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.
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.
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.”
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.
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.
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.
“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.
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.
Weary and pale, the Queen and her army scratch and claw onward; some screaming on the outside, others on the inside. Cancer won’t win here, but it will challenge our makeup and create an immediate pivoting of priorities. Hold your cancer champs closely. I truly never knew.
We are our way to the oncologist at Penn. This isn’t just a second opinion.
I’m someone whose body would reject an implant and radiation would create such a scar that hEDS would never tolerate it.
I NEED an advocate to demand Cigna pay for “experimental” proton radiation. Surgery, be it lumpectomy or mastectomy is guaranteed. My grief is exponential.
Penn is rumored to have an agreement with Helen Graham Cancer center at CCHS, so I am asking for prayers that the CORRECT oncology team for me is obvious, easy, and doesn’t drain more time.
I went from barely leaving the house to filling my tank a few times a week. The little energy I have goes outside my home. Life means that my kid has to work and love demands she take a full course load next semester.
I’ll be doing radiation alone, primarily, which doesn’t mean I’m anyone other than the millions of others who also do that. I’m an admitted chicken.
This drains every resource we have, but let me tell you where God is all over this … My family has never been closer in terms of understanding one another and how to support each other.
My chosen family continues to grow.
Healing has restored friendships and displaced others.
My mom is proud of me.
Vanity, sarcasm, and my penchant to hyper focus on the past have all but fled a body failing me.
I don’t sleep much or well, but I feel like a cowardly giant in terms of my integrity and openness.
Some wonder why I live a life of exposure and I can only say that it holds me accountable. It shows the lows so the highs are the celebration of a community desperately seeking joy.
It shows forgiveness in spite of apology and change; even change started out of spite, can be permanent and true.
I lost every minor social encounter since around Covid. As the world healed, my quarantine never stopped.
It turns out, I adore videography, photography, and editing. If God heals this neuropathy and I can feel my fingers again, I hope to improve.
I want to write. I want to save the world and buy them a Coke and hold hands across America and sing We Are the world. I want to pretend one evil man didn’t divide our country. I want to get over it. I want all to feel loved, seen, and valued for exactly the unique human they are. I want them to feel the love of God without intention or malice.
I want to hide and only seek the Misfits. I’m good at loving misfits. I am now in a position of humility with a weird condition making cancer even more complicated and painful. I am a misfit playing grown up, but my ability to mask exhaustion and autism gets more difficult as waves of loss and fear strike home.
Home didn’t feel safe because I had a rageful, grief-driven, humiliation mixed with misunderstanding, meds that would give Dwayne Johnson roid rage, and a crew that watched me dying and becoming nothing as no one watched, but everyone observed.
It’s been almost eleven months of head injury/whiplash investigation plus connective tissue disease work SUDDENLY getting hit by cancer. Maybe cancer explains a lot. Maybe it’s just another thing.
I’m the girl that pain management looks at and says that the opioid epidemic doesn’t apply to me. I get hugs from mean providers who make me call them, “Stephen,” or “Michael.”
I’m a zebra who saw a horse NP and my complicated zebra problems got missed … historically by all. If you hear hoofs, think horse not zebra.
I’m a zebra with cancer. Cancer isn’t cheap and hospitals who charge for parking are monsters.
Angels have shown up and not a soul who has had cancer has not hugged me immediately upon meeting me and learning I’m new to the club. Miss Y’vonne, I mean you. Shelley Krier Stewart, God gave me you after loving me by your mom.
Defeated, weary, broke, and broken down soldiers follow me and have changed their lives for one thing cruelty and love have given me: FORTITUDE GRATITUDE TENACITY
A dear follower made this for me to inspire me. My crown is now less likely to slip. ♥️
On September 28, 2023 I had to have titanium markers placed in my left breast. They also took several biopsies. On October 5, 2023, I was out of state helping a friend and I was told to immediately get to my doctor. I already knew.
I have Invasive Ductal Carcinoma.
So I have HER2-negative cancer. This is great news in Cancerland, by far the worst amusement park until MAGA comes up with one and there’s a Kid Rock soundtrack on just loudly enough to irk you.
What HER2-negative means If breast cancer cells do not have abnormal levels of HER2 proteins, the breast cancer is considered HER2-negative.
Even if your cancer is HER2-negative, it may still be estrogen-positive or progesterone-positive. Whether or not it’s hormone-positive also affects your treatment options.
What HER2-negative means If breast cancer cells do not have abnormal levels of HER2 proteins, the breast cancer is considered HER2-negative.
Even if your cancer is HER2-negative, it may still be estrogen-positive or progesterone-positive. Whether or not it’s hormone-positive also affects your treatment options.
It involves hormone blockers, then chemo or radiation after lumpectomy and if I’m likely to have either an immediate implant or I may wake with no breast. The PET scan will show how my recent abdominal surgery has healed.
Hormone blockers can cause intense pain, per my first oncologist (I’m interviewing), so given my medical condition, I’m not sure what that looks like.
Staging only occurs after MRI of the breasts and ducts and lymph nodes. There’s been so much pain and rubbing, I’m a bit scared.
This particular surgery team has a rib and sternum team, and thoracic can make decisions about fixing my pectus excravatum when she’s in there or look to see it gets done.
Queen Buttercup Speaks 