it happened

Well, it happened. My tumor grew back. So now, I have some decisions to make. I’ve been waiting for this shoe to drop, waiting for the next step in this horror-esque version of my life.

I have an appointment Friday with my neurosurgeon to see if it is even operable at this point and what it would mean, what it looks like, etc… from his perspective and knowledge. (Yes, I’m entertaining it, but I really don’t want to have another brain surgery).

I have another appointment Tuesday 6/17 to go over my chemotherapy options with my neuro oncology team. This is likely the route I’ll go.

It is currently 4:30AM and I’m terrified. I haven’t slept well this evening because I don’t know what to do with what this means. What the risks are. What it all will take. I’m terrified to be made sick again by meds. Terrified to lose even more of myself. Terrified to be bedridden even on my best days.

I’ve done this before and I know what it takes and that’s half the battle for me. I’m hoping I can find peace within my decisions that I make now. My symptoms are returning once again (the weakness and numbness, the word jumbling, comprehension issues).

I’ve felt like this has been happening or going to happen for a month. I just didn’t realize I’d be right. I try not to be cynical, but it’s really hard not to when you have a ticking time bomb in your brain.

I’ll leave you here for now. Update y’all next week for sure.

an update

Today I had a doctor appointment where I was informed that the chemo cycle I start tomorrow is my last one. I will continue on doing immunotherapy and getting scans, but chemotherapy is over.

I’m really not sure how I feel. I feel kind of listless and incredibly freaked out and scared that it could make room for growth to occur.

I’m not sure what to feel or think or do. I just am doing the best I can to absorb this news.

ease

I’ve been longing lately for something to feel easy. Life hasn’t felt easy. It has felt like an uphill battle. Everything lately has felt messy and hard. Even yesterday, another challenging day where I sat at the hospital for three hours for a treatment that involved me getting poked by three different needles searching for a viable vein. I’m so tired.

If I had less ambition and will to survive as long as possible, I’d give up these treatments just to figure out how to find some ease in my life.

I guess I’m just lost on how to move forward. I’m just lost lately. There’s too much all the damn time and sometimes I just wanna pack it all up and stop all the fucking noise. Even then, I’m sure I’d still have noise from people begging me to change my mind. It’s just hard. I’m just stuck in a space between the feeling of living life for me and living for others. I don’t want to fucking care anymore about what others want from me, but here I am, caring. It’s hard to remove them from the equation and make a decision for just myself.

I wish it was easier. I wish everything was easier. But I guess that’s what I’ve learned in my life, nothing comes easily, especially when it is meant for you. You have to fight for what you need, want, etc…. Advocating for yourself and what you need or want is just part of the fight to stay alive and true to yourself.

It just feels so hard all the damn time. I don’t know if I can keep up, but I’m trying.

future forward

Well hello to my friends and family, and well, any stranger that has decided to find themselves here.

I woke up Monday morning to news that there is no growth and after a year of uncertainty and deep grief, I decided to live in a way I haven’t been living. A way that allows me to see a future. I don’t know how it came about, but I’m here.

I attended my therapies and appointments and by Wednesday, I was emailing my school to see if I could come back and finish my degree. I don’t know if I’ll do anything with it. I don’t know if I’ll be able to become a therapist. I don’t know anything, except that I want to have a future and I’m done giving into the notion that it’s impossible.

I booked trips to California, New York, Hawaii. I got tickets to see three of my favorite bands (Pom Pom Squad, Rilo Kiley, and, of course, Lucy Dacus), as well as tickets to see Oh, Mary! Cole Escola is a genius and I cannot wait to go see their masterpiece.

I woke up at six this morning and registered for my next class. I talked to my counselor about grad school.

As I shut the chapter on the past year of my life, I find myself invigorated and ready to make my life feel full again.

I haven’t felt much like I could look forward without acknowledging the extreme grief I’ve been experiencing until now. I find myself feeling like I’m holding all these different realities of what can be. For now, I will keep trying to find future. One that I can be proud of.

The legacy I want to leave doesn’t just exist in the pages of this blog, but in the memories that others have of me and me forfeiting early isn’t something I ever want to be associated with. I will live as much as I can. I will rest when needed. But for now, and maybe for the first time since last year, I feel like there’s more for me yet.

Bye 2024

Ah, the holidays…in 2023, I huddled in my apartment with one of my best friends, Melanie, and just watched bad Christmas movies. This year I made a point to make space to celebrate.

It is pretty weird to experience a holiday with the undertone of “will this be my last Christmas?” (I hope not. I really hope not.) I decided to go all out. I got a real Christmas tree. Technically, I had two because I cut down the most pathetic tree on Mount Hood I could find with a $5 permit. It was so much fun as an experience, but I think if I had more stamina & snow shoes, I probably would have been able to find something better. I got gifts and went to a Christmas Eve party at one of my best friend’s (Francesca, or French Jessica, as I like to call her) family home. My Christmas was cozy and spent with my younger sibling and mom at my apartment, surrounded by animals and snacks.

I did unfortunately end up having the shingles virus start acting up on the night of Christmas which sent me to the ER three times over the past few weeks. So I’ve been playing Animal Crossing and doing diamond art while watching TV to pass the time.

On New Year’s Eve, my normal reflections weren’t really anything about setting goals, but rather setting the intention to make it to 2026, stronger and kinder with better boundaries and more skills.

A few months ago I had a reading that said that I needed to change my focus from growth to allowing myself to feel my feelings and I think I’ve been doing that. It’s really hard not to put focus on growth because that’s all I’ve been doing for the past five years. Facing the harder parts of the path I’ve been on is scary. A lot of what I’ve been writing lately acknowledges the fear and devastation I feel, but I don’t know how to express it in a way that helps me feel any release.

I think the fact of the matter is that I can see the child version of myself and that part of me is just terrified with no idea how to navigate any of it. I wish I could hold her and tell her it’s going to be okay, but it would be a lie to say that. It would sugar coat the reality and I can’t (in my current self) swallow something that feels false.

When I look at myself in the mirror all I can see is the scared five year old me looking for any comfort in this hellish tragedy. I feel small and alone. It’s really hard to be in that space for any amount of time, but it’s what I feel. I know what’s coming down the line, but I just can’t see it yet. Waiting for the other shoe to drop & anticipating the next part of this is really a consuming part of the place I’m in.

As I look back on the year I’ve had, I honestly didn’t know how to survive at any point of this, but I did. I survived it. That’s something I can be proud of, but what I’m proud of most is that I have been vulnerable. It’s a hard skill to acquire because it is so revealing, but being able to actually present my feelings honestly feels liberating. I am not scared to talk about the “taboo” subject that was thrust upon me this year. Facing your mortality is terrifying. Talking about death is a really hard subject and so many people shy away from it because of the discomfort it brings. Anticipatory grief is real and acknowledging it is a gift that I gave myself. Those who have engaged in conversations about it with me have given me great perspective and a feeling of camaraderie in the hardest time of my life. Being able to actually grieve together is a gift. The thing that scares me most is not being here after I’m gone to hold the people I love in this life. I want to be here now and allow space for vulnerability about how hard this and everything else is. I want to engage in conversation more than the standard small talk of “how are you?” I want to spend every last moment I have intentionally with my loved ones.

As a reminder & note: please, don’t shy away from messaging me about anything because at the end of the day I just want to share with my people in their experiences and mine. So many people tell me they are here for me, but I am not sure i’ve made it clear that I’m here for you too.

HNY, KB

gimme a break

I’m sitting in an extremely comfy chair in the hospital waiting for my Keytruda infusion. Every six weeks, I get poked and prodded to try and find a viable vein for an IV and bloodwork and today’s appointment was no exception.

Truth be told, I am exhausted. I’m tired of bloodwork, needles, and pills. I’m tired of not being able to sleep the way I used to. I am tired of body aches and pains. I am especially tired of bad things happening.

I’m tired of drama, conversations where people are not kind or gentle about what I am going through. I am so tired. I’m tired of the way things have been going for me. It’s been non-stop for as long as I can remember.

I know so many people go through their own trials and tribulations and I’m not the center of the world, but man, my story is long and complicated and full of so much hurt. I hate that this is the reality that I am stuck with. It feels like just a series of disappointments and unfortunate events with very few moments where I’ve been able to breathe easy.

I have to wonder if this is all some sort of punishment from a former life because I cannot fathom a reality where I deserve all this pain. I feel especially why me today, especially after the week I have had. None of this feels just and I am just sick of feeling this way. I don’t want to be upset or angry. I just want to move forward, but I get so stuck in this mentality every time something is challenging my normal go-with-the-flow attitude.

I just want a break from all the difficulties that life has and will continue to throw at me.

I keep trying to draw my attention back to what is going good.

Dusty is doing well after his surgery. My vet is going to make him their shop cat once I get too a point I cannot care for him further.

My nurse this morning told me that my chart is full of notes that tell whoever attends to me that I’m lovely toward everyone that interacts with me. It reminds me of how much I gushed my admiration for alll my care takers in the hospital.

It may not be much, but being known for how kind I am to others is a huge accomplishment.

Anyway, hoping for better soon.

the time is now

Lately, all I think about is how speechless I am all the time. I’m trying so hard to live. I’m trying so hard to move forward & yet, time stands still in so many ways. I feel like I’m held hostage by my diagnosis. I live in two month increments. But I’ve been doing things that scare me. Like saying how I feel in these blogs or out loud to the people who I need to hear me. I reported that doctor who made me feel like a statistic and got a new one. I’ve been taking chances with putting myself out there. I am on ~*the apps*~ as they say. I asked someone out today. I don’t know if it’s anything more, but it’s progress. I’m living more, but I still feel landlocked by this disease. And this is where I begin to feel speechless. The “what ifs” of this disease make me descend into a depression. A lonely world that I inhabit all the time. It’s a real shame to be so stuck in space while trying to move forward with your life.

I want so much to look to the horizon and see the possibilities that I saw for myself before. I want to know how to exist in that world again. Maybe it just takes more time. I don’t know, but then again how much time do I have? I can’t afford to waste a moment. I just can’t. It’s do or die almost all of the time for me.

I used to have this piece of wall art from this artist that said “everything will work out” with a hand that has its fingers crossed. I took it down and put it away. I replaced it with a print stating “one day at a time.” That’s really all I have. The horizon, the future…. Who knows? I certainly do not. This day, this hour, this minute. That’s what I have. I have now. It doesn’t feel like enough, but it will have to do.

vulnerabilities

I never know where to begin with these entries. Lately I’m just trying to start up my life again. I’ve been spending more time with people that I love and care for. Spending more time breathing easy.

The last scan that I had on November 8th turned out to be better than I could have imagined. The cavity is shrinking, there was no growth, and the concerning tissue they’ve been monitoring just vanished. We are almost six months from when I finished my more intensive round of chemo and radiation and it seems like it’s working for now. It feels good, but I think I’m always waiting for the shoe to drop. My next scan will be on January 4th with results coming January 8th. I’m eager to get through this holiday season & experience what’s next.

The holidays are a slow down for me, always, but this past year even more. Last year I spent a lot of time alone. I isolated myself purposefully because I was so embarrassed of all that I had been through that year in my relationship. I hid from everyone because I didn’t want to feel the pity or sorrow about the dissolution of my last relationship. I was scared to find judgement in people around me. I really struggled with accepting community support due to the embarrassment I carried. I thought I’d be looked at with pity or maybe someone would give me a hard time when it was hard enough for me to wake up every day. So I isolated myself. I pushed people away and I hid from what I really needed: community and support.

I have thought about that period of the past year quite a bit because in the juxtaposition of where I’m at now, I don’t recognize myself. I was so unwilling to be open during that season of my life and now, all I can do and imagine doing is being open with how I feel.

How is anyone built to do anything alone in this life? I think America is very skewed in the way society tells us to experience big moments in life. I think the individualistic culture tends to isolate us in the way we feel and we are taught to self soothe and not accept the help or love we deserve in our harder moments. It’s been a hard journey to work through these parts of my life in isolation. I receive so much support in so many ways, but having cancer is isolating. The only way I know how to fight it is to talk about what it’s like. These words are more than random pairings for me. These words are my truth. They encompass my experience and gift me with growth and strength. It gifts me with the ability to be seen and heard. By speaking my truth, it ushers in the support that I’ve been needing from not only who reads this and encourages me, but the support I have gained from myself. Allowing myself the space to write about this experience has brought me strength.

I think it is so vital to tell our stories. Cautionary tale or not, it’s important to talk about your experiences because on some level, they will hopefully be found at a time when it was needed by someone who needs to hear your story.

I remember this art page I followed years ago that I found in stumbleupon. It was a woman named Asia who wrote love letters as an art project. She wrote I think in total 300 love letters to family, friends, herself, and others. When I found that site it softened me in a way I don’t fully know how to express. I’ve always been a romantic in ways, but reading these letters to different parts of her community made me truly curious about what love really is to people. She told her stories through these letters. The different layers of these letters showed her relationships and how they were changing daily. She chose vulnerability over shame for the things that were her deepest disappointments in life. And all that vulnerability led to a deeply supportive community.

I hope that my vulnerabilities can allow for something more for me. I hope it can open a door for others who are burdened by heartbreaks and others judgments. I hope that in some small way, these blogs I write can impact someone like me or maybe not like me at all. Just hoping that there is purpose for these words of mine.

feeling safe

I reconnected with the first woman I dated recently and it’s stirred something in me. This person in my life, in every iteration of our relationship, has always made me feel safe and supported in ways I didn’t know that I deserved. Tonight it dawned on me that I am so willing to trust her as a safe space/person, but I rarely feel safe with myself these days. Maybe it’s because the body I am in & the time I spend thinking about what it’s going to do to me in the coming (hopefully) years.

I think it’s also because of everything I’ve experienced over the past few years. I tried to date someone who used me and threw me away like I meant nothing to them after ten years of best friendship. Then I rebounded hard to my abusive ex who tore me down constantly. They took away my power and robbed me of my trust for my intuition.

I think I’m scared to trust myself to make the right decisions a lot of the time. I’m scared shitless to trust others, to feel safe with others so much that I don’t feel safe with my decisions in regard to finding the type of companionship I crave. The safety and protection I feel from my now friend has brought up a lot of the hurt I’ve experienced from putting myself in unsafe situations with former friends and romantic partners.

I realize this is less about anyone else and more about me right now. It’s about how much I want to trust myself to make a decision that won’t end up with me hurting again on top of all the already difficult stuff I deal with. It’s about how much I want to feel safe with myself again - safe in my skin. I’m not sure I’ll ever have that feeling again.

Whatever happens, I hope I can find it within myself to appreciate the body I have and not feel as if it’s hurting me. I hope I can find love for my body and all it’s carried me through in life. I’m hopeful.

February & March

February

February is a long set of appointments, tests, and prep. Plus, I had to move because my quarters weren’t ADA friendly and I had lost my ability to walk. My younger sibling moved in with me to be my caretaker. (Shout out Will!). More MRIs, bloodwork, treatments, and so much medication. I wasn’t very nervous leading up to surgery because there wasn’t enough time to allow for it.

The hardest day in February that I can remember was when I had to fill out all the what-happens-if-something-bad-happens paperwork. I had to sit my family down and tell them what I wanted for my funeral, how I wanted to be cremated and laid to rest somewhere that is significant for me. I remember my dad’s face mostly. How hard he was trying to not cry picturing a day where he would have to say goodbye. It broke my heart. Most of my worries at this point were about my parents and what would happen when I leave.

Surgery

The day of surgery comes and I get operated on. I woke up maybe 4 hours later yelling for pudding. They make me blow on some thing that I’ve seen in Grey’s Anatomy a million times and then I get sent to a very annoying ICU evening where I’m awoken every 2 hours for labs and evaluation.

I’m in the hospital a total of 3 nights. I can walk again, use my arm and hand again, I have speech issues due to inflammation, but other than that I’m 100%. They tell me my pathology is going to take 2-3 weeks and so I wait.

March

My first outing was two days post hospital exit. I went to Bob’s Red Mill for breakfast with Francesca, her mom, and my parents. I got the best blueberry pancakes and a coffee. I felt like such an overachiever being out and about so early on in my recovery.

Once a week, I was visited by different types of therapists in my home. By the end of the first week, I could shower by myself. Week 2 I was speaking in full sentences without issues with word fog unless I was sleepy. By the 3rd week, I was walking well enough that I didn’t need help with stairs. I got to ditch my walker by April.

I felt like an anomaly. I conquered recovery and that had me feeling like I could do anything.

Neurosurgeon VS Neurosurgeon

Neurosurgeon #1, Monday:

The meeting with the neurologist was grim. The tumor itself is ugly. It’s this 4x3cm tumor with a 6x5cm cyst around it. But in the scans it looks like it’s taken over a massive part of my left brain. She says that she thinks I’ll only get 20% of my functioning back - speech and movement. Says she does 3-4 tumor resections a month. I ask for a referral to another surgeon just to get a second opinion and she sends me to OHSU. I beg my dad to get on the next flight out to come help me. My mom and younger sibling too. Everyone comes out and the meeting is set for Friday.

Neurosurgeon #2, Friday:

This neurosurgeon is confident, but not egotistical. Truthful and fact-focused. He wasn’t concerned. Easy surgery, he says. Full restoration of my functioning, he says.

My family begging for answers asks about if he can tell if it’s benign or malignant. I know he can’t tell, but he just says he is not worried.

Surgery set for 2/29, 7A.

The MRI

I had always been healthy, for the most part. Short of the Covid weight gain, I was strong and healthy. So being in this whirring machine was strange. Eerie and loud fax machine noises buzzed around me. I couldn’t help but feel the fear what was going to be found while laying there.

An hour and a crappy sandwich later, my doctor came to check on me and deliver the news: they’d found a tumor. She said 6 millimeters or maybe it was centimeters, a cyst, neurosurgeon - after I had heard “you have a brain tumor” I kind of stopped listening.

I was promptly discharged and given an appointment with a neurosurgeon for the 29th, Monday. Kenzie picked me up, I called my parents and wailed about how I don’t know how I feel, but I’m scared. I asked my dad to participate in Monday’s virtual appointment with the Neurosurgeon so I wouldn’t be alone.

How it began…

My life was just starting. A few years prior in 2021, I had a reckoning with myself. I said enough pretending to be something I am not. I came out as a lesbian and went into therapy determined to find peace with myself. I found that therapy was my calling. I went back to school. I worked full time. I did so diligently and I worked hard at everything. I tried dating, putting myself out there. I put so much effort into my new life.

Then November 2023, I started to have some symptoms of carpal tunnel and I thought to myself: “I’m on the computer all the time and my desk set up isn’t ergonomic enough. Maybe that is all this is.” I bought all the wrist guards and accessories that were supposed to help. Then on December 5th, I stopped being able to hold a pen while trying to get through an intense statistics study session. I gaslighted, “your hand is probably tired. Just rest.” December 28th rolled around and I headed to the ER after what I know now was a focal seizure in my right arm occurred, but the triage nurse told me it was likely a pinched nerve.

In January, I was slurring my speech and getting drop foot. So I did what any woman in America living alone and scared would - I called my mom. I couldn’t decide if I should go to the ER. (Side note: please just go to the ER and don’t gaslight yourself because it’s “not that bad.” It is likely that bad.) I got picked up by my best friend, Kenzie, and we drove through a fast food restaurant on the way to the hospital since I had forgotten to eat due to the worry. 

Once in the ER, time moved slow for the twenty minutes it took to be called into triage. The triage nurse couldn’t believe how progressed my symptoms were and how long I had waited to get help even though I had tried and been told there was no point to being in the ER. She got me in immediately to a bed and a room where I sat with Kenzie and her daughter, Ramona, while we waiting for all the tests to be ready. I waited from 2PM until 8:30PM to get seen for the MRI.