Tag: glioblastoma

The past week was a busy one. Levi had his last band concert on Monday evening I’m grateful to my friend Jen who always lets me sit next to her at band concerts. Ugh those things are hard for me to go to solo. Levi also played singles in sectionals this week. He lost in the second round on Wednesday. He’s been having some trouble with a pulled ab muscle so he’s going to heal that up and then he’ll be right back to training for next year. His Dad would be so proud of all the improvements he’s made to his game since last year at this time. Seth and Anna were busy working. I’m so proud of them and happy that they have jobs that they love, but the house just keeps getting quieter and quieter.

Last night my sister Elizabeth and her family came over. Hanging out with them is always relaxing. We had our first “real” fire of the year…wood burning vs gas burning…and enjoyed the always popular pizza pudgy pies and smores. My nephew is a very cerebral kid and it is always interesting hearing what he is up to. The things that come out of his mouth often crack me up.

This morning I had breakfast with my friend Vicki. I love it when our Sunday mornings work out so that we can meet. Then I found myself at loose ends…out of sorts and floundering with what to do for the rest of my day. I’ve been pondering “fine lines” a lot. The fine line between feeling relaxed and feeling bored. The fine line between freedom and loneliness. The fine line between keeping busy and avoidance. The fine line between feeling your feelings and stewing.

In two weeks I’m going to a wedding for Jason’s nephew. I decided to get out of the house today and go find a dress…and then I needed new earrings. And the whole time I’m out I’m turning “fine lines” over and over in my head. Does this happen to other people? Like, I’m out shopping and I’m not really all there. I’m up in my head thinking. Watching other people. Knowing that I am really only out because I’m bored and every other fucking thing I can think of to do I really only want to do with Jason.

So I come home. Make a little nest of everything that I would want on my deck…laptop, book, snack, remarkable tablet, headphones, phone, gin and tonic, ball thrower for the dog, etc and I write. Because frankly it’s the only thing that feels like anything when the rest of life feels like nothing. Fine lines…grief and depression…anxiety and worry…not wanting to live and wanting to die…so many fine lines.

And I Hate It

I wake up in the morning
Bleary-eyed
Blood stream screaming for
Its caffeine infusion

Stand silently on my deck sipping
Staring out at the yard
Birds sing good morning from the trees
Snacking on the seed and nuts I supplied

Steam rises enticingly from my mug
I keep sipping
Willing my cells to surrender to the sun
Shake off the sleep

As I listen to the song of the sparrows
The fountain babbles unceasingly
I tell myself that I am at peace;
But I hate it.

Driving home from work
Mask slips from my face
Smile fades
Slip into my garage spot

No spouse to greet me
Just dog kisses
Kids wanting supper
Pour a glass of wine

Sit in the yard
Toss the dog’s tennis ball
Douse the plants with water
As burgers sizzle on the grill

I tell myself I am relaxed
I’m strong and in control
The scene seems stress-free;
But I hate it.

Evening comes
Solitary hours
Outside feels easier than in
Start a fire

Watch the flames flicker
Swat the mosquitoes
Birds fly in for a few more seeds
Before they settle in silence

Night falls slowly
Stars blink into existence
Darkness blankets the yard
Sleepiness creeps in

I tell myself I love the fire
The dogs snuggled next to me
Serenity in the darkness;
But I hate it

Douse the flames
Close up the house
Slip between the sheets
Dogs cuddle at my side

I tell myself today was fine
The hole didn’t feel as heavy
The hurt so sharp inside
The loneliness so constant

But the lies are laid bare
By the tears in my eyes
The emptiness in my arms
My insides churn with grief;

And I hate it.

I’ve managed to string together a few “pretty good” days in a row. Anna was home this past weekend. We had coffee with my sister on Saturday morning. Then she potted all of my outside flowers…in between rain showers and having to run and get more dirt…we grossly underestimated the amount needed. On Sunday morning I had breakfast with my friend Vicki and then Anna and I headed down to Red Wing for a wedding shower. Jason’s nephew is getting married next month. My first Great Nephew was also at the shower…nothing can beat two week old baby cuddles. Yesterday, I got it in my head that I wanted to plant some elevated beds with veggies. My sister-in-law helped me with that project.

Sometimes people ask me how I write my poems. A variety of ways really. Sometimes I don’t know what I’m going to write until I sit down at my desk. Sometimes something in nature inspires me…like “Tree of Enchantment” or “Fall”. I wrote a poem for my friend Terri after I was at her house and we were talking about how we hate it when people say we “lost” our husbands…like they are a missing sock or something. Sometimes my poems come from a phrase I have been turning over in my head….”Fairy Tale” was the result of thinking about “happy endings” for days.

Often my poems are emotions that I’m trying to make sense of by putting them into words. That’s how the two poems I wrote tonight came into being. One of the things that I struggle with is being able to “appropriately” celebrate other people’s happiness and big life occasions….babies and weddings being the most difficult. Of course, babies and weddings are happy occasions and I am happy for the people that are celebrating them…I LOVE babies and weddings…but they also are very sharp reminders to me that those days are over…I will never feel that happy again. Don’t get me wrong, I still want to share in those occasions…but I will also be sobbing later.

So I sat down and thought I was going to write a poem about that emotion. I even wrote “Yesterday” at the top of the page and then this poem came out of nowhere.

Looking Down

Heaven is said to be the
Ultimate goal

When you breathe your last and
Release your soul

They say it’s a place of
Beauty and peace

Where God gathers you close and
All your pains cease

But what do you do all day
Without your family

Your daughters and sons
Do you miss me?

What are you thinking
When you look down from a cloud?

I hope you see our kids and
They make you proud

Anna leads the way
Strong and confident

Following her passions
To every continent

Seth is finding his path
Winding as it may be

Struggling with his own grief
He still takes care of me

Levi watched the way you
Loved me for years

That love he shows his girlfriend
Never causing her tears

Our brood is finding their way
I wish you were here to see it

To enjoy them next to me
Not just in spirit

It was definitely an “I’m not really sure where that came from” moment…but it worked, so there it is. I immediately finished that one, renamed it…and then wrote my “Yesterday” poem

Yesterday

Let me tell you about yesterday

Yesterday I met a guy
A tennis-playing computer nerd
Something about him caught my eye

Let me tell you about yesterday

Yesterday we kissed for the first time
We were in his brother’s dorm room
After that I called him mine

Let me tell you about yesterday

Yesterday we went “all in”
Said our “I do’s”
In front of family and friends

Let me tell you about yesterday

Yesterday we grew our family
A daughter and two sons
A perfect Fregien trilogy

Let me tell you about yesterday

Yesterday we laughed we loved
Cried and fought together too
But always rose above

Let me tell you about yesterday

Yesterday we had date night with friends
Holding hands, laughing, meeting each other’s eyes
Anticipating night’s end

Let me tell you about yesterday

Yesterday our heads shared a single pillow
Whispering our dreams
Our plans for tomorrow

Let me tell you about yesterday

Yesterday my soulmate died
The world kept on marching
Taking tomorrow in stride

But I just want to tell you about yesterday

Three years ago today Jason had his first MRI…of what would be many…and we got the call that he had a brain tumor. The very next day we met with Dr. Hunt, the neurosurgeon, and heard the word “Glioblastoma” for the first time. And that is “the day everything changed”. Coincidentally, May is also Glioblastoma Awareness Month and Mental Health Month.

Grief has five pretty well-known stages…denial, anger, bargaining, depression, acceptance….that in my experience are pretty much bullshit. While I have felt all of those…they definitely have not been in that order…and I go back and forth and around and around with them all the time. Kind of like they are all there in the background, but at any one moment I feel one…or even a couple…more strongly.

Anger is one of the hardest ones for me to handle. I know that I am angry for a lot of reasons. I’m angry at circumstances. I’m angry at God. I’m angry at my loved ones. I’m angry at our health care system. I’m angry at society. The list goes on and on. Most of the time, my anger gets tamped down because I don’t feel like it fixes anything. I draw it into myself…spend more time by myself…go “radio silent”…until I can “deal” again. Mostly, it’s when I’m sleeping that my anger comes out.

Anger

Eyes snap open
Jaw clenched tight
Teeth begging for mercy

Heart pounding
Blood throbbing in every vessel
Lungs fighting for air

Brain and body working tandem
Rescuing me 
Anger pulling me under

Red so hot and dark it blackens
Like the hottest coal in the fire
Or the pits of Hell

The coal sparks
Ignites
Strengthens in my dreams

Morphs into a ball of fire
Uncontrollable pain
All-consuming

Unable to contain it
My mouth opens
Raining flames of fire and hurt

Mindlessly burning
This world that has
Deserted me

But I live in another dimension now
Even as a dragon of pain and anger
In my unconscious

The world is protected
Doesn’t see me
Doesn’t feel my heat

The dragon lets out one more roar
Tears of molten lava run down her cheeks
The fire banks

But the ember remains

The return of the dreary, cold weather here in Minnesota has been really tough on my mental wellness. The week of warmth that we had did so much to perk me up. I was getting excited about spending time in my yard…and now I’m back to restlessly wandering around my house…staring out windows…playing piano…reading…feeling frustrated and lonely.

Yesterday after work I actually hopped on my treadmill. Only make it about 25 minutes before my “Alaskan Trek” got to be too much for me. Maybe I should have started with a flat walk through the desert or something…lol. I was reminded of how dreadfully out of shape I am…but also how good it feels to sweat….so that’s something.

The usual Saturday rhythm had me dropping Levi off at Svea’s house at 8am. I decided that I was going to try to give myself a better start to my day and I stopped at Curiouser Coffee on my way back home. Ugh. It’s so hard to find things “out in the world” that I find enjoyable doing by myself. I envisioned sitting with my coffee, my tablet, and my book…feeling all cozy…maybe writing…maybe reading…instead I wrote while I people-watched. What’s wrong with that you say? Well, I was literally the only person that was there solo…and that started to feel shitty pretty quickly…and my poem about getting coffee on a Saturday morning took a turn. I’m going to try again, but bring earbuds so that I can be less distracted.

Saturday Morning Coffee

Sitting in the coffee shop
Sipping
Saturday morning brew

Wet and cold outside
Winter lingering
Won’t let go

Sitting at my table
Solo
Soaking in the atmosphere

Watching as others
Wander in
Wipe the wet from their faces

Solidarity in our quest to
Secure our
Sweet morning elixir

Wishes
Whisper
Wildly 

Spinning
Swirling in my
Skull

Wet eyes
Wistfully
Watching a

Senior couple
Shuffle in
Stars undimmed in their gaze

Wife leads the
Way
While husband follows

Smooth and easy together
Symmetry developed
Seamlessly

Widow
Widower
Words blessedly unfelt

Lucky them.

I did treat myself to a new plant at the coffee shop. Her name is Judy Bloom. She is a monstera who hasn’t swiss-cheesed her leaves yet (the leaves get slits in them as they get more sun)…so I’m anxious to watch her.

I think my house has been feeling very empty and quiet and buying plants is my way of filling it with life and beauty. There are worse things I guess. I have a few in my kitchen that are blossoming right now…and a cactus that is on the verge.

Seth has been making an effort to spend more time with me…which I appreciate. Usually we watch tennis together. There wasn’t any on tonight so we started watching the Netflix Series Breakpoint…which highlights some of the players on the tour. I stayed awake though three episodes…so it must be pretty good!

After Jason passed away I received a few books from family and friends. I made it through a few pages and then threw them across the room…every…single…one. Some of them I just read the biography of the author and that’s as far as I got. “So and so’s wife passed away in 2010. They have since remarried and are living a beautiful and happy life”….blah…blah…blah. Maybe…someday…way in the future…remarrying will seem like a viable possibility. How can I say that it 100% won’t happen? But I can 100% say that it is an unfathomable idea to me right now. Jason is still my husband.

Well, last night in my wanderings around the house I came across those books and decided to give them another whirl. Still nope…as they hit the wall a second time. Every single one of them is written from a religious perspective…and just comes off as sounding like utter bullshit. Even though God has some big grand plan that humans cannot begin to understand (hmm…really?) none of the bad things are his fault, they are humankind’s fault (how convenient) and only through God can we find healing (even more convenient). And we should not question and just need to have faith that everything will be fine…everything happens for a reason…our loved ones are in a better place…etc

I can’t get behind that. I do believe in God, but I will never believe that Jason dying was for the best in some larger scheme….nope. I think we give God way too much credit, because if we were to face the truth…that bad shit happens and this world is out of His control in so many ways…that would be a truth that most people don’t have the strength to face. So we push our emotions down…because how can we feel sad or upset if we believe God is in control?….and slog on…because we have Faith.

And there are good things in this world…don’t get me wrong. I spend hours every day either outside or looking out my window…marveling at nature…and that is where I find my hope. In the seasons…in the birds…in the flowers…in the plants that fight to find the sunshine…in the freaking squirrels that keep terrorizing my dogs. I also find hope in my people…my Tribe. They are the good.

And I realize that right about now many of you want to get in a theological discussion with me…or send me the perfect book that will make me understand. Please don’t…I have enough dents in my wall. God and I have our own thing going. I’m pissed at Him…and probably will be for a good long while…but that’s our relationship to figure out.

Reality

It’s not like in the movies
Or in the romance you read
Where the widow falls apart
Pulls the covers over her head

The tissues pile up
Take-out containers rot
While she’s checked-out
The outside world forgot

And then a friend comes over
Drags her into the shower
Says some magic words
That heal the hole inside her

But those words don’t exist
And the hole never heals
She’s just learned to hide it
The world’s uncomfortable with feels

At night she roams the house
Sipping wine from her glass
Looking for his ghost
Wondering how long she can last

This morning Facebook reminded me that 8 years ago today I was watching Jason play tennis. I would guess from the picture that it was a USTA match at Baseline. Man how I loved watching him play…especially once the kids got older and I wasn’t trying to keep them occupied and quiet on the sideline…lol

Today, I got to watch Levi play in the first match of their season. He is playing 2 singles for Eastview this year. I love to watch him too and can catch so many glimpses of his Dad in the way that he plays, although Jason’s game was doubles! Jason’s Mom and Dad came to watch the match and one of his friends from school. After the match, I turned around and one of Jason’s tennis partners and a friend from way back was standing behind me…Barb (the one standing on Jason’s left in the picture below). I was so stunned. I know I gave her an awkwardly long hug….like I could feel her try to let go at one point, but I just wasn’t done yet. I had been thinking about her just a few days ago for some reason, and then there she was. Made a trip down from White Bear to watch Levi. I did okay chatting with her a little bit and then just started to lose my shit…can you say hot mess? I shooed her away before we both became real disasters, but it was so good to see her…and I hope I didn’t scare her away. Levi won BTW 6-1, 6-0.

I got to spend some nice time outside after the match. And got to writing a poem about one of the ideas that has been rolling around in my head the past few days…happy endings.

Fairy Tale

Everyone wants a happy ending
The fairy tale
The ride off into the sunset

Then tragedy hits
The prince is gone
And darkness falls

Loneliness overwhelms the princess
Alone in her tower
Befriending the plants and the birds

Unrecognizable to herself
Her kingdom in shambles
Her crown tarnished and tilted

The plot twists
A cliffhanger
A new chapter

But the princess is lost
In the fog of grief
Without her prince

The weight of the kingdom
Heavy on her shoulders
Paralyzing her

Her most trusted advisors
Tell her to leap
But her trust in the world is shaken

Her poor kingdom has suffered enough
One more blow
Means permanent decimation

So she withers
Like a grape
On the vine too long

Her full potential
Yet to be written
The pages left blank

Waiting for the princess
To write her
Own ending.