what is the prognosis now?
Hello to my community!
Well it has been quite the past month since I last posted. It hasn’t been exactly great, but it hasn’t been horrible either.
Last week, I had to confront a loved one that spread some misunderstood information to people and so I set some good boundaries.
The information that was spread was that I definitely will be here in five years. Unfortunately, that’s not the case. The nuance of timelines is that you can’t predict things. My tumor was only classified as its own thing in 2021, so research on timelines is sorely lacking, but we do know 5% of people with my tumor type live five years. Whether I’ll be one of them is unknown. We can hope for that, but right now it’s really just wait and see.
I had an appointment today where we talked about next steps since I’m not on chemo anymore. The next steps are to work on strengthening my body with recovery, travel, relaxation, school, speech therapy, and immunotherapy. I will continue to have my scans on even number months to monitor growth and have monthly appointments to go over symptoms and monitor for concerns.
I asked something of my doctors that I’ll ask of you now… since timelines are nuanced and unpredictable, I have decided I want to remove those from the conversation, at least until there is decline or an updated step to take to intervene. Why? Because I feel like a timeline is an expectation and expectations are pressurized. It makes me feel like I’m in a box. I don’t want to be boxed in.
I’m hopeful that this exercise in not focusing on timelines will allow me to live more freely. I’m hoping it will give me opportunity and perspective.
I hope this makes sense and that you will embrace this boundary with me.
Thank you,
KB
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.
me, myself, & i
I’m listening to a playlist that I’ve named “retire” that makes me think of all the notions I’ve held throughout this process and how they shift in every moment and how much I feel. Ask how I am at any given moment and I could give you many different answers. The simplest answer is that I feel everything all the time and it’s exhausting trying to hold it in a way that isn’t messy and difficult for others to understand. I’m up and down and everywhere all the time. I’m anticipating and experiencing and mourning. I exist in the past, present, and future. I’m really trying to look forward to future times and make plans.
The past few weeks have been spent primarily in Southern California. Bouncing around between the counties I’ve known my whole life, seeing friends, family, and friends that feel like family. In Los Angeles, I got the opportunity to go to a very small acoustic show for Lucy Dacus and her new album. This show meant so much to me as experiencing her in a venue that felt right to house her incredible vocals was otherworldly.
I’m really missing my kitties, missing my bed, & the other portions of my heart that are spread throughout Oregon.
This trip was something I needed, but sometimes, it feels like you can easily overstay your welcome in California. It never feels meant for me…even if the people I have in this state are lovely beyond measure and I care deeply for them. It feels just like a place suspended in time for me, a place where people are stagnant and things can’t grow the way they’re meant to. Of course, that’s the reason I left & the reason I don’t love revisiting certain parts of the state (I.e. Orange County). It just feels like a place I’ll never fit in nor would I want to.
I had a weird experience at my hometown Trader Joe’s where people reacted to my shaved head. They looked at me like I was a zoo animal or perhaps like I had three heads. It was primarily white cis men that I noticed staring. They expect me to perform for them femininity, but I cannot imagine doing so in this stage of my life. I never bring my wig to California and I only wear it on certain occasions anywhere else. I am getting more used to just rocking the G.I. Jane cut and I almost prefer it in most cases. Yes, sometimes the looks I receive are derogatory feeling, but for the most part, I feel more like myself.
I’m thinking about how much more I feel of myself lately. My body has changed in a way that I don’t really know how to recognize, but internally, the person I am is the person I’ve been yearning to be my whole life. I think the external recognition of self is something that is constantly evolving for me, as I learn to recognize my physical form, to dress myself in this body, to see myself in the mirror. But I have the internal, and that for now is enough.
an open letter to the woman that broke my heart
Hi,
I’m not sure if i’ll ever be able to reach you, but often I wish we could talk. We made our decisions and it sucks that things ended so poorly and abruptly. I felt so much betrayal when things went south between us. I really hate the way our relationship ended - how messy and cluttered it felt. I hate that the person I rebounded with destroyed every photo and piece of memorabilia I had of us. I hate that I will forever miss you and the way you made me feel. Of course, it wasn’t the love I had hoped for in the end, but it was a big love. A love that felt like destiny, a love to rattle the solar system, a love I had hoped to share with you for lifetimes.
I am writing you today because every day without you feels strange. I can’t seem to really move on from how big I loved you. All that happened, everything, I wish I could go back. All I ever wanted was you. I was deeply in love with you and I know you knew. I know it was uncomfortable to accept that love and when I tried to open up about it, it fell on deaf ears. I was no longer someone you wanted to talk to. I was no longer a priority In your life.
I imagine a time and space where the reaction was different, where maybe you wanted me too. Maybe in that timeline, we are together and happy and in love. I wish I could be there now - spending my remaining days holding you close.
The truth? I don’t know how or if I could love someone else the way I loved you. I loved you in a way that felt like life or death. Now that I’m literally dying, I don’t know how to hold the empty space you previously inhabited in my heart.
If I’m being really honest, as much as I have wanted to find someone new, my heart has never fully opened to the possibility since the day you left my life. I remember how desperate I was for you to stay the last time I saw you, how desperate I was to hold you. You were so quick to leave and it hurt. Another abandonment that I didn’t know how to swallow. All I wanted was for you to stay.
I’m different now. More fragile, more cautious, more shielded - hardened even. But I am also stronger. I’m not afraid of being vulnerable anymore. I’m not afraid to admit that, even though every single person in my life would be against it, I still miss you and want you all the time. I still want to talk to you, share with you my life, my experiences, my laughter. Life feels so empty without you sometimes.
I came here - to Portland - for you and I know you know that. Living here and not having you in my life anymore feels so weird and broken. Not having you here during this time of my life feels cruel and wrong. I’m not chasing you down. I’m not looking for you. But sometimes, I wish I had you here with me. I am not even trying to reach you, but I wish I could.
I wish I could’ve savored the last embrace I had with you. I wish I could do our last night over again so that it wouldn’t have blown up and pulled us apart. It feels like we have the whole Pacific Ocean in between us, but you live 4 miles from me.
I am always going to wish that in some other timeline, I get to grow old with you. I am always going to wish that you are with me in some capacity. I miss the space where you lived in my heart, my life. I wish I could call you and tell you any of this, but it is all too far gone now.
So I guess this is the goodbye I wish I could have had back then. One that conveys how much I love you. Your absence is felt in my life every day. I hope the next timeline is ours.
how we stay alive
From 2017 until my diagnosis, I used to rely on the more “woo woo” parts of spirituality – tarot and astrology – to help assist me in future planning. It helped me gain a sense of intuition surrounding the many unknowns of life and how I would be able to work on not letting the overwhelm of those moments overtake me.
Lately, I’ve been considering what heading back to utilizing those resources looks like for me in this era of life. I don’t know if it would help me by any means with my journey through grief, but what if?
I have gotten as far with acceptance that I can with the knowledge I have now. I am in acknowledgement that I will die. I acknowledge that it will happen for me before most of my loved ones. I acknowledge that this is my reality.
I don’t accept these things though, but acknowledgement feels like a form of acceptance – a way to allow forward momentum in my life.
I just think it may be impossible for anyone to fully acknowledge that one day, we will cease to exist. I feel so weird picturing life being lived without my presence. I should be there. I shouldn’t have to die earlier than normal.
Someday my stories won’t be told anymore. They say you die twice. Once when your physical body goes and last when your memory disappears from the minds of others.
I recently watched We Live In Time and the last scene reminded me of that saying. It’s the little things that are passed down generation to generation that keep us alive in the minds and hearts of others after we pass.
As always, I feel really deep in the weeds of grief and the unknown. As always, I’m wishing that there was a way to stay and go at the same time.
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.
Anniversary
Hi all,
Today is the exact one year anniversary of when my tumor was found. This is the day the clock started ticking on how much time I have left.
I’m not gonna lie, I’m really worried for my scan on Saturday and the results I will get on Tuesday. Things feel weird and different in a way I don’t know how to explain. I’ve let my doctors know what’s feeling different and we are impatiently waiting for the results.
This year has given me a lot of understanding into the world and what it means to be sick. Just because I look healthy doesn’t mean I am. I’m remembering what it was like to be essentially paralyzed on my right side and the part of this journey that made me understand how privileged I was to have an able body. I’m remembering what it means to be alive before this started. I’m experiencing and remembering the after too.
I’m a disabled queer woman and everything happening in the world reminds me that I’m on the cutting block. I’ve been and I still am privileged in many ways, but people like me, are seen as drains on society. People like me require “hand outs.” Social security disability, food stamps, the affordable care act are all things I benefit from and need to continue with my survival and those things are quickly going away right before our eyes. My heart is broken.
Someone in my life defended people who didn’t vote and called both parties the same and I don’t see it that way. There’s a lot of privilege in that viewpoint and it leads to the same black and white thinking that most conservatives have about issues. People like this want a perfect candidate to tick every box, but the goal is that it should be whoever will do the least amount of harm. It disgusts me that people voted for anyone other than Kamala when there was so much at stake.
This is all the trolley problem in my eyes. I’m so angry and hurt by anyone who has chosen the path of voting for trump/chose to vote third party or decided to not vote. Whether you like it or not, someday, you will have to wake up in a world where you’re disabled and no longer able to care for yourself. You were likely hoping to rely on your social security and Medicare, but hey, it is actively being flushed away before our eyes and whose fault is that?
Anyway, I don’t care if this comes across as shaming to anyone who chose differently than I did. Those decisions are actively harming others and if you claim to care for someone while actively making a decision that will directly harm them, that’s nasty behavior and I won’t tolerate it in my life.
This isn’t a difference in opinion. This is straight up a difference in morality. I don’t care anymore to play nice. Life is too short to take in the stress of tolerating others and their opinions that are harming not only to me but everyone that I love in minority groups.
You may think that you are reading the ramblings of a radicalized leftist - or whatever - but honest to god, it isn’t radical to want decency, respect, compassion, understanding, and kindness from others. That’s not a radical ask. It’s the bare minimum that we should be doing for each other. It is what we owe to each other.
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.