. I feel so shaky, I passed as anxious in my sleep. I looked guarded, with my arms tucked tightly by my sides, making my autism look extra t-Rex-ed. I felt more vulnerable than I even looked.

    After I hit the tree, a surgery I’d grow to resent, Gastric bypass, seemed to keep working past my desire to lose more weight.

    I was a size 4 and 138 lbs and felt awesome. I started chemo at 113 lbs and in a children’s clothing size 10-12. I was still shrinking, as of last week.

    I felt awesome for a minute and then felt so badly, I begged my NP to take me seriously as a tiny former-RN, they once clearly valued as a former peer. I now felt as invisible as I felt.

    Leaving that practice was what saved my life, and even that was against my will. Nothing has been predictable since well before cancer diagnosis. I expected Get Well cards.

    The cards I received, I asked for and they were few. Those felt so icky because I asked. I later told a friend, Doc, that I was so lonely being misunderstood on a platform we both used, and I couldn’t tell jokes very easily anymore.

    Doc is MY friend and family.

    When I stopped being funny on an app, a friend in another state noticed, they started texting me dad jokes and had their friends send a card to make me smile.

    I expected cards from friends and family, but received encouragement from strangers who felt encouraged by me, somehow.

    I expected that telling loved ones that I was so hurt, nothing could matter but me right now and if I’d feel better, I’d need a hand in doing so. I asked for my kiddo, when asking for me was not effective.

    Yesterday, unexpectedly, my family decided nothing more mattered than me. We danced after telling me to rest all day for preparations.

    Die Hard IS a Christmas movie.

    We sang with voices so scratchy, we all sounded as tone deaf as my husband does, naturally. We saw animals come to life and laughter return to our home.

    I didn’t expect my dog to wake me up with neck spasms because she’d overdone it. I also didn’t expect to feel so much better that I’d actually accepted a massage from my daughter, as she expected to give me.

    I am healing now, slowly. I also have burst of muscle spasms that release and I can move easier than I could the day before. The tension always comes before the release.

    This is amazing to me, since my pain lowering, lowers the tension of the house.

    For almost 15 months since diagnosis, and almost two years since my tree injury; my family has had to move on a dime. It is now routine emergency. It sucks and is no way to live, especially happily.

    My husband stays calm and my kid runs around packing a bag with our critical items like Powerade Zero & phone chargers and meds since I’ll be in the emergency room so long, I definitely won’t be home to take anything scheduled for pain or seizure.

    Eggshells are walked on as my actual nervous system was rocked to the core. I do vagus nerve resets just to move my thumb. Every joint has been impacted since the tree impacted my head. I move like the Scarecrow when I once moved like the Tin Man.

    Hypermobile joints are returning and so is the expectation of Christmas. The expectation I have involves gifts we know about in an open Amazon box because we have no energy or ability to wrap a gift.

    I used to have both and my “energy” changed when I stopped fearing seizures and learned the trick to stopping them before they start. Talk about tension.

    My neck tension was holding up my head, not neck strength. No home can have Christmas in tension, but my family has always had holidays together in strength and expectation of another.

    Merry Christmas and because every human is valued in the kingdom of Buttercup, Happy Holidays.

  • The First Pancake Kid

    Dads have a choice to step up or out, include or not, and let know your life is radically changing before it radically doesn’t include the “first pancake kid.”

    Having more pancakes much later doesn’t negate the first one you didn’t know what to do with so you chucked it. Acknowledging it, at least to yourself, feels like a good place to start.

    A failed marriage doesn’t mean it’s up to a child to pursue relationship or plot activities that actually do happen. All the parental wins scored in terms of “remember this important date;” I gave those wins for free FOR (insert pancake’s name here) SUPPORT until new pancakes entered the stage.

    I don’t want the prize won by that human who married someone I divorced. The chef never arrived for us minus the initial delivery.

    That is why I left, to be crystal clear. I saw then what was proven later. I don’t care if I’ve been married twice before because I was an infant in a wedding gown at 21.

    I became a mom at 22 and THAT is when I immediately woke up & walked into a greater vow than a marital vow. “I promise to protect you & to speak honestly with you so you always knew what words to say and that I was safe.” I made that vow the day I had the ultrasound that showed me my pancake was a girl.

    Coming from a childhood sexual abuse history, that vow would always mean more to me. I’d like to say I never loved the batter I married that gave me a beautiful girl; but I did.

    Cooking mistakes you can tolerate as a solo diner; you find yourself being more critical of when you’re paying the bill and others are counting on the meal to taste decently. Higher standards only came in when I had someone to be deeply accountable to; MY first, and now only, pancake.

    One pancake will always break my kid’s heart because that is her half-sibling she can’t have a relationship with because of the chef’s and sous chef’s choice.

    My daughter’s step dad saw me editing hurt onto a photo of a blanket I’d love to give her, but can’t because “Dad” can be a curse word.

    “Dad” is short for “Daddy” which is short for “Trusted Parent who won’t quit.”

    I can’t give her this blanket because I am not her dad. Who is her dad? Ask my husband and he will tell you that he loves his daughter wholeheartedly & past the age of 18.

    He aches through student loans & next phase events; even when no court said he was under any obligation to do so.

    “It’s child support payment time so finally I’m on __’s mind now,” became so sadly predictable.

    “You must have received child support because I finally got a text asking me how I was doing.” Do you know how often that kid was right? Always.

    Fathers aren’t removed from lives often. If they are; it’s like getting fired after repeatedly calling out or being a no-show — you usually know why & it often WAS on you.

    Fathers, Moms, and trusted guardians should never stop pursuing the love of a kid that knows what “Daddy means.” Hurt isn’t different because hurt behaves autistic BECAUSE SHE IS AUTISTIC & unable to mask during hell.

    It’s stifled and one person only can fix that. “There are no good men, but Timmy. Do you think he tapped out because he expected someone else to tap in?” I have heard many sentences of questions & theories.

    Meanwhile, we pray for peace in a heart that may always feel unsettled. If she didn’t have a man who insists on checking her oil before she drives any long distance, her father would be me.

    It’s been almost a year since my diagnosis & almost as long since I begged for more involvement from absolutely anyone, in case I died from breast cancer. I didn’t want my kid not to have family.

    How is it possible to think disliking me can justify dishonoring her so badly? I expect dislike — I divorced. I left. I quit because of why I quit. Even now, I won’t blab other than my side. I TOTALLY LEFT and have been thanked for over a decade for doing so.

    She was always on the table to snag & love & be a part of adoring together or separately. Not only were you invited; you literally only ever considered how YOU felt, Chef.

    You played nice Uncle every other weekend until someone was finally old enough to feel slightly different or oppositional or — human. You returned her early for football games on TV.

    If she got sick; she had to drive to Delaware because “I don’t know what to do so I’m taking her halfway home so you can take her to a doctor even though I have her insurance card in my wallet” was my experience with you as an EX.

    I’m not jealous you now have a house full of kids I desperately wanted to have. I’m not jealous because I know who “the head of the household” is. Being there ensured I didn’t do that longer than necessary.

    That failing; it broke her when she ran for support when I got my breast cancer diagnosis. Fixing crushing blows during life crises everyone is FULLY AWARE OF, isn’t always up to the kid.

    I arranged with the sous chef to get all the pancakes together. It failed so clearly I must somehow be a slut with no hair and chemo still flooding through me.

    Having backup kids doesn’t erase the OG. Not calling doesn’t mean you’re invisible; it means you chose absent over awkward.

    If this isn’t true; call me something other than a “slut.” I most definitely left this person & was remarried a few weeks after we divorced. Names don’t work on me.

    I’ve been called so much more creative names, Mrs. _. You’re not the sous chef I expected. No one expected you since you got introduced AFTER you shared the same last name as I once had and she still, unfortunately, does.

    Texted insults count and were screen shotted for a later date as you sent that to me on my way to oncology. I was a bit preoccupied to let you know then what I know now.

    My pancake drove 90 miles home crying because the other NEW pancake was knowingly instigating her upon first meeting — in spite of her meeting a house full of step-strangers & her feeling terrified of strangers.

    The “chef” defended the other pancake saying he was an asshole “because he is autistic, too.”🤦‍♀️ Dad chef then shared what she thought was a safe reply to “How do you like _?” to THAT pancake’s maker.

    That was the day when she first met all the pancakes, including her half pancake. She hasn’t seen him since and that is an ache the chef, not the batter. When the hell is the parent ever responsible?

    She lost her chef and half-pancake & it got blamed on the batter’s fault. “The batter is too familiar.” “You look just like the pancake I used to love.” “You sound just like the pancake you love and I’m informing you that since I didn’t like that part of her; I do not like that part of you, either.”

    The batter rises and falls like her mother so that was enough.

    I am many things. Some are awful & man do I work on those. A slut of a pancake with cancer & care, though? That’s not a thing.

    There are no sluts in parenting. There are, however, toxic humans not worthy of ever flipping my pancake. That choice is not up to me and my influence only ever encouraged her to call. Looks like I was actually helping the cause, Mr & Mrs _.

    I do hope my daughter changes her last name to whatever she wants it to be. I’m pushing for “Princess Consuela Banana Hammock.”

    Hey Chef, you outright bailed during cancer only you left my kid. She is the one who wanted to be closer to you. I literally didn’t say anything against you until long after adulthood. I kept my internal pact with myself. “I will keep her as close as possible even if I move on; even if I don’t love ___ anymore and don’t trust him with protecting my future.”

    My quiet has only benefited lies other people said.

    No more quiet.

  • At Age 15, Montel Williams Said I Knew all about FORGIVENESS

    This is me at age 11. This would be the last time I wore a fitting tank top or jeans until I became a mother because I was not prepared for men.

    This week has been challenging. My family is transitioning back into roles that we used to do differently. Transitions are always difficult for me.

    I’m now far more solo with cancer stuff and I’m still sick (and now have Covid) so my fear is something I have to barrel through. I am worn down, lonely, and tired of succeeding while looking at the same four walls and confused pets.

    My war-torn kiddo is in her senior year of college & all of the feelings that go with school; graduation, her future, and — the mom she stopped her life for to make sure she could ONLY worry about life-saving things that were so obligatory — the drive to succeed was always force-felt by all.

    A lot of cancer and ugly diagnoses made me have to barrel through feelings I hate but had to decide not to honor because I HAD to survive. Survival mode is very black & white.

    That is placing me at risk of growing a callous to how difficult everyday life is for everyone else.

    This is also very hypocritical of me because I know full well how difficult real, everyday life is; period.

    That is something I need to put in check IMMEDIATELY because, before long; I’ll be the person who compares traumas like traumas are comparable.

    (more…)
  • Peter Charming & the Plastic Egg

    Take a walk back to 1986 in a Philadelphia suburb. The first home my parents bought was when I was age seven. In a much younger mind, I saw houses right next to each other and knew that trick-or-treating would be much easier in a row home. We had been living on a busy street; the kind of street where you refuse to let your cat go outside – just in case.

     

    The house they found backed up to woods with trails that led to the Neshaminy River eventually. What we waded in was a stream that took you to the best fishing spot. I loved the spot because it was four feet deep and I could see the bottom; ensuring I wasn’t afraid of it. In the eight years I lived in that house, I caught significantly more poison ivy than fish. I did not like fish, so I was solely there for the company I was always with.

     

    The neighborhood was made up of one circle, apart from one small street with eight houses. The houses were grouped into two sets of four houses. Our new house would be on the end, meaning we had three more windows at our disposal. The end house on a group of row homes feels like extra elbow room, somehow. The top floor, dining area, and living room all had one extra window. As I got older, those extra windows were the difference between living in a row home and living in a “townhouse.” 

     

    After walking the trails and seeing a tennis court-turned skate park behind our house, the house didn’t matter to me. The row home was nothing special. It was five levels, with one or two rooms on each level. I remember thinking what a cool idea that was, back then. “The living room is its own FLOOR!” It was a 1.5 bath, three bedroom, 1100 square foot pit stop to the best outdoor adventure I could imagine.

     

    My room was on the very top floor. While all the other bedrooms had full-sized windows, my windows were shorter; the kind you often see in a basement. The house had a flat roof, so the windows made sense to whatever 1970s architect created that home. It should be noted that the ONLY access to the roof was through my bedroom. 

     

    From June through September, the last place you wanted to be was on top of my tarred, flat roof. Next to the sun, or 1985’s George Michael, it was the hottest thing a person could ever experience.

    The wise people had white on the top, making it abrasive, but less sole burning. We had the kind of tar roof that would eventually collapse into my parents’ bedroom, and onto my dad’s computer. If you had a computer in the 1980s, they weren’t cheap and usually meant you had a special protector for your shirt pocket.

    Back to 1986. If you looked at the set of row homes I lived in, my house was the one capping the left side of the group of houses. On the right side of the set was another house that neighbored the woods where I’d spend most of my innocent elementary school years exploring; and only once accidentally setting on fire. This house seemed mysterious to me. Looking back now, I know it’s only because the trees surrounding the back and side of it made it feel dark, especially compared to mine.

     

    In that house was the Charming family. There was; Mom, a baby daughter, a son named Peter, and a husband who left soon after we moved in. (I do not think the two events are correlated.) When I was seven, Peter was also seven. To me; he looked like he was six feet tall and was one of the first boys I had ever seen that I thought my Barbie would approve of since her opinion meant everything in 1986.

     

    I remember the Charming’s had a gorgeous Doberman. They crated him outside constantly. I think it was the first time I felt true rage at another human, concerning animal treatment. I’d like to resurrect that dog so I could save him from Mr. Charming.

     

    I was afraid of Mr. Charming. I don’t remember his first name, but I remember his dog’s name; that 100-pound Doberman’s name was Red. Red must have been cold a lot. Between how he left his dog outside constantly and how I could hear his voice resonating a few houses away from my bedroom, I knew Mr. Charming was anything but what his last name suggested. Eventually, he left.

     

    I do not recall seeing him again afterward. What I do recall is that Red was allowed inside the house on a much more frequent basis. Eventually, the large crate, the size of a shed, was used as storage and not as a cruel cage for a guard dog who wasn’t allowed to do more than bark and be miserable.

     

    When Mr. Charming left, I remember his kids being outside more often. Before long, Peter was a part of my daily life. I always wondered if he was friends with me or if he was friends with my sibling. It didn’t really matter to me because I got to see him almost every day. I remember always being excited to see him, but having that “itch” to run away from him whenever he talked to me with no one else nearby. 

     

    It turns out, that if I couldn’t script a conversation, even as a kid, it didn’t matter if I had a crush on you or not; I would stumble all over myself until I found an exit.

     

    As we got older, Peter and I figured out that both of our bedrooms had roof access. We stopped using the front door for one another unless it was for something official. That six-foot-tall elementary school kid braved the hot, tarred roof and ran across the houses to tell me to put my radio on a certain station if he wanted me to hear a song. He’d walk through a dusting of snow to see if it was safe to sit on top of our houses and not talk while sitting on his sister’s comforter.

     

    I knew a few things about Peter, over time. Peter liked me more than he liked my sibling and Peter could not tell believable lies. 

     

    One Sunday, Peter didn’t use the roof to get in touch with me. A bright red Peter rang my actual doorbell to get my attention. There we were, in all of our fourth-grade glory, standing on my front porch for the whole dead-end street to see. Peter rang the doorbell for me and me alone. While I don’t have an eidetic memory, I will never forget the ring he handed me nor the story he told me when he gave me the first present I was ever given that confused the hell out of me.

     

    “My mom gave me her credit card to use. I wanted to get you this ring. Here.” 

    The subtle poetry of his words was gift enough, but to give me a ring that was so expensive it needed a credit card; I didn’t know if I’d ever feel a high higher than that feeling. He pulled his hand out of his pocket so he could hand me a ruby ring, set in gold, with six prongs holding in the stone. I knew enough of jewelry to know that people add extra prongs onto rings to make sure the precious stone doesn’t accidentally fall out. My ring had SIX prongs.

     

    My ring also didn’t come out of a jewelry store box, which made it unique. Jewelry store boxes are cardboard and don’t let you see what’s inside. My Peter found the only jewelry store in town that gave fine jewelry to their customers in a grocery store coin machine plastic egg.

     

    Standing on the porch that day, I knew not to shower with that ring on my finger or my finger would turn swamp green. I also knew that instead of a ring in that plastic egg, the egg could have held a toy or gum or whatever else the grocery store had in those machines that Sunday. Peter “used his mom’s credit card” to buy me what his words couldn’t say and mine couldn’t either. Peter spent a quarter to say, “I like you.”

    I never hinted that I knew he lied straight to my face. I didn’t want to take away his ten seconds of bravery. In fourth grade, ten seconds of bravery PLUS using a doorbell instead of a roof window made up one the bravest six-foot-tall elementary school students alive.

     

    As fast as he sprinted over to give me his token of undying like, he sprinted back home. Through the years I spent on that street, Peter never so much as snuck a peck on the cheek. He never once behaved in any way that did anything but make me smile as I remembered how much he meant to me.

     

    Side Note: I’d like to think that he replayed that story a few times over in his mind and perfected it before he proposed to whomever he eventually married. God, I hope so.

     

    I have been given a few more rings since the fourth grade. Some rings came with history. Some rings got paid for with a credit card, even. I can safely say, though; that I don’t think I will ever be given another ring paid for with Ms. Charming’s credit card and given to me in a plastic egg. Thank you, Peter. You may never know how much that white lie meant to me.

  • My Breast Cancer Journey Thus Far … including the WTF is this autoimmune disease???

    INVASIVE DUCTAL CARCINOMA

    1/6/23:

    My dog pulled me into a tree and I hit it with my head & (R) collar bone. I lost consciousness for less than 10 seconds. My body slammed on the frozen ground and I developed significant neck and body pain.

    Later that night, I attempted to stand and fainted, falling face-first, onto the hardwood floor. I developed a massive egg over my (R) eyebrow.

    1/9/23:

    Imaging of my shoulder and wrist appeared normal. No MRI was performed. I reported back to my NP.

    1/25/23:

    The injury appeared to cause spasms from head to toe, mainly in the back/abdomen/face/hands. UMMC has records of this ER trip. They wanted to admit me but not let Tim stay with me.

    1/27/23:

    Returned to the ER with worsening symptoms.

    1/29/23:

    Saw my NP who must not have read the notes from 1/25/23 where they did a massive workup that showed body trauma from the tree injury on 1/6/23.

    I was started on anxiety meds because suddenly I was agitated, falling, and fearful. I was treated like a psych patient, not a patient with two head injuries.

    From March until July, I tried to manage unrelenting pain. I was also in the ER so many times I lost track. I lost faith. I am autistic so explaining myself when I’m doubled over is next to impossible.

    I also was losing weight, pacing nonstop, and could not stop rubbing my collar bones. I had such breast pain that I felt embarrassed constantly having to massage myself.

    In July 2023, I demanded my NP reorder a mammogram because a lump that I had a mammogram for on 5/2022 had moved or grown. It turns out that the lump *I* felt was actually a severe spasm in my pec minor that was worsening with whatever condition got unlocked from the head injury on 1/6/23.

    During the spring & summer of 2023, my NP was treating my anxiety & muscle spasms, but ordered no more imaging. I had an allergy to one of the medications. I was VERY foggy and on high doses of steroids to try to decrease the inflammation. It was breaking my mind and ability to sleep or find rest.

    7/26/23:

    My body was so compressed from the tree injury that caused Complex Regional Pain Syndrome, my rib cage went from 34″ to 28″ and my facial bones felt like they were shifting. I could see the vein on the side of my temple and it felt like the cartilage in my nose was collapsing. Negative facial x-ray on 7/26/23.

    By the end of that month, I was so confused, only my husband spoke to the PCP in charge of my NP. She was on vacation. I was told to leave the practice because I was “unhappy” with their care. I had to urgently find a PCP and went to Patient First (urgent care) so my medical records were safe.

    8/2/23:

    Mammogram completed, showing a distortion requiring biopsy.

    8/20/23:

    I found a new PCP who looked at me seriously. She believed I qualified for all of the major clinical manifestations of Relapsing Polychondritis. My trachea, ears, and other areas were impacted, making her diagnosis sound. She started me on Prednisone 50 mg/day and eventually added a benzodiazepine to the Prednisone because it made me an emotional rage monster.

    9/6/23:

    Pain Management was started. This included neck and hip injections of cortisone. Meds ordered were Gabapentin (for “sudden onset” Raynaud’s Phenomenon), Methocarbamol (muscle relaxer), Oxycodone (Opiate), and eventually Morphine 15 mg twice a day. Pain management is a monthly appointment.

    9/28/23:

    Biopsy performed.

    9/29/23:

    Bariatric surgeon at GBMC insisted I had a hernia & performed laparoscopic surgery. No hernia was found, but no intussusception was found then OR when it was also seen at Penn during my allergy to chemotherapy.

    10/2/23:

    I met with a rheumatologist (Dr. Hosny in Wilmington, DE) who ordered basic lab panels and took me down off of a 50 mg/day steroid dose to none. This took a few months. Off of steroids, I felt significantly less agitated, but my pain was becoming out of control.

    Rheumatology said, “It sounds like either Complex Regional Pain Syndrome or Hypermobile Ehler’s Danlos Syndrome. I do not treat either. Best of luck.”

    I jumped right into cancer-land so that had to have a pin put in it.

    Before I put a pin in it, I saw ENT, Pulmonology, and Rothman Orthopaedics in Philly. I wanted to know if I had 5-8 years to live. I was terrified.

    10/5/23:

    Biopsy confirmed Invasive Ductal Carcinoma in (L) breast. Stage 1, but with an oncotype of 27% so I had to do chemotherapy before radiation.

    I interviewed a local hospital, but had to factor in my Pectus Excavatum birth defect so I knew Penn’s Proton Radiation was for me. I hoped that by going directly to Penn Medical, I’d have fewer hoops to jump through to qualify for Proton.

    11/15/23:

    I had a partial mastectomy with clean margins.

    12/29/23:

    Chemo First Round. No nausea. All hair fell out by 1/16/23. 10/10 Skin pain, and neuropathy in my fingers was so bad, I couldn’t type.

    1/19/23:

    Chemo Second Round. This round was almost immediately different. My legs felt heavy. I began swelling in my face and throat and knew I was experiencing anaphylaxis. I was also 10 lbs heavier than I was when I started chemotherapy. I was in trouble.

    1/21/23: I was admitted to Penn for six days for an allergy to taxanes. At first, we didn’t know if it was a taxane allergy or an allergy to Neulasta. The other chemotherapy option that didn’t include taxanes, was too similar to the regimen I was on so that wasn’t an option.

    My oncoptype score was 27% and I felt grief that I wasn’t able to give myself more of a protective barrier than I could have if I had finished all the rounds ordered. I had to get over that.

    My hands almost split open from compartment syndrome. Chemotherapy was killing me, so it was no longer a benefit. I now have half-fingernails because they peeled off from the top down. I still have complications from chemo. I still suffer brain-fog, feel slower cognitively, and now have scar tissue from multiple surgeries.

    4/15 – 5/13:

    PROTON Radiation begins. Burns do not appear until the end of week 1. Total exhaustion followed. I slept most of the month. My allergist was actively working with radiology until I was placed in the care of Dr. White in endocrinology.

    She and I both believe that I have an underlying autoimmune condition that either emerged when I hit the tree in January of 2023 OR just happened to be horrific timing and had to be dealt with SIMULTANEOUSLY during cancer treatments.

    I see a Penn rheumatologist in September, but am hoping to be seen sooner. I have nodules all over my skin and I feel like my muscles become stone if I stop massaging them.

    I have been on a hydrocortisone taper since radiation because my adrenal system isn’t functioning. My last Cortisol draw was 1.2.

    No matter what; I WILL NOT QUIT.

  • 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.