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.