Tag: glioblastoma

Weekends are rough…especially holiday weekends. When “everyone else” is doing fun things with family and friends…and I’m staring at a calendar with three full days of “nothing”. And it’s not like we had any big Labor Day tradition…we would have just enjoyed the long weekend in each other’s company…doing whatever we decided to do…whether it was yardwork or going for a hike.

This time the weekend turned out pretty good. Levi’s girlfriend was Up North at the cabin, so he spent most of the day on Saturday and Sunday with me. On Saturday he helped me get my gazebo sanctuary set up. It turned out so good. I am completely happy with it!

It feels very private and peaceful kind of nestled back in the trees. I have birdfeeders and a bird bath back there and have plenty of birds flitting about. The Court 8 sign I brought home from work. A few of our tennis courts were recently converted to pickleball courts. We had some extra court signs so I brought this one home. 8 for August…our anniversary month…and 8 for Jason’s birthday…Oct. 8th.

The firetable is perfect to flip on this time of year when the sun starts going down. I can literally sit out there for hours…or until the mosquitoes chase me in.

Jason would be very happy that I have my gazebo sanctuary back. He knew how much I enjoyed spending evenings out there recharging my batteries with a fire, a book, and a bottle of wine. Sometimes he would be out there with me…at least for a bit…but usually he would head into the house and have some time to himself as well.

On Sunday, I started out my day with breakfast with a friend. Then Levi and I made ribs on the grill and he made Monster Cookies for his girlfriend. She is gluten intolerant and he wanted to make her something without flour so that she could eat it. There are so many times as a parent that I worry that I have “messed up” our kids somehow…watching Levi with his girlfriend is not one of those times. It is one of those times when I am mentally giving Jason a high-five that we did something right in the modeling of a loving relationship to our children. He is the most considerate and respectful of boyfriends…supporting her in her interests…going to her tennis matches…making sure we have food she can eat. They are always smiling and having a good time together.

Today, I spent time with my sister-in-law Jackie. We both appreciate a good hang-out with a few drinks on a patio. She also pulled some weeds with me…says she finds it relaxing…I don’t get it…lol. After she left I hung outside with the dogs…tossed the ball for Emmett about a million times. The new fence is such a game changer!

Back to work and back to school tomorrow. I know it will be a challenging week with the change of routine and trying to find a new rhythm…again. Hopefully, I will also have new siding by the end of the week! I am sooo ready for the house project to be done!

Today I am happy to report progress on my backyard sanctuary. I came home from work today to find the fence company here finishing up our fence. I am so happy with the way it turned out. It has already made a huge difference in the way I feel both when I am out in our yard and when I look out at our yard.

Coincidentally, our deck/siding project also started today. The first step was removing the old deck. So now we have a fenced in yard and still can’t open the patio door and just let the dogs out…lol. That’s okay…it is no big deal to let them out the door in the back of the garage. It was fun watching them “discover” their whole yard today. Emmett was all about playing fetch and Linc just wanted to explore…he already found the burrs!

I am anxious to get outside now and get my gazebo all set up how I want it. I am confident that we will get so much more enjoyment out of our yard and it will truly become our sanctuary. I see so much potential now in different areas instead of just looking outside and feeling so overwhelmed I was paralyzed. Jason would really love this improvement!

I haven’t written in awhile…again. Honestly, I’ve been rethinking my blog…again. When I started the blog it was my outlet for processing my grief and my hope was that doing that would help me heal and would maybe help other people as well…both understand what the kids and I are going through and help friends and family that love us keep in touch. In reality…it has been a great outlet for processing…but I also put a lot of myself out “there” and make myself very vulnerable. In doing that I have opened myself up to a whole new ocean of heartache…when my heart can’t take much more. But….I like to write and I think it does help unravel all the thoughts rolling around in my head…so here I go again…

Last time I wrote it was the first anniversary of Jason’s death. In the widow world we all refer to that day as “Jason’s Day” or “Jeff’s Day” or “Ron’s Day”….it’s just easier. The day went nothing like I expected…mostly because I was focused on other people’s grief instead of my own. The only way I could do that was by forcing down all my sadness that day and focusing on the good. It did help me have a better day. The day after Jason’s Day I was going to have a “me day”. That didn’t happen because Anna ended up with a rare day off of work and her and I spent the day together. That was important…but again…pushed all my sadness down.

If there is one thing that I have learned in the past year it is this: Ignoring Unpleasant Emotions Never Works. Does that mean that I sit around all day being sad? Actually…sometimes yes…I have days where my sadness just cannot be ignored. Where no matter what I try to “do” I find myself back on the couch with my dogs next to me riding out waves of pain…or sleeping the day away off and on just to give myself a break from feeling like shit. But I think it is giving myself permission to do that on those days that helps me function when I need to.

So after pushing my feelings down for a few days after Jason’s Day…all of my grief came rushing back with a vengeance and the past couple weeks have been rough…and most of my grief is coming out all sideways…mostly as anger and hurt…which is even harder to deal with than sadness. And that’s when I find myself wanting to withdraw from the world. Hide myself in my house. Bandage up my heart…again. Build the armor a little bit thicker. Go to a friend’s house…drink too much…rage and cry on her couch.

Thankfully I have friends and family that love me enough not to let me hide too long…and keep me engaged with the world. In the past few weeks I have discovered that I love going to St. Paul Saints baseball games…I went to the Guthrie in Minneapolis to see a play for the first time (Emma…soooo funny)…I went to my first NFL game ever (Vikings vs 49ers) and absolutely loved that as well…I had a great visit with one of my sisters and my nephew and one of my brothers and his family. And after every single one of those fun moments I came home wanting so badly to tell Jason about it and all the pain of my reality came rushing back with a vengeance and really, really sucks. I want to come home giddy from fun times and maybe a little tipsy and cuddle up against his back and wake him up. I just can’t get used to him being gone.

And now it’s been a year…and wow…people have a lot of opinions on how I should feel or what I should do. Things I have heard recently…*I should stop choosing to be sad *I should just keep busy *I should be grateful for what I have *I should be proud of myself *I should focus on the good things every day *I should choose to be happy *Jason wouldn’t want me to be alone so I should look for someone else…melded with I’m too young to be alone for the rest of my life. It is amazing how people who have never gone through anything remotely similar feel as if they are somehow qualified to give me advice. Please don’t do that.

A little update on our kids: Anna is back at school for her Junior year(!)…Seth is starting online classes in a week and has a new girlfriend in Sweden(!)…Levi will be starting his Sophomore year in about 10 days and just took second place yesterday in a pickleball tournament with his girlfriend (pickleball is just for fun…tennis is still his jam). I am so proud of all of them.

The day is here…and actually it isn’t hitting me as hard as I anticipated…at least not yet. I think the past two weeks were harder on me…remembering the “beginning of the end” so to speak and all the emotions wrapped up in that.

Today I am focused on honoring his memory with our kids…which for them means doing things he liked to do and eating some of his favorite foods. We are going to spend time this afternoon playing tennis together. Then we are meeting my in-laws for dinner. I am making some of Jason’s favorite desserts to bring along.

I’ve been spending a lot of time looking at pictures from before Jason was diagnosed…remembering all the happy years we had together. I think we packed more love and happiness in almost 21 years of marriage than a lot of people manage in their lifetimes. I will always feel grateful and lucky that we found each other and had such a happy love-filled life together.

Tomorrow I’m taking a day for myself. My happy place is by water…so I’m going to find some water…try to find my peace and recharge a bit.

Have you ever thought about the difference between “belonging” and “fitting in”? I have been thinking about that a lot this week. Belonging is a feeling of “rightness”…like you are accepted for who you are…you feel at peace and happy…you have a place…security. Fitting in usually means you need to change something about yourself…your true self is unacceptable…you are constantly stressed…worried…on edge. Belonging fills up your cup…validates you…energizes you. Fitting in is exhausting…leaves you feeling empty.

In the past year my sense of “belonging” has so diminished that I don’t even know how to attempt to get it back…I don’t know if it is even possible when I feel like I don’t even know who I am anymore. I’m constantly trying to fit in. It works for awhile sometimes, but never for very long until I am hurt once again. I am so exhausted. And so lonely I feel like I’m being crushed by it.

Loneliness is one of the most horrible of horrible feelings….especially during grief. I know that there are many people that are grieving Jason. He is very well-loved. Many of those people have their person that they get to grieve with. I have my kids, but they are very private. They don’t want to grieve with me very much…which is fine. They are doing things their way. I have a handful of people that I turn to. They are all fantastic and I love and appreciate them…but damn I wish I had Jason’s arms around me…that’s where we both belonged. He and I could literally get through anything together…me by myself? Yeah…that’s not going so well.

Today was another day where I was pulled between memories of the past and the present. The kids and I worked a lot out in the yard this morning. It felt really good to be working together as a team. The fence posts are being installed in a week! Seth reassured me that we are making good progress and that everything will be set to go. We also had birthday dinner for Seth tonight with family and friends. There were a lot of smiles and laughs.

I kept getting pulled back here though…

where Jason and I were a year ago. Dancing to our song one last time at Jeremy and Cheryl’s wedding. His attention completely on me. His hands on my waist. His eyes locked with mine. Not speaking many words past “I love you”…but his eyes saying so much more…the most painful of which was “goodbye”.

One of my most precious memories…and one of the most painful.

Today is Seth’s 19th Birthday. Seth is our easy-going, sensitive, deep-feeling, introverted middle child. He reminds me of Jason in so many ways. There’s not a lot that bothers him…most things can roll right off his back…but he also feels his feelings very deeply and holds them very close to his chest. He doesn’t care about the “trivial” things in life…like who gets shotgun in the car (he lets Anna and Levi duke that one out)…or material things…he has a few things he is passionate about (tennis, his friends, video games) and devotes his time to those. He’s the one that will give me a hug without squirming away and his dry sense of humor makes me laugh. He is in no hurry to “grow up” and does things in his own time.

When I asked him what he wanted to do for his birthday his only reply was “dinner at B52’s”. We are actually doing that tomorrow with some family and friends. This morning he kept saying he didn’t want to do anything and didn’t want any birthday gifts. He is my blueberry-loving kid…so I decided to make him a blueberry pie. Making putzy desserts is not my favorite thing to do, but it was worth it to see the smile on his face.

My heart and mind keep taking me back to this day last year. It was the day before Jeremy and Cheryl’s wedding and Jason was in rough shape. He was suffering from a horrible headache that the pain meds weren’t even touching. I had Jeremy go check on him while I was at work and he never even woke up the whole time Jeremy was there…even though the dogs were going nuts. I spent the morning at work sneaking phone calls to Jason’s nurse trying to figure out some new combination of meds to try. Luckily, we were able to get the pain under control right before rehearsal and dinner.

It’s days like today where I feel pulled between the past (Jason) and the now (our kids) that are an even harder struggle for me. I want our kids to know that I am here for them and that things like birthdays and holidays are still worth celebrating, but at the same time I feel so sad and checked-out. A friend of mine reminded me today that Jason and I raised three kick-ass kids who are phenomenal human beings and doing just fine…and that making Seth a blueberry pie on his birthday just to see him smile proves that I am still a kick-ass Mom…so I guess I’ll keep blundering along as best as I can.

I’ve been quiet again lately…I know. The past few weeks have been extremely difficult. My mind keeps taking me back to July 2021. Replaying the last month of Jason’s life in my head. Tomorrow, July 20th is the day we saw Dr. Neil for the last time and she referred Jason to hospice. He had already stopped treatment…hoping that would help him feel better…it didn’t. He was in constant pain. I was communicating with his team daily trying to find the right combination of meds to bring him some relief. He had fallen a few times in the house. I didn’t know how much longer I would be able to work because I was terrified something would happen while I was gone.

I have been really busy during the day. Last week my new roof was installed. Yeah for crossing that off the list. I have been working really hard in my yard. The posts for the fence are being installed on August 1 so the line has to be cleared before that. I had a tree company come and cut down a few trees last week. I have had help from friends and family clearing, cutting, trimming. I decided that I want to move my gazebo into the back corner of the yard to make my peaceful spot. I ordered some wooden flooring for it and a canopy that should work as a roof. I’m looking forward to getting that all set up and in place.

Everything I cross off my list I hope will be the thing that will magically make me “feel better”…but the truth is that none of it really does. Yes, it feels good to get all these things done around the house…but that doesn’t touch my deep sadness and loneliness. The person that I want to share it all with is gone…and nothing can fix that.

I’ve been listening to this song a lot lately. I feel like it’s what Jason would say to me right now….but damn I just can’t figure out how…and honestly don’t really want to.

I’m struggling to write lately. A combination of things I think. During the week, I just slog along getting through day to day, moment by moment. Tackling each day as it comes along and basically just trying to make sure the kids get where they need to be and get attention from me. Levi is at a really hard age this summer where he is bored all day at home, but also not able to drive himself anywhere so I try to give him extra attention in the evenings.

I also just feel like I don’t have anything to say…except “Hey there. It’s Marie again. Life still sucks.”

Last week I went to a tennis drill for the first time since Jason died. I had done a few private lessons, and I was fine with those. The drill hit me in a whole different, unexpected way. I think it was too much like playing a match and suddenly I had this whole loop going through my head of how unfair it is that I am still here doing “Jason’s thing” and he isn’t. I managed to breathe myself out of ugly crying and a panic attack and finish the drill…but it hit me hard…and I still get teary thinking about it. Jason hated it when I stopped playing tennis “because of him” so I’ll keep going…and hopefully it will get easier.

Panic attacks seem to be my new MO…and they suck.

I was talking to somebody this week about how a person can do anything hard when they know there’s an end….especially if there is a desirable outcome. A hard workout. Childbirth. A sucky day at work. For the 15 months that Jason had cancer the hard just kept harder as his condition deteriorated and more and more of him was taken away…with the only possible end being death. And now for the past almost 11 months it’s been another whole new hard that keeps getting harder…with no desirable outcome really…no end in sight. Cue the panic attacks.

I’m struggling along. Just doing the next thing that needs to be done. Tons of things just falling through the cracks while I try to keep myself together. My rose-colored glasses have been shattered. My positive outlook on life nowhere to be seen. I’m constantly on edge waiting for the next shoe to drop…the next thing to break…the next thing I need to deal with…the next disappointment… Again…cue the panic attacks.

I feel like my world has drastically shrunk…my community dwindled…because I just can’t feel connection with people anymore and I don’t have the energy to try most of the time. I am just tapped out. Most social situations give me anxiety. I feel like I make people uncomfortable because they don’t know what to say to me and I don’t know what “normal” conversation is anymore. I can’t focus and find myself staring into space…probably counting down the minutes until I can leave….or have another drink. Too much self-medication. I know. Can’t bring myself to really care. Don’t judge my bandaids.

My whole being is one big ball of lonely hurt and sadness….and the only person that could give me hope that I can make it and be okay somehow is gone. Cruel irony of grieving a spouse I guess. I miss him so bad that “miss” doesn’t even seem like the right word anymore.