Tag: glioblastoma

Saturday Coffee

Posted on by mfregien6c146e4539

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!

Reality and The Good

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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

Tennis and Fairy Tales

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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.

Easter Evening

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Just sent Anna on her way back to school…and I’m exhausted. My “sit and do nothing” morning didn’t last long once she got out of bed. She knew all the things that I wanted to get done today and prodded me to get moving. She finished organizing my junk drawers in the kitchen. A project that I had no intention of doing this weekend…but then there was an egg hunt on Friday night…with over 80 eggs…and drawers were emptied…and most of the eggs were found…sigh

Once I wasn’t stressing over the state of my kitchen anymore we headed outside. The boys came out and helped and we got my fire table off the deck and into my gazebo. Then we had to take a break to go to brunch…yes, we were the ones at Barley and Vine that looked like we had just come from doing yardwork…oh well. When we got back we finished getting my gazebo put together…got the grill up on the deck…and put together the new bar table I got for the deck. My “spaces” are all ready for me.

It’s times like today I love….when the three of them get along and come together to help me with things that they know are important to me. Will any of them sit in my gazebo? Probably not. But they know how important it is to me. They do really like the table I found for the deck. I think it will be a good spot to have some time with each of them. Anna comes home again the first weekend in May and is looking forward to helping me with plants then. She said she isn’t going to work that weekend so she will be able to give me all her time 🙂

I’m sad that Jason is missing this stage of parenting…when the older two are young adults…and Levi is just on the cusp…and I can see the “actual people” they are. Anna’s independence and drive are awe-inspiring. Yet she is so generous and intuitive. Seth’s intelligence, sense of humor, and easy going demeanor attract people to him like bees to honey. Add to that his sensitivity and empathy and he is so easy to be around. At only 15, Levi is still figuring himself out in a lot of ways. He still relies on me for a lot, but also takes me for granted a lot of the time. He’ll help me with things, but only if he’s in the mood. I see a lot of his best qualities in the way he treats his girlfriend. The respect and love he shows her make me so proud of him.

The three of them can get along really well…when they try. Anna and Levi tend to have very similar, more dominant personalities….which can lead to some conflict…but they also have some similar interests. Anna’s more extroverted personality tends to drive introverted Seth nuts. He spends more time in his room when she is home. He also tends to just give in to whatever his brother and sister want. I have to be more cognizant of making sure he isn’t getting overlooked in the mix.

I hope everyone had a good Easter!

Easter Morning

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I can sit for hours and “do” nothing. It’s a new talent in the past few months…since I bought my new desk really. I spend hours here…sitting here…usually with a couple dogs at my feet…watching the birds at the feeder…the squirrels underneath. Today Jason’s blue jays are decimating the peanuts I put out for them. The chickadees are enjoying any small seed or nut they can fit in their beak and fly away with. Three kinds of woodpeckers are at the suet. A pair of cardinals stopped by before the blue jays scared them away. Finches and nuthatches flitting in for their breakfast as well.

Sometimes I listen to music while I sit here. This morning it’s Dermot Kennedy in my ear buds. He’s usually my pick when I’m feeling lonely…out of sorts…and know I just need to sit in that for awhile. He sits with me a lot in my sadness.

Sometimes this is where my poems are born…and there are a few lines turning themselves over in my brain…but nothing ready for the page yet.

Today is Easter. The kids and I are going out to brunch. I’m also hoping they will help me out in the yard. I really want to get my gazebo set up now that it seems like Spring is finally here. Easter was always a quiet holiday for us. We usually never even did a big meal. Most of the time we spent it outside. Going to the park for a walk…bringing a picnic with egg salad sandwiches. A lot of times Jason’s brother Jeremy would be with us. Now it’s just the four of us…and I’m taking my time this morning before the kids are up to be sad about that.

Dentist and Irises

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Trying to keep the tears away tonight. Started my day out with a trip to the dentist for a cleaning. I would say “routine cleaning” but there was nothing routine about it as I hadn’t been in there for over 3 years. Jason and I and the kids have been going to the same dentist for years and years. I think I was pregnant with Seth (!?) when we first started going there. We quickly found our favorite hygienist and she got used to our pattern of back-to-back appointments so that we could swap the kids. She knew nothing about Jason getting glioblastoma and passing away. So of course, when she called me back and said “So good to see you! How have you guys been?” it was a gut-wrenching, tear-filled moment for both of us. And the whole time she was scraping years of plaque off my teeth (I really don’t recommend it) I could tell she was just shattered. I felt like I should apologize for giving her such bad news right away on a Monday morning. Luckily, I don’t have any cavities…but surprise, surprise…stress makes me clench my teeth when I sleep…so really sexy night guard coming right up. The dogs will be horrified.

April is also a tough month for me because it was three years ago this month that Jason’s behavior started being a little “off” and he was ultimately diagnosed with glioblastoma. So, every time I look out into my yard and think about what I want to do where….my mind goes right back to the day we were trying to measure for mulch and Jason couldn’t figure it out. And from there to the day we we got a call before we were in the door from the MRI. And from there to sitting in the neurosurgeon’s office and hearing “terminal brain cancer”, “glioblastoma”, “craniotomy”, “disability”. And I would give anything to go back to the bliss and ignorance of March 2020.

April 2020 is when I fell in love with the song “Chasing Cars” by Snow Patrol. I love music, so of course there are lots of songs that take me back to different points in our relationship. This one…and I know I’m posted it here before…takes me right to those days after Jason was diagnosed when I wanted nothing more than to throw the covers over our heads and stay there forever.

This song is definitely on my list of “I Must Learn How to Play This on Piano”. I think I said in my last post that I bought a different online piano course (Pianote). It has been fantastic. Sitting at the piano gives my brain something to focus on when my thoughts start spinning out of control. This new method focuses more on learning chords…at least to start…which is working a lot better for me…and helping my hands work together…not an easy task! I’m finding success with a lot less frustration.

Last night I was thinking a lot about parenting. Just as I don’t consider myself single…I also don’t consider myself a single parent. I would never refer to myself that way. I’m just a Mom to three great kids whose Dad is only with them in spirit…but he’s still with them in every decision they make and in every bit of advice and guidance I give them. I wholeheartedly believe that if Jason were here he would be telling them the exact same things that I tell them.

Tonight Levi was sulking. I knew what he was sulking about but I kept asking him what was wrong and all I was getting was the “teenage eye roll”. Finally, I said to him “I know what you’re upset about. Do you want to talk about it and come up with a solution or keep sulking?” He looked at me…started talking…and we worked it out. At the end of the conversation I said “I love you. Maybe next time just talk to your Momma instead of sulking” and I got a “yeah”. We’re figuring each other out. It’s just extra hard when I’m “by myself” and my emotional energy is often so tapped out. But I’ll take the small victories.

And look…I grew another flower!

Resilience

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I dipped down to one of the lowest points I have been in awhile this past week. It was one of those times that it was not the never-ending physical loneliness that cut me down, but the emotional loneliness. The knowing that there is not a single person out there who honestly understands how I feel. There are people who can come close…like my friends who are widows…but even their circumstances are different. Just like I don’t know how it feels for my husband to die quickly and unexpectantly, they don’t know how my experience feels. Do I want my friends and family to know exactly how I feel? Of course not! They know how losing Jason feels to them, but it is a different experience than losing the love of your life. I’m not saying that their grief is not as deep or as painful as mine…just different.

Of course, those lowest points always hit in the middle of the night…when the physical loneliness is also at it’s worst and the empty side of the bed feels like it is the only thing that matters.

Tears at Night

I need your arms around me
Your thumbs catching my tears
Whispering I love you
Erasing all my fears

The tears are pooling on my pillow
As I pull the covers tight
And fears are running rampant
In the dark of night

I’m a hostage to my sobs
Attacking with no mercy
Emotion beaten down too long
Is nothing if not messy

The sobs have run their course
Release me from their grasp
Flip the pillow to the dry side
Wish for sleep to find me fast

And then the alarm goes off the next morning…and the last thing that I want to do is function…but I have to…and I’m still teary-eyed when I get into work…and it takes me longer than usual to get in “work mode”. I’m grateful for my tribe who are at the other end of a text or phone call at times like that.

Yesterday this flower opened up. I think just to remind me that I’m still capable of “creating” beautiful things. I have gone from single-handedly decimating all of Anna’s house plants about a year ago to not only keeping them all alive, but keeping them all thriving…and flowering. I now have over 60 plants in my house that I am constantly “babying”. I think sometimes even Anna thinks I’m whacked when I facetime her just so I can show off a new leaf. I started thinking of names for them…and then decided that was crazy.

Today we woke up to 8 inches of snow on the ground…not exactly a welcome sight…but I’ve had a really good day today. Seth…who has been an immense help lately…cleared the driveway with the help of the neighbor’s snowblower. I don’t think ours would have stood a chance with this wet stuff. I put a huge pot of chili on the stove. Made chocolate chip cookies…which Levi enjoyed especially. Practiced the piano with the help of a new online program I invested in. Talked to my sister on the phone. Watched the snow melt and the birds at the feeder. And thought a lot about resilience.

Resilience

Woke up this morning
To a world blanketed in 
White

Unwelcome snow
Crushing spirits in
April

The winter has been
Hard enough
Why now?

Don’t we deserve the 
Green life of
Spring?

I look out the front window
My poor birch tree
Flattened.

The weight of
Snow and ice
Overwhelming

My first instinct is to
Go out and
Help

Knock the snow off
Her branches
Rescue her

But what if her branches
Are encased in ice and 
Brittle?

And helping ease her
Weight will cause them to
Snap?

So I wait with
Bated breath
Hopeful

The the sun’s warmth
Will bring her back to
Life

In her own time
She will stand tall
Again.

Plumbing and Taxes

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I’m still waiting for him to come home…listening for his car to come down the road…the garage door to open…the dogs to get all excited. He’ll get out of the car…get the mail before coming inside. The dogs will get their scratches first because they’re all over him and then it’s my turn for a kiss and a “hey Babe”. Instead the mail sits in the box for weeks because I never remember to bring it in…his car will never come down the road…and kisses are a thing of the past. I can’t get used to that….and it’s been almost three years since that was my reality. It was a different life. A better life.

I should be feeling productive and accomplished today. The plumber came and fixed a leaky toilet and a water issue in our basement. I got my taxes done…even remembered to pay the property tax. And I just feel untethered. I went down a bit of a rabbit hole looking at pictures. I don’t even recognize the woman in those pictures. The easy smile…the carefree laugh…always up for shenanigans. Now I look in my eyes in the mirror and all I see is pain and tiredness. And that man…”love of my life”…”better half”…”my person”….all the cheesy, sappy things…he was mine. Life without him is a very lonely, sad existence.

Our kids are truly a bright light in my life. I honestly would do just about anything to see them smile. They each have some of their Dad in them and when I see those glimpses of him it takes my breath away. I already live in fear of the day they all are “out of the nest”…what the hell am I going to do then?? Jason and I were looking forward to being “empty nesters”…now it just feels “empty”.

Andy Grammer has always been one of my favorite artists. In fact, he was the one and only concert Jason ever went to. He released this song a few months ago. I love the song, but the hope in it eludes me most days….

Pussy Willows and Ramen

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The re-entry into “real life” has been a little bit rough this week. I learned that with subsequent vacations I really need to give myself a day off before going back to work. I don’t do well handling the week when I am running on a huge sleep deficit right away Monday morning.

A couple of good things this week though. Seth and I have continued to really build our relationship. He comes upstairs and actually asks me how my day was. I also bought a subscription to Tennis TV since we no longer have cable. Best investment ever. It’s $120 for a year subscription and Seth and I have “tennis dates”. Tonight it was just he and I home so we watched both Indian Wells Men’s Semifinal matches and ordered in from a Japanese restaurant he has been wanting to try. Super low-key and fun.

Anna also came home last night and is home for the next week on Spring Break. Of course, she is working most days…but still feels good to have her home. Her and I were talking out plans for the backyard today….where we are going to plant things and whatnot. Last summer with getting new siding, deck, and fence it felt like we were “under construction” for the majority of it. This summer we are dreaming big dreams. A little tricky since she will be in South Africa the whole month of June, but she has assured me that we will have time to get planting and pots done before she goes. She gets my need to have “peaceful spaces”.

I already bought one new plant that is going to find a home in my backyard this summer…and is living on my desk until then…

Tree of Enchantment

Salix Caprea Pendula
Tree of Enchantment
Hand Grafted Weeping Pussy Willow

Sitting lonely on a storeshelf
Your trunk and bare branches
Passed over

Overshadowed by the
Romance of the rose
Hope in the tulip and the daffodil

Yet you call to me
As a kindred spirit
Strength in your sadness

Unapologetic about yourself
Your branches bending
But resilient

And I tuck you in my cart
I will care for you
Even in your sadness

Sit beside you
And listen to your branches
Telling your story in the wind

And I will never ask you to change
Hide yourself
Be anything but who you are

California Day 7 and Home!

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Our last full day in Cali was Saturday. We spent the day watching tennis…of course! The boys and I watched Sinner v Gasquet, Paul v Struff, the end of Murray v Albot, Rybakina v Kenin, and McDonald v Rune. My favorite player to watch was Sinner. Love his style and how he covers the court. I will miss watching tennis this close with mountains and palm trees as the backdrop…especially the mountains!

After tennis we went back to our house and got all packed up…anticipating an early morning with a 9am flight. Instead our flight was delayed to 5pm and we ended up having to kill some time. I enjoyed one last Bloody Mary by the pool and we went to Elmer’s and had a huge brunch.

Then we had some “hang around the airport” time. I was thankful that the boys were very easy-going and just went with it. Our plane landed back in cold and snowy MN about 10:30 last night and it was about 11:30 before we were back home.

Ooof…it was tough getting up for work today and I am so tired, but also feeling more relaxed and energized. As emotional as tennis vacations can be for me they also feel good because they make my boys so happy and feel like a link to Jason. Seth gave me the biggest hug on Saturday night and thanked me for vacation and told me he loved me. That right there is priceless. Jason would be so proud of that kid. He has really stepped up in the past month and I think noticed how hard things are for me. Many, many times this week he made sure I was okay…doing good…having fun. He made sure I wasn’t getting lost…that I was getting to see the players I wanted to watch…that emotionally I was good. We had so many good conversations. Levi is a little more self-absorbed…and girlfriend-absorbed…right now, but he’ll get there…especially when Seth has been giving him a little pushback.

Tonight I’m enjoying sitting at my desk…writing and enjoying some quiet time…dogs at my feet. I really missed this spot while I was gone!