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.