welp
I guess here it is: I no longer think that social media is something I am interested in having. I made a bluesky account purely to announce new blogs and I added a mailing list to do the same on this blog’s landing page. I’m gonna delete all my other socials come February 28th. I’m not interested in allowing Zuck to profit from me and the ads he pushes. I’m not interested in allowing state run media into my life.
I am heartbroken about the loss of TikTok. It allowed me to find a community where it felt safe to explore my sexuality and ultimately helped me realize that I am a lesbian. It helped me learn things that I otherwise would have been blind to. It helped me explore new worlds, as it suggested new media to me. It helped me plan a beautiful trip for me and my best friends to go on to Europe. It helped me in so many more ways.
I know it’s not fully gone, but you should know that it will become a shell of the app that it once was.
The ban was never about China and safeguarding our info. This ban is about acquiring an app that is used to organize movements, to censor what we are allowed to see, and to promote the interests of the US. It will likely sell to Meta, or some American company, but at that point, it’s going to lose its value. Trump “saving” TikTok is basically a way for him to garner sympathy like the Reagan/Carter hostage release. I’m disgusted at what’s happening and I have such little energy to fight what is coming, but I would be remiss if I didn’t say something.
What is happening in this country is a nightmare and I am furious. We are spiraling toward a dictatorship and I’m scared for what is next. A lot of things happening have a very similar playbook to a certain mustachioed fascist. I am so upset that this world will be worse off when I leave it. Already horrible things are happening/being planned and it’s been hours since the inauguration.
I’m scared for my loved ones that aren’t safe in this world. My transgender loves, my visibly gay friends, my chosen family who are different in ethnicity than me, my disabled angels, and so many more will be impacted by this new administration and its laws. I’m scared to see and experience what’s coming. It’s utterly terrifying.
I don’t have much to say about the ways we can recover. I wish I knew what to do.
All I know is to be gentle to yourself and kind to others. So that’s what I’m trying to implement.
to all my nevers
This morning I was watching a TikTok and an older woman with grey hair graced my FYP. She was doing an OOTD and the audio was about how to really live life and what matters.
It dawned on me that I will likely never see a day where my hair starts to grey. I’ll likely never have the privilege of growing old and frail. I’ll likely never know what it feels like to tell my tales to my nieces. I may not even get the privilege of watching my nieces grow into their full selves. I’ll never have my own children. I’ll never be able to read them my favorite stories about Madeline and anything by Remy Charlip. I’ll likely never outlive my cats. I’ll never be able to hold them until they’re scraggly with gravelly meows. All the things that I will never have is something I rarely can grasp as there is so much that I haven’t been able to do. I have no idea what I will get to experience. I have no idea how life will go. In that same vein, I have no idea how death will go either.
I don’t know if anything I am saying feels profound in the face of the grief I am experiencing over all these little things. Well, they are not little, but you know what I mean. All these things - my ”nevers” - I hold them constantly. Sometimes I dream about what achieving these “nevers” would look like. I spend hours daydreaming of the life I could be living had I only realized things sooner or fought harder to achieve them. These things would be harder for me to achieve now and I’ve almost written them off all together at this point. I often wish I had a someday.
Someday — what a beautiful thought. A naïve one, but a beautiful one nonetheless.
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
let’s talk about hope
Today I said goodbye to the palliative care team I’ve been working with to navigate the main symptoms I deal with as a terminal person. I met with them every six weeks for symptom management and a great discussion about all that I’m enduring and how to navigate it.
Today I expressed a lot of frustration when it comes to the bright side thinking and celebration that people do whenever I have a clean scan or discuss my cancer experience with me. It’s a huge burden on me to navigate conversations skillfully surrounding hope. A lot of people overdramatize their positive reactions which makes me feel very like I need to perform or offer some sort of success story. I get frustrated because I shouldn’t have to hold that pressure on top of the immense pressure just to get up each day.
My palliative care team pointed out that I could be asking people “are you saying that for my benefit or for yours?” Maybe asking this question can open up for a more vulnerable conversation surrounding either my grief or yours. I would hope it would.
I think when people look on the bright side, I have this ick about it. Mostly because I feel like I’m being told I’m crazy for not being not excited or that it’s weird that I’m still grieving even during a win. I think the difference for me is that even though with a clean scan there is some joy, I still feel a heaviness that weighs on me about the looming terminal diagnosis that hangs over me all the time. I feel crazy in those moments for even having a reaction of “…but I’m still dying.”
I just want the acknowledgment I think. Maybe more of a “okay that’s happening and it’s great, but what’s next? What can I do to support you in the next two months until your next scan? What can we do to stuff joy into your life?” I think that sounds like what I need from others - some sort of collaboration on trying to find hope for the next steps. Planning art days, booking a class, going somewhere cool, getting a visit, things that don’t feel totally absent of moments to grieve, but also allow me the space to engage with others about future.
I think the thing is with the positivity police, as I like to call them, is it kind of shuts down my experience with everything that’s happening for me. It just doesn’t sit right with me to tell someone how they need to process the thing they are going through positively all the time. I’m allowed to experience the depression and grief and devastation of this cancer diagnosis. I’m allowed to be in the shit. I’m allowed to hold the negative. That’s my right. It doesn’t negate the hope I have. I still hold space for hope. It’s just a smaller space right now. Talk to me about hope once I hit July 2025 or Jan 2026 if I’m still having clean scans and I bet I’ll have a different outlook. But for now, let me hold this how I’m holding it. So much of what I have been through is still SO recent. So much of this experience is still new to me.
So let me be a sad sack. Let me have my moments. But also help me find a way to find joy by supporting me in my quest for hobbies or experiences! Visit me! Call me, text me, anything! Give me reasons to hope for some future by engaging with me.
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.
dusty
This week turned into a nightmare. My youngest cat (Dusty Bottoms) got diagnosed with a lifelong condition that requires surgeries and expensive food. I am heartbroken. Mostly because his care is outside of what I can afford on top of what I am already dealing with.
He has surgery Tuesday, which luckily, I have insurance for, but his special food costs about $300 a month, which I have no idea how to afford.
So I’m making a decision that no one should ever have to make…. I am making the decision to rehome him. I am understandably devastated, but I have to do what is best for him and I think what is best is finding him a home where he can be cared for that can accommodate his quirks and his disorder.
My heart is broken this week and I assume it will feel that way for all my days, but I don’t have anyone who can take him on. He’s the absolute sweetest little boy I know. He is so sweet and loving. I just hope that the family I find him is one that he can be so happy in.
Please share his pet profile, if you can, so we can find him a perfect home.
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.
November So Far
Last night I cried in a way I haven’t been able to since the prognosis. Heavy weighted sobs that made it impossible to speak.
This week has been unbelievably heavy. Everyone feels that heaviness. The way most people are mourning this election is similar to how I’ve been mourning my former life. The anticipatory grief of what is possible is intense and hard to grapple with. All I can say is to take it a day at a time and do your best to hold others with love and kindness. The road will not be easy, but we will do everything in our power to make it out alive.
This week for me feels heavy not only because of the results of this year’s election. I hit a point in my mourning that I don’t know how to navigate and I have my bimonthly scan.
The grief arose from talking to a friend about how hard it is to imagine a life where a romantic relationship could emerge. I have yearned for that relationship and the only person I ever truly loved rejected me in a way that I’m still piecing myself back together from. I rebounded after that relationship to an abusive one that drained me of the illusion that I was a worthy partner. It hurts to reflect on this, but it is part of the reason I’m scared of what could be. To open yourself back to rejection on top of trying to find love during terminal illness feels impossible.
So many of my loved ones try to encourage me to not give up, but it just seems so hard to put myself through another round of rejection. I have loved so much in my life, but the love that I wanted was never returned.
It’s hard not to dwell on what is missing from my life. This life of mine has been so unfair and unkind to me. From the time I was 5 years old, I’ve been trying to hold myself up and have hope. I’ve suffered from bullying and abuse in this life and I keep moving forward. I stay resilient. I keep my head up and move with intention. But right now, I’m at a standstill with myself.
People all around me remind me how loved I am and how supportive they are to me and how worthy I am. It just feels impossible to see a future where I am graced by the love I crave.
Today, I feel grief and sadness for the above. I also feel anxious for my scan tonight and the results that I’ll get next week, but it feels like small potatoes in comparison of all that I am processing. I’m so used to being in the MRI machine at this point that my anxiety isn’t even bad. The anxiety will act up again on Wednesday as that’s results day.
Wish me luck.
The Best Advice I Recieved
I’m laying in bed right now thinking back on the time I was most desperate for community during this journey. I ran to the brain cancer Reddit page and through tears managed to write “Struggling with wrapping my mind around my diagnosis and prognosis: Earlier last week I got diagnosed with a diffuse hemispheric glioma h3g34 mutation grade 4. I’m devastated. I’m 33. My prognosis is 18-22 months. I’ve seen some posts and studies where people have lived with my specific situation for 5+ years. I am feeling really low and struggling with how to process such a limited life span as well as the grief I feel for all the plans I had for my life. I feel so alone even though I have a good support system and good health care team. I just don’t know how to even begin processing everything. I’m trying to just feel my emotions as they hit me and trying to find moments of normalcy throughout each day, but it’s so hard. I’m so angry that this is happening. This is such a shitty reality and I’m very much in disbelief most days. Any advice on how to tackle such an unimaginable reality?”
And I received this reply from user pathomnemonic:
“I truly feel for the loss of your future plans and dreams. My wife also has a grade 4 brain cancer. It's a different type than yours but the prognosis is equally disheartening. We have learned that there is still a life after diagnosis. But, it's not the life we had before. It took a long time to learn to appreciate this new life. All meaning of our prior pursuits was lost. The new meaning had to come from long discussions, time, and coping with the situation.
I'm also a pathologist. I mention this for two reasons. First, I am very familiar with your diagnosis and the prognosis. But, remember, those timelines are based on the sum of all peoples with your diagnosis regardless of all their other comorbid diseases (heart disease, other cancers, COPD, diabetes, etc) and their age. You are young and this will heavily lean in your favor. Additionally, you are alive in 2024. Many of the people that helped provide an understanding of that prognosis lived in a world where treatments we have now did not exist. It will take work, but keep up on the treatment options and be aggressive. Your post history looks like you are in PDX. OHSU is a great hospital. But, I highly suggest getting a consult with UCSF. They define the criteria for these diagnoses and they have tons of clinical trials.
The second reason I mention my job is that my particular specialty is centered around performing autopsies. It's not much comfort but I have found some realization in knowing that everyday that I go to work, I see people who had plans for that day but instead are now dead and on my exam table. These people often are young and die suddenly from a hidden disease or an accident. I've seen countless young people, parents, children, and families killed in car accidents. That particular demise hangs over all our heads and can come any time we are on the road. Unlike brain cancer, none of those people got to see their loved ones after they received their injury. None of them had a chance to wake up to a new world with lost meaning and new meaning. Their friends and family will never say 'I love you' or 'I'm sorry'.
For all the ways we may meet our fate, my only silver lining in this horrible disease is that we get some time together.“
This reply gave me perspective that I’ve held onto throughout the past six months. I think it’s worth saying this reply is why I treasure my time with my people so much and why I try to live with intention now. Every opportunity I’m sharing with people, I try to maintain being intentional and to allow myself and the people I’m sharing a moment with my respect for their time and a safe space. It’s a great honor to be a part of the lives of my people. I cherish whatever time we have together always.
I don’t have any idea how to cite this quote, but if you are curious about the thread: https://www.reddit.com/r/braincancer/comments/1bseino/struggling_with_wrapping_my_mind_around_my/
An Ode to McKenzie
It is currently November 1st. Two weeks ago I had the worst appointment since this entire journey began. A new doctor and I met for the first time and he essentially treated me as a statistic instead of a person. He talked to me about my timeline and how long I’m expected to be alive. He had never met me before. Barely read my chart, I’m sure. It has been 10 months since they found my tumor and since the clock started ticking on my timeline. He said on average, people with my condition have FOURTEEN months. That truly freaked me out. So I did what I thought was the right thing and made an appointment with the doctor I see frequently and who knows me best. She said that that number was highly skewed and that adults in my age range are living longer. She said I’m stable at the moment. I could keep going for a while. 5% make it to 5 years. It might be low odds, but I have a lot of will so maybe I’ll make it that far. I’m not sure, but then again, who is?
She said some other things about my condition too. She said that brain cancer is different than others. It doesn’t spread outside of the central nervous system. She said they’ll be able to tell about 9 months prior to my passing. She said that brain cancer takes you gently and without pain. You get less hungry and sleepier until one day, you just don’t wake up.
In some ways, I found this comforting. In others I found it sad. I think so much of what I feel right now about this situation is overridden by what I feel lacks in my life. The career that I had planned on pursuing has been downgraded to a certification course to become a peer support specialist. You will likely see that as a positive (and it is), but for me, it feels like a consolation prize or a participation trophy. I’ll never have the opportunity to become a therapist, but I’m hoping in some way this can be the way I can help someone else. It’s sad for me to also know I’ll likely never have the romantic relationship I wanted. I don’t know if I’ll ever be able to put myself out there again because well who would want someone that is dying? And how do I even begin to accept love for the body that is actively killing me?
It’s so hard to access this part of my grief. I feel like I’m in bereavement for my former life. Nothing is the same now. I’m certainly not the same. I don’t know how to allow myself the space to really sit with these feelings for more than an hour at a time. It is baffling somewhat to me with how deep my emotions are. It feels like I’m losing myself, but not in the way that I’m becoming something new. It just feels deeply depressing to be interacting with what’s missing.
While I do have these hours I spend in my grief, I also have things I try to celebrate. I have a support system made of family, friends, and my care team. A system I feel grateful for every moment of my life. There is one person in my system that holds space for how I feel without any judgement or argument. She has been with me every step of the way. She is real sisterhood for me. She encourages me to go deep. She and I have known each other since 2008 and have grown up alongside each other in every way - through life’s best and worst moments. She is my chosen family, my sister, my mismatched sock. She is the reason I feel okay about everything. I hope I find her in every lifetime. We are mourning alongside each other. Her friendship is the reason I’m able to hold myself together most days.
We focus so much on finding *the one* in a romantic partner, but as much as I’ve longed to feel the love and adoration from a partner, I can’t help but feel that this platonic sisterhood is my *one.* So I honestly feel okay about giving up my hopes for romance. I have the most amazing & truest love I’ve ever known from someone who has been my confidant for decades. I feel incredibly lucky and blessed to get to experience this sisterhood. Having such a deep friendship gives my life meaning in ways I never even dreamed of.
She’s been the North Star of my life and my greatest support.
Love ya Kenz.
The Grief Experience
It wasn’t until a friend announced her pregnancy on social media that I started to conceptualize how deep my grief was. Watching people’s lives move on and big life milestones occurring really forced me to pull the blindfold off. It wasn’t that I hadn’t acknowledged the reality of death and loss. It was that I had been just looking at it in between all the other bullshit that I had to process and tend to for the first six months of this journey. it was like I saw it and knew it was there looming, but it was just in my peripheral vision, just out of reach.
The pregnancy announcement shook me. I never wanted children and still don’t, but knowing now that it will never be an option was heart wrenching for me. The impossibility of what once was possible grasped me by the throat. I saw green. I have never felt so jealous and angry in my life. It wasn’t just jealousy for my pregnant friend. It was jealousy of everyone around me who just get to move on with life and experience more firsts. It is watching people accomplish things and live when I don’t get to. It is heartbreaking to realize that you’re never going to accomplish your dreams and hit milestones that others are experiencing.
There’s the grief within me for all I will never have nor experience. I try to hold onto all the things I can have, but every day is different and the heaviness of what is possible varies. Sometimes I’m struck with visions of the future and what it looks like without me. My mom picking up the photo of us that I display on my shelf, my dad packing up my art, my siblings, my friends, everyone experiencing the loss of me. It’s heartbreaking to know I won’t be able to be with them in the physical realm. I don’t know what comes next, no one does.
I want to believe there is something, some way to stay here with the ones I love. Maybe I just stay alive through the memories they have of me, maybe my spirit lives on. I am not sure, but I keep hoping for something. Someway to move on and still stay at the same time. There isn’t enough time. There isn’t enough of anything that can make this okay.
I think the most difficult part of this is the way people look at me when they find out about my eventual passing. It is a mixture of pity, worry, and sadness. I often find myself trying to ease their worries when the look arises. I don’t know why I do this - probably to ease the hardness of the conversation. I struggle with this as much as one can imagine. The things I am losing, the things I’ll never have or experience, are things that I think about and mourn often. I try so hard to be strong and carry myself with the determination that I’ll beat some odds. I think when that face appears, I just try to offer some bright side to this situation to the receiver of the news I’m delivering - to ease the burden of knowing someone is dying or to make it sound less awful than it is.
I feel differently about everything each and every day. I like to joke about it mostly because I don’t know how else to deal with it. I do have my moments where I talk about it more heavily, but it is something I only do with close friends and family or doctors and therapists. It’s a conversation that I save for people who are closest to me and this process. Not everyone needs to know the specifics of my pain, but it is important to shed light on what is experienced in moments I have alone or in quiet conversations with loved ones. I think so many people don’t see grief as messy as it is. They hope for a process that goes through the stages in a clean way, but grief is not linear and it doesn’t always have a neat and tidy stage. Sometimes grief is felt with a multitude of emotions at once drowning you in what feels like endless grief. Everyone has their own way to work through it, but I don’t think the people in my position experience grief in the same way as the ones who stay alive after we pass on. I think we experience fear, anger, denial, and bargaining for sure, but acceptance… I’m not sure it is something anyone terminal can get to. Maybe when one is closer to the end it is possible, but I’m less than sure that acceptance will ever honor me with its presence. It feels impossible to be okay with dying knowing so much is going to go unexperienced.
Boundaries
Family around me kept trying to point me toward hope, a chance, but I was unwilling to hear it. I didn’t have the ability to conceptualize a future anymore. I knew everything I had been working towards, everything that had given me a sense of purpose, was gone. I couldn’t see past the fog of grief that laid out in front of me. It felt like there was nothing for me anymore.
A lot of what people don’t understand about the journey is what terminal actually means. People just sit in their own point of view where they still avoid looking the reality that everyone dies in the eye. They sit with feelings as if there is always a clean ending, like we are all given the opportunity and the privilege of growing old. The truth is that it is a privilege to have more years in front of you than behind you. To see the future - grandkids, generations, everything around us growing up and older - that’s a future so many won’t have. Time takes us when it wants us. Some go old, some young. Some tragically, some gently in their sleep.
People are so focused on maintaining their idea of permanence that they often take for granted the days they have. There is so little time and there are so many things to do in life. Someday may never come and people put off everything until the inevitable occurs and life has passed them by. It isn’t until someone is impacted by grief that they often stop to ponder the things we want from life. Until something like death and/or the prospect of it rocks us to our core. A central experience of being human is to experience death. It is one of the only certainties of life, and yet, when confronted with it, we avoid talking about the eventuality of it all.
The discomfort of talking about my terminal status plagues most people I speak to. They offer me pleasantries and platitudes. “You are so strong… you are gonna make it through this… it’s gonna be okay….” while life will return to the status quo for so many after sharing these conversations with people, I’m left feeling more alone than ever after being offered up these clean, affirming phrases that do nothing to help me. I’d rather be affirmed in how loved I am, how that this situation is actually the shittiest thing to go through. Being offered validation is the most helpful part for me. It makes me feel normal. It makes me feel seen, heard. It’s not as tidy as the phrases that you would typically offer to avoid the grittier parts of a conversation, but it is certainly more affirming.
People want to be helpful and offer up some sense of hope. I’ve had family try to send articles, books, etc to help me navigate my cancer diagnosis. I threw them all away. I decided early on the only acceptable source of information are the care team that I have hired to be honest with me about my diagnosis. I denied help from alternative sources because there are so many different types of cancer that there is no exact solve for them all. They vary heavily. I decided the course of action was the medical route and I have stuck with it because I still believe it is right for me.
I think most people get torn between what they want and what others want you to do, but the most helpful people in the process of me seeking out my treatment are the people that let YOU lead. At the end of the day, it is your body and your choice to make the decision best for you in your treatment. I had two options for treatment at the beginning of my journey. I could either go the suggested doctor route (and the route that had a lot of research behind it) or go the route of a clinical trial. I chose to go the results route, the one with the best research cases, as the results pointed toward the goals I had for treatment: quantity and quality of life. Choosing the goal of treatment for yourself is such an important step and having that be my guiding force helped make decisions about my care easier to make. I set boundaries about how much information that I wanted to know and the sources I would accept it from. I set the boundaries to protect myself and I didn’t just set those boundaries with myself. I set them with my doctors, my family, and my friends.
The importance of boundaries allows you to be in control, especially until you’re ready to hear more about your diagnosis, treatment options, etc. You, and only you, know what feels right for your journey and your health, so follow your instincts.
Diagnosis
I get the call at six weeks. It’s brain cancer. Diffuse Hemispheric Glioma H3G34 mutation Grade 4. I don’t even think to ask about a prognosis and I don’t. She doesn’t give it to me either. I’m just absorbing “cancer.”
The next day around noon I get a call from my dad saying he just spoke to the nurse and he found out my prognosis. He says it’s not good. 18-22 months.
I choke on my quesadilla that I had been gleefully stuffing in my mouth moments earlier. Everything around me descends into chaos. My grandma is on the phone with my sibling when I start scream/wailing. I couldn’t believe it. I could not believe I had to hear that. To absorb it. To even fathom it.
My sibling came running in and I had to tell them. Verbalizing that prognosis was gutting. I called my best friend, my mom and I sobbed for hours. Then the next day or so I worked diligently down the list of my inner circle of family and friends to tell them.
My life was just a daze of appointments. Doctors, therapists, social workers - all consulting me on the scariest thing of my life. With every appointment attended, the family with me looked for any signs of hope. Reasons to hold out for a cure. Anything. Sometimes I think the answers of hope from the questioning was just from being worn down by all that glimmer in their eyes: the one that was searching for answers.
My state of mind throughout everything that happened had been so loosey-goosey go-with-the-flow and accept everything and just take each hurdle as it came by this point. I didn’t even think about anything except how to carry it and next steps up until this point. There wasn’t enough time to fully feel yet.
Yes, there was some fear behind surgery, but that was behind me now. I had a new set of challenges in front of me. Unimaginable challenges for someone who was just starting their life. The emotions stewed for a bit before I could verbalize them. Everything was fact for me. I didn’t have hope - I had facts, statistics, reality.
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.
Contact
bealskailey@gmail.com