I have something called grade IV glioblastoma.  This is a kind of brain cancer that is very aggressive.  Not much is known about how to treat it effectively.  The median life span for people with this disease is 18 months.  (It turns out that my life span has exceeded expectations.  I am now alive more than four years past my original diagnosis in 2016.) I am incredibly lucky to have survived beyond my original prognosis. 

When I first found out what I had, I was very focused on and worried about the emotional side of what lay ahead of me.  How could I bear what was to come?  Would the rest of my short life consist of mainly sadness, fear, and loss?  Because I was so worried about the emotional dimension of this illness, I paid quite a lot of attention to it and actively engaged in trying to construct a path to navigate the feelings ahead.  I want to share some of what happened in this process in the first hours, days, and weeks, and even months, of learning my prognosis.

I am not sharing my story because I think I have some answer or path that helped me work through how painful this situation is.  I don’t have an answer.  But I do hope there is something in my story that some people might find relevant or helpful to their own situations or at some point in the future.  People will come to my story from their own different starting points.  

First Hours

My husband and I were in the neuro-oncologist’s office.  I had come home from the hospital a few days previously, after surgery to remove the brain tumor that had been found when pain in my head took me to the emergency room.  We were there to find out what the biopsy had said.  I had followed the advice of someone on the neurology team and had refrained from googling anything about brain tumors ahead of time.  My husband had not followed this advice and tried to gently prepare me.  “I think it might be something pretty bad,” he told me carefully.

I’m pretty good at denial, so I decided to just wait and see.  

Of course, because I had refrained from looking up brain tumors, I had no idea what a grade IV glioblastoma was.  I had to ask the neuro-oncologist questions for a while to understand that I had a kind of cancer, one that people did not know how to treat effectively, and that usually involved an extremely short life span.

Our next stop was Stow Lake in Golden Gate Park.  (My husband had planned ahead a little to ensure the right setting for a post-diagnosis outing.)  It was a beautiful day in an idyllic location.  We spoke as if we understood the information we had just received.  We shared our appreciation for each other and the years we had had together.  But I knew it still hadn’t sunk in.

We went home and started learning about the disease.  Reading through the brochures and websites, I quickly became petrified.  It seemed to me that the tumor could come back at any moment.  I had a headache right now.  Was that the tumor coming back?  

I quickly stopped my research.  It was too terrifying.  That was my first experience with doing online research about my disease.  Since then, I have learned to verbally ask experts the questions I have, rather than reading online or hard-copy materials intended for a broad audience.  Many of the things I read in that first day turned out to not apply to my situation, and planted fears of scenarios that were not relevant to me.

First Days

A family friend had recommended a book called AfterShock: What to Do When the Doctor Gives You—or Someone You Love—a Devastating Diagnosis.  I started reading it on my Kindle.  The first chapter describes people’s experiences in the first days after getting a diagnosis.  In those first days, I returned again and again to stories of how other people experienced these moments.  The book emphasized that the hardest period was the first 48 hours after getting a diagnosis.  I found this information very helpful.  I concentrated on getting through those two days.  And I held on to the hope that I would feel better at the end of them.

At the end of those two days, I did feel something lifting and a bit of relief.

In Search of a Theory for My Emotional Journey

I was beginning to climb out of the hole that I was in and to think—just barely—about the future and next steps.  My foremost fear, the one that made it hard to think about moving forward, was what lay ahead on my emotional journey.  

I particularly worried about living in a state that I started thinking of as the “Primal No,” where I would be continually filled with horror at my situation and would refuse to accept it, constantly yelling “NOOOOOOOOOO!” out to the universe.  (I further explore my worries about the “Primal No” in “The Coach and Me: Learning How to Live with a Terrifying Disease.”) 

I really didn’t want to spend the time remaining to me feeling the way that I was worried I would be feeling.  Were there other examples and models of how to channel emotions in a situation like this?  I felt I needed to know.  I started doing online research (research on emotional journeys).  I was surprised by how little I could find on navigating the emotional terrain of this kind of illness. 

According to what I was seeing on the internet, no one had done work in this area since Elisabeth Kübler-Ross’s work on the five stages that dying people go through.  I couldn’t even find anything on how someone might more skillfully navigate those stages.  (Would it be possible to leapfrog to Kübler-Ross’s last stage, Acceptance?)

The more frustrated I got with my internet search, the clearer and more specific I got on what I was searching for.  I needed to have some kind of conceptual model for how my emotions could work in a situation like this.  This would be a model that I could understand, that made sense to me.  I also needed to find a theory that was plausible to me, that I could believe, for how I could feel OK.

Thank You, Kate Granger

I was having yet more ideas on what I hoped this theory would say.  It would say that I would have lots of emotions, but they would flow right on through me.  The idea behind flowing emotions is that they wouldn’t get stuck in a “Primal No.”  I needed to believe that it was possible for me to let feelings flow through me and not hold on to bad stuff and obsess about it. 

In my past, I hadn’t been particularly “flow-y” with emotions as far as I could tell.  Could it be possible for me with these much bigger, harder emotions in my future?

Since I couldn’t find any information about this in the form of research or expert advice, I decided to turn to personal narratives of people who had illnesses of a similar severity.  

The first several accounts I came across were not helpful.  What some people found helpful were religious beliefs that I did not connect with.  Or I just didn’t relate to the person whose account it was.

Then I found Kate Granger’s journals.  Kate Granger was a young English doctor who found out that she had terminal cancer when she was 29.  She lived another five years, dying in 2016.  She wrote two journals about her experience, The Other Side and The Bright Side, and continued her writing through a blog.  

Kate wrote about her emotional journey, and guess what?  She handled her emotions in a very flow-y way!  She had emotions—lots of them—she didn’t hold back from them, and they seemed to pass right through her.  She described the types of things that I worried would make me sad.  And they did make her sad.  And then she’s on to the next thing.  

She was passionate about her work and continued to have zest for it.  Even though she believed she had a very short time left, she was fully engaged in living.

Kate Granger was very in touch with her dying.  Because a real person in this situation handled her emotions in the way I hoped was possible, I started to believe it could be possible for me.

Thank you, Kate Granger, for being so flow-y and for sharing your experience so fully.

Taking Action—Meditation

Kate Granger had given me hope, but I was still extremely worried.  Just because Kate could do this, didn’t mean that I could.  Slowly, I recovered enough from the shocking news of my disease to contemplate getting out of bed (where I had been for a number of days) and make some plans.  My first priority was to do some things that could help me prepare for the emotions to come.  I immediately thought about meditation.

A year earlier, I had taken an 8-week course on mindfulness-based stress reduction, a structured, accessible introduction to meditation.  I had tried meditation in the past, but it never took; this time, it did.  I loved the ideas and intentions behind it, and for the first time was finding that I could do it.  I started meditating every day.

Now, I was really glad that I was already a meditator.  One of the core ideas underlying the form of meditation I was doing (drawing on Buddhist approaches) is to be at peace with reality, whatever that reality may be.  That’s what I wanted.  I wanted to be at peace with having a shortened life span.  I wanted to be at peace with the physical developments that would come with the progression of the disease.  I wanted to be at peace when I was dying.  I wanted to be able to accept whatever happened and not spend my emotional energy fighting it and fearing it.

If I could feel that way, that would be . . . well, probably not possible.  But certainly nice to imagine.

It felt to me that what I was aspiring to was years away from what could happen for me (and I didn’t have years).  I was a beginning meditator, who had been practicing on my own after an 8-week course.  I didn’t know if it was possible for me to cultivate much peace with the reality of my situation.  But I knew I had to start working on it.  As soon as possible.

I decided to look for a meditation teacher who I could work with regularly, and I was lucky to find a wonderful one, Nichole Proffitt.  We started meeting on a weekly basis.

One of my first questions for Nichole was how much time I should spend meditating every day.  The meditation literature I had come across was filled with information on how many hours experienced meditators put in and what that enables, and the number of years it takes to reach certain stages.  I guessed that I should probably start logging significant hours if I were to have any hope of cultivating peace with what lay ahead.

Nichole refrained from recommending a specific amount of time to meditate.  She noted that being really focused on getting a certain outcome from meditation (e.g., being at peace with reality), was counter to being at peace with reality.  Rather, I was striving for a different reality.  I was looking for a recipe or a map, that if I followed it meticulously enough, would take me to a certain emotional place.  Nichole was proposing more of an off-road kind of journey, where I looked to my own experience rather than following a set of rules.  Rules would be an idea of what reality should be like, rather than what it was actually like.

Looking back, I feel that Nichole was trying to help me with two things in that early conversation.  First, she was helping me to tune in to my actual experience, a precursor to accepting or being at peace with it.  She helped me do this in a lot of little ways over time.  Second, she was trying to help me learn to trust myself, to feel that I have the capacity to be with (and ultimately be at peace with) extremely challenging emotions and situations.  That felt like quite a leap.  It’s a work in progress, but I definitely trust my capacity to do this more than I did.

A Brief Description of Meditation 

Some readers may not have meditated before and may be curious about what it’s like.  Here’s a bit about what it’s like for me.  Meditation is largely about paying attention to some aspect of your experience.  In breathing meditation, I might pay attention to my breath, noticing my inhales and exhales and where I feel them in my body.  But I don't just have to pay attention to my breath.  I could choose to pay attention to other sensory experiences like sounds, or physical sensations like an itch or an ache.

It is very common for the mind to wander when meditating.  When that happens, I notice it and try to return my attention to what I was paying attention to without getting frustrated with myself.  There is nothing wrong with the mind wandering, and noticing when it wanders can help people become better meditators.  As meditation puts me more fully in touch with my breath, my senses, and other aspects of my experience, it creates a space to be at peace with it: “This is what my breath is doing right now.”  “My left thumb has a dull ache right now.”  I am simply paying attention to the experiences that are happening in an accepting manner.  

I don't feel that I have done a terrific job of explaining meditation, and I am still very much an early beginner.  Of course, there are many books on meditation, and one I would recommend is the one that accompanied the course I took on mindfulness-based stress reduction: Full Catastrophe Living by Jon Kabat-Zinn. 

Taking Action—Therapy

I’m guessing that a lot of people faced with this kind of illness would seek out therapy.  It was definitely a natural thing for me to think about because I’m very comfortable with therapy.  I was a practicing therapist myself for a number of years and have sought help from therapy several times in my life.  I’m an informed consumer of therapy; as a former therapist, I am familiar with many different therapeutic approaches and the various purposes they might serve.  

When I first learned of my diagnosis, there was one particular problem on my mind that I really wanted to see a therapist about—squeamishness and anxiety about blood and needles.

After the surgery that removed the brain tumor, I had an anxiety episode that lasted for around five days.  I was continuously anxious and uncomfortable.  I was too anxious to pay attention to a conversation with another person, or read, or watch TV, sleep, or really tolerate being.  It was very difficult to bear.

There were two main contributors to this episode.  First, in order to shrink the tumor prior to surgery, I took a steroid called Decadron for about ten days before the operation.  It turns out that steroids can trigger anxiety episodes in some people, and I am one of those people.  The second factor was my squeamishness and anxiety about blood and needles (I write about this in “Squeamishness Story”).  While the steroids may have made the anxiety episode possible, it felt like my preexisting feelings about blood and needles in the surgery process were what set it off.

I guessed that my future would have a lot of blood, needles, medical procedures, etc., and I was way more sensitive to those things than I wanted to be if I was going to be dealing with those experiences regularly.

I knew of a form of therapy called Eye Movement Desensitization and Reprocessing (EMDR).  It uses bilateral sensory inputs to help your brain change the associations it has for certain stimuli or triggers.  If a certain situation has usually been very upsetting for someone because of what they associate it with, EMDR can help change those associations so that situation is not upsetting anymore.  

I knew someone who had a very successful experience with EMDR, and I desperately wanted to become desensitized to medical procedures. When I had recovered enough from learning of my diagnosis to begin to contemplate getting out of bed, the first thing I did was ask was my husband to contact our friend and find out how to get in touch with this EMDR therapist.  He did, and that is how I began to work with Cori Bussolari.

Looking Back: The First Hours and the First Several Months 

Those first several months after learning of my cancer were colored with anxiety. I remember people mentioning to me many months later how much more comfortable I seemed with my basic situation, compared to how I was when I had first learned of my disease. I needed a lot of time to digest.  (Fortunately, I had that much time to live.) 

Moving beyond Isolation 

When I first got my diagnosis, I did not want to talk to anybody.  My phone was turned off for weeks.  I was worried that talking to people about my situation would involve sharing my feelings and that the people I was talking with would be scared; I did not want to scare them.  I was avoiding them because I felt protective of them.  I tried to picture myself trying to tell someone what I had, and I knew that I just wasn't ready. 

Over time, I became much more comfortable with my situation and was ready to talk about it with others.  Then I was ready to start seeing my friends again. 

And so my emotional journey continues into parts unknown.