Tag Archives: Brain cancer

A Year Ago Today

A year ago today was the worst day of my life.
A year ago today was a sad, rainy February Saturday.  I spent most of its hours in a hospital.

I arrived around 2 AM to the ICU to take my shift staying with my mom, relieving my brother.  I don’t remember a lot about those first few hours, except for that I could not for the life of me find a comfortable sleeping position in an upright hospital arm chair.  Around 4:00 or 5:00, I stepped out of the unit to…do something (who knows what it was).  As I returned, a few nurses were pushing a hospital bed out the doors.

“Where are they taking my jacket?” I wondered.  It didn’t immediately occur to me that not only my jacket, but also my mother, was on that bed.  After 2 1/2 days in intensive care, we were moving upstairs to the PCU.

The PCU was like a dream come true.  The spacious room had an actual door instead of sliding glass.  I was relieved to see a cot in the room, and pleased when our new nurse offered me not only a blanket, but a snack.

I closed my eyes, but the heart monitor beeped loudly every time I was about to fall asleep. My mom slept some, but woke up frequently, asking questions that I didn’t have answers to and attempting to rearrange the myriad of medical devices she was hooked up to.  She was recovering from brain surgery and her mind had a lot to work out yet.

My dad arrived to the room around 6:30.  I stayed with them for a while before deciding to head home for some real rest. The next several hours are very blurry in my memory.  I think I may have eaten what was leftover of my breakfast burrito.  I think I may have watched TV while I ate it.  I may have stopped by my sister’s house.  I may have called a friend or two.

But I know that sometime during the early afternoon I ended up back at the hospital.  My dad and my sister was hanging up “get well, Grammy” drawings and messages of “complete healing”.  Shortly after I arrived, the neurosurgeon invited the three of us down the hall to look at the monitors that displayed the MRI images of the tumor on my moms brain- the tumor he had attempted to remove three days prior, but was only able to cut out a small piece for biopsy.

He showed us images from different angles, pointed out swelling, and explained that the tumor had “fingers” that made it impossible to surgically remove without causing life-ending or life-ruining damage.  The lab results had not come back yet, and he reiterated that it was impossible to know the diagnosis or prognosis.

Lo and behold, before we left the room, he noticed a tab on his desktop which he had previously been oblivious to.  He clicked it, quickly skimmed through it, and told us that some preliminary lab results suggested that the tumor was caused by a bacterial infection.  If that was the case, good news!  Antibiotics are miraculous, after all.  We felt encouraged and hopeful for a moment.

But then another tab appeared.  The final lab results had just come in.  He clicked it, quickly skimmed through it, and just said, “oh”.  He avoided eye contact with any of us as he moved across the room to grab the print out of what he had been reading.  I saw the paper.  It had a lot of words on it that I didn’t know.  But I recognized one thing- and it was the only thing that really mattered: “Grade 4”.

He explained that it was a glioblastoma, which I would later learn is both the most common as well as the most aggressive form of brain cancer.  He didn’t attempt to give a prognosis.  “There are, of course, textbook statistical averages, but every case is different.”

Well of course every case is different, but this was my mom!  My mom who had cancer!  In her brain!  What was I going to have to prepare myself for?

“So what is the textbook statistical average?”  I asked him.  My family members looked at me as if they were both relived and afraid that I had asked.

The doctor didn’t miss a beat, “A year and a half.”

A year and a half.  For my mother- the woman who had been planning on riding her bike through Spain a few months later.  Who was going to Australia at the end of the year.  Who  did yoga and had a personal trainer.  Who volunteered at, ironically, the hospital, every week.  Who decorated cakes and carved clay figurines and made baby quilts and threw all of the family parties.

We walked solemnly back to her room, and the doctor gave her the news so cryptically that my dad had to clarify the seriousness of the prognosis.  “A year and half”, however, wasn’t mentioned.

I remember crying on my knees at the foot of her bed, but other than that I don’t remember much about that afternoon.  My brother showed up that evening, my dad gave him the news, more crying.  My father and sister then left the hospital, and I went down to the cafeteria to eat while my brother stayed with my mom.

I ate a thai curry dish that had been sitting waiting to be eaten most of the day while I returned a call to a friend.  He had just found out that his wife was pregnant.  When I returned to the room, all of the lights were off, my mom was asleep, and my brother was sitting next to her bed, in the dark, watching her.

“This poor boy,” I thought, “this poor boy has been sitting here for the past hour, in the dark, thinking about his mom dying.”

He offered to spend the night, and I went home.  I immediately turned in for the night, but then I heard my dad turn the TV on.  I don’t know why, but I felt like I needed to get out of bed and watch TV with my dad.  We watched one episode of Modern Family.  It felt strange, but good, to be able to laugh.

After the show, I went back to bed, bawled like a baby, and fell asleep, ending the worst day of my life.

*******

My mom came home a few weeks later.  She spent most of her time in a hospital bed in our  living room and was visited twice a week by a nurse.  She began chemotherapy and radiation and a month later.  She required physical therapy, as she had lost her ability to move the left side of her body after the surgery.  She took a lot of pills.  She suffered from horrible anxiety episodes.

But things have gotten easier since then.  Every day she pushes her wheelchair as far as she can down the street, and when she can’t go anymore, she pushes it and my dad pushes her home.  I think she’s up to half a mile now.  The hospital bed is long gone, as is the visiting nurse.  The anxiety has also subsided (praise God).

She just finished her 10th round of chemotherapy, and wears an electromagnetic treatment device on her head 24/7.  The tumor spent several months shrinking, and is now what the doctors call “stable”.

I wish I could report that a miracle healing has occurred.

Instead, I am here to report that a miracle life has occurred.   Do you want to know what the good thing is about having the worst day of your life?  It means every other day is better.

I wish that I could go back to myself a year ago while I was crying at the foot of her bed that day and show me what the next year would bring.  I would show us reading in the front room of our vacation beach house.  I would show Thanksgiving dinner.  I would show Christmas eve.  I would show playing games and laughing until we cry.  I would show raising over $2,000 for brain cancer research.  I would show my mom in her craft room, making the shirts we wore when we raised that $2,000.  I would show her out to lunch with her girlfriends.  I would show the doctor’s huge smile as he explained the good news of how well the tumor was responding.  It is amazing how many wonderful things can happen, even in the midst of the worst experiences of our lives.

I am apprehensive to express gratitude, because I don’t want to give anyone the impression that this reality has not been emotionally excruciating.  It has been.  But I am thankful.  I am not thankful for the disease or for the trial or for the sense of loss.  I am thankful that God has used this experience to open my eyes to the beauty and generosity of life and the bounty of His love.

 By the way, when you have a brain tumor like mine, you easily qualify for social security disability. One question they asked me was “do you have a condition that is expected to result in death?” I wanted to answer, “well duh, everyone does. It’s called life.”- My mom

 

 

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Cancer, Cats, and the Grief I Didn’t Know Existed

This has been a slow blogging year for me.  I normally blog about whatever gripping issue I can’t get off my mind, but this year, I haven’t really been able to talk about what has been on my mind.

In February, my mom was diagnosed with glioblastoma, which is stage 4 brain cancer.  I’ve had so much to say about it.  I’ve wanted to write so many things.  I’m not sure if not talking about it here has been the right thing to do.  Either way, it’s been hard to not synthesize my thoughts and send them out into the world.

I normally talk about general issues that kind of and sort of apply to potentially everyone.  Am I vague enough?  My point- I don’t feel like anyone is very invested in anything I have to say .  This topic is very different.  I don’t want to upset people.  Especially not my family.  It’s not that I might say anything cruel or untrue, but, to be supremely euphemistic, it is a sensitive topic.

There is so much I could say.  So mush I will say eventually.

*******

Stake conference rolled around several weeks after my mom was diagnosed, and it was a struggle to get there.  I remember laying in bed and thinking to myself, “nothing they are going to talk about has anything to do with me.”  I was wrong.  A young woman whose cancer was in remission had been asked to speak.  Now the fact that she had cancer, while coincidental, is not the point of this story. The point is that she said words similar to these, describing how she reacted to her diagnosis: “I had just been going about my young single adult life, having fun, when I was hit with this.  I had had no idea that the sadness I subsequently experienced even existed in the world.”

That is it.  I had no idea that this kind of sadness even existed.  That is really what this post is about- sadness.

This has been a weepy week for me in particular.  I’m not sure why, nor do I care.  I don’t owe anyone an explanation and neither do my emotions.  It’s so funny though, the times it hits you.  In the bathroom at a dinner party, in your chemistry lab, getting out of the shower, listening to a friend talk about their new car.  It sometimes stays for hours, or minutes, or sometimes it’s just a twinge, hardly even present enough to be noticed.

It wanders around my life like a spoiled and independent house cat.  It can’t be summoned- strangely enough, I have tried.  There have been moments when I didn’t feel like I felt sad enough, especially when having to listen to the lamenting of others.  It also is not easily shooed away.  It just lifts its head, stares you in the face for a few moments, and then settles back into it place.

It also usually hides when company comes over.  Most people wouldn’t even know that you had a cat.

Lately my life has been really great.  I have a job that I enjoy and where I feel appreciated.  I am maintaining my 4.0 and actually am having fun in my labs.  I’ve been camping 6 times in the last five months.  I’ve decided to train for a half marathon and that is coming along slowly, but surely.  I love my ward and feel more comfortable at church than I have in years.  I have a number of true, close friends who I feel like I can be completely genuine and even vulnerable with.  So things are going great, and I think that that’s how it probably looks to others.  What in the world do I have to be sad about?

And I even allowed to be sad?  Sometimes I feel like I’m not.

Tonight after my institute class I did my regular socializing and mingling.  I was happy to be there, but as I found myself staring into people’s eyes as they spoke to me about their surgery, or their boyfriend, or their classes, or whatever, and thinking, “I wish you knew how I felt right now.  I wish you knew that I am on the verge of weeping.”  It’s like half of my brain is there with them, laughing, flirting, talking about nothing, and the other half only experiences hurt. I want people to know, but I’m not going to tell people, because then what?  What can be said?  Nothing.

Now, I do appreciate people’s kind and supportive words.  I feel their love and love them for it.

But love and grief can coexist.

And so can joy and grief.  Maybe not in anyone else, but they can, and do, in me. I will never let sadness feel welcome in my heart, but, while it is here, I am willing to acknowledge its contribution.  It is the greatest educator I have ever had.  It is the most refining fire I have ever endured.  It is the most fruitful field I have ever been forced to reap.

Grief has made me calmer, kinder, and more gentle.  It has made me more grateful and less expectant.  It has opened my eyes to the good of this world, and has shown me how pathetic a negative outlook is. I feel like this is where  I am supposed to say that I am grateful for my trials- that they make me stronger.  I’m not grateful- as a matter of fact, this trial can go die in a fire.  I will never thank my circumstance, because it is horrible.

But I will be thankful for the fruits of my trial.  I am contained to be so, I feel like I have no choice in the matter.  My thanks is to God.

Life is beautiful, and also sometimes horrible.  One single moment can be both grand and devastating. We do need to know the bitter to know the sweet, but the bitter will never be sweet to us.

*******************************

Just as a P.S., we keep a blog for my mom called Marcia the Outlier, which we share to keep people informed on her condition, and also as a form of outreach to other GBM patients and their families.

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