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.
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.
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 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.
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.