Tag: glioblastoma

I’ve been kind of quiet this week…mainly doing a lot of processing in my head of frustrating feelings that don’t seem to make sense. Major anxiety…restlessness…really teary…a lot of the “I’m tired and don’t want to do this anymore”. But why?? It’s been a good week!

And that right there is the “problem”. I don’t trust it. I’m on high alert waiting for something bad to happen and take away my happy. I don’t trust my happy feelings because I’ve been faking being okay and being fine for so many years…I don’t know what’s real anymore…so I overthink it…analyze every nuance of it. And it’s fucking exhausting and frustrating as hell.

I talked about this a lot with my therapist yesterday. Apparently it is a pretty common defense mechanism in people who have gone through significant trauma in their lives…so I guess I’m “normal”…ha! The world (people in general) hasn’t…for the most part…given me any feeling of safety and security in the past few years…so as I’m trying to venture out more and more…all of my defense mechanisms are kicking in…even when I’m really okay. She said the key is to keep grounding myself in feelings that I do trust…and for me those are pretty simple things…the sound of water…the sun on my face…trail under my feet…wind in my hair…my kids…my tribe

I’m spending my weekend at a cabin on a lake…so hopefully I’ll be able to get lots of those grounding moments in. I feel a huge need to sit in a patch of sunlight and gaze at the water. Listen to the birds and the water lapping at the shore.

Yesterday went nothing like I envisioned it. The kids and I went out to breakfast with my BIL and SIL…and then…as we were leaving the restaurant…Anna and Levi decided that it would be the perfect day to CLEAN THE GARAGE?! WHAT???!!!! At that point Seth decided that he had made the perfect decision by deciding to work yesterday…lol.

That was not at all what I felt like doing either…I was hoping to be able to slip away for a bit with the top down…can’t really leave the kids working by themselves though…and the lawn really needed to be mowed. So I gassed up the mower…slipped my headphones on…and did all my processing by myself while attacking the lawn. With all the sweat dripping down my face…no one could tell there were tears mixed in…it worked pretty well.

By the time I had the lawn mowed, the kids needed my input on what to do with a few things. We finished up the project together…and were all exhausted.

Maybe this is the way we spend “Jason’s Day” from now on…family project. I think he would like that.

Thank you to everyone who kept us… and our family and friends who are grieving Jason… in your thoughts yesterday. It was appreciated.

I often wish dates didn’t hold so much power over me…but they do. As much as I tell myself that today is just like any other day…it isn’t. In our culture we are taught to commemorate the “happy days”…birthdays, anniversaries, etc. The sad days in our lives…not so much. There’s not even a word to call this day…the anniversary of Jason’s death…Jason’s death day…everything sounds and feels wrong. Amongst my widow friends…we just call it “Jason’s Day”.

And just as there isn’t a word for this day…there is also no set way to spend it. Usually just by doing “whatever feels right”. Well…on this day…NOTHING feels right. It’s literally the day everything went to shit. And then there’s the balance between me doing what feels right for me as a wife mourning her husband…and also being there as a mom for our kids mourning their Dad. One of those things always takes precedence over the other…and that’s okay.

Our kids, after all, are where I see Jason alive in this world. Levi has his Dad’s capacity for loving fiercely…dedication to family…loyalty to his partner. Seth has Jason’s compassion…kindness…grace. Anna, well I’ve said it before…she has her Dad’s brain. All of the things I loved about Jason…spread out over these three humans we made together.

So, we’re going to start the day by going out to breakfast together…and then Seth is going to work because that feels right to him…maybe Levi will spend some time with Svea…and then we’ll see.

The voice inside me saying “I’m going to be okay” is quieter today…but it’s still there.

I feel fragile today. I worked last night…and it was a rough one…super busy…lots of really sick people…transfers to the hospital…and then tech issues on top of that. I woke up this morning with a nagging headache…probably from the tears I can feel right behind my eyes. I’ve been trying to psych myself up all morning….but I think it’s just going to be one of those self-care type days. Have some grace with myself…take it easy…don’t let my mind wander to tomorrow while it’s still today.

Maybe it’s time to load up my “gazebo tray” with all my gazebo essentials…notebook, pens, beverage, book, knitting project…and head out to my spot.

I love Thursdays because they are therapy day. That sounds really strange to say, but it’s true. When I think back to the end of May….of where I was mentally and emotionally when I first started seeing my therapist…I am literally scared for my life. And I don’t ever want to feel like that again. I’m grateful to the friend who texted me the link to this therapist…twice…and nudged me hard to make an appointment.

Therapy hurts…it’s painful…it’s hard work…but my therapist has shown me time and time again that she’s never going to take me to a painful place and abandon me there. She is always right there with me and brings me back to safety…makes sure I’m on even ground before saying “good bye” for the week.

I’ve had people ask me what my therapist does or what she says or suggests about particular situations. The truth is she doesn’t suggest anything…doesn’t give any advice…or minimal advice if I specifically ask for it. Bottom line…she listens while I talk. The past couple weeks we’ve been doing this technique called “brain spotting”. You can Google it if you want to read more about it, but it’s basically finding the eye position that helps unlock feelings about a particular trauma….then talking those feelings out so completely that the trauma relinquishes it’s hold…at least that’s how it feels to me. My therapist is there to guide me…brings me around to the feelings she wants me to explore deeper…but the rest is all me and my brain doing the work. It feels pretty magical. I’m not a person that likes massages…but it’s what I imagine a good massage would feel like…but for the brain.

Today, I don’t want to think about hospice anymore…so I’m going to focus on this picture from Aug, 2020 instead 🙂

Sometimes I feel like my subconscious brain is out to sabotage me….like during the night it pulls forward all of the things that I don’t really want to think about so that “bam!” there they are waiting for me the second I open up my eyes. Not surprisingly given this time of year…this morning it was hospice days waiting for me. I don’t want to think about those days…much less talk about them…write about them…begin to process them… Those days are the ultimate knot of mixed up raw emotion…and that knot has only gotten more complicated as time has gone on. I’m not going to begin to try to unravel that by myself right now…but I am hoping that by letting my brain acknowledge it we can put it aside for a bit (until therapy tomorrow!) and live in this day.

On this day…July 31, 2024…I have a lot to look forward to. One of them being a trip to Glacier National Park in August, 2025 with Anna, Levi, and Svea. Every time I see pictures of this gorgeous landscape my heart literally skips a beat. I’m reminded of when Jason and I went to Rocky Mountain National Park in Colorado about 14ish years ago. I tried to convince Jason then that we should move to be closer to the mountains…but he nixed that idea….wanting to stay close to family…which of course I understood. There’s just something about the mountains though!

We were originally thinking we would stay in a lodge inside of the park, but after looking at the room options…two double beds is the biggest…we decided to VRBO a place instead. We’re still close to the park, but now will have a kitchen, laundry, and everyone will have their own bed! It took a lot of stress about the trip off my plate to get that booked. I know I say it all the time…but Anna’s brain is so like her Dad…she knows the things that stress me out and actually likes to do what needs to be done to take that stress away. She had so many tabs open on her browser last night it was giving me anxiety….but it was so reminiscent of her Dad.

Now to pick myself up and move in this day where one of my friends is going to teach me the art of thrifting before I go to work. Should be fun!

The kids and I just spent a really good weekend with most of my family…one of my brothers had to work. I think it was the first time that we have been together since Jason’s funeral. It was definitely the first time all of the cousins have been together since my youngest niece was born at the end of 2022. It was so nice to hang out and catch up on what everyone has been up to. Levi brought Svea to meet all the family. She seemed to fit in pretty well. Only kicker was Levi waking up with excruciating pain in his ear yesterday which required a run to urgent care and some meds. Thankfully, he was a trooper and tried to rally the best he could to have a good day.

It was awesome hearing memories of Jason being tossed around. One of my nephews has taken up tennis. My brother and I talked about how Jason helped to plant that seed when he rounded up all the kids and took them to the courts exactly 6 years ago today. 6 years ago my nephew tried to jump over the net and ended up with a skinned knee…now he can step over it without even trying. Kiddo towers over me…well over 6 ft tall. I really enjoyed being able to talk tennis with him this weekend. Jason would have loved that his love of tennis was passed on.

One of my sisters shared with me that Jason was the first one to let her drive a car. Apparently it was one of the many times she stayed at our house over the years. She said she was 14 or 15 and Jason took her to a parking lot and let her drive our gold Saturn. I had no idea!

I woke up in my tent this morning…looking up at the ceiling…thinking about how good the weekend felt…and then the wave of sad just hit. It’s hard to feel such a mix of such strong emotion. I felt like I finally found some “ease” around my family again…like I was finding my groove…feeling supported and loved…and then “wham” just like that…sad, teary, ready to go home…even though I had a really, really good weekend and nothing happened that upset me…quite the opposite. My therapist always tells me that Love and Grief go hand in hand…and quite often it will be the times I feel the most Love that the Grief will follow closely behind. She kinda knows what she’s talking about I guess!

Last time I blogged was yesterday in the very wee hours in the morning. It was easily the 2nd worse night of my life. Things had happened that completely gutted me and decimated much of what I thought was true and still constant in my life. I couldn’t stop crying…no matter what I did…the tears just kept coming…by the time my alarm went off to get up for work I just couldn’t do it. I felt physically ill…dehydrated…had a mother of a headache…and I was still crying. I called in sick to work. I knew I needed help or I wasn’t going to be able to pull myself back up. So I asked for it…and my tribe came through for me.

Today I had therapy and she didn’t have any solutions to offer, but she did help me process all my feels…and by the time I left there I felt able to just shut my brain off about it. Folks…my brain doesn’t like to shut off…so when I am able to shut that fucker up it is like such peace.

I came home and I’m sitting…eating lunch all by myself…and suddenly I had this loud blaring thought it my head…and it was this “YOU’RE GOING TO BE OK”. Might seem simple, but I have never thought that before. People have tried to convince me and I have never believed it. It was the biggest epiphany over frozen Trader Joes pork buns ever.

I still have a ways to go before I achieve “ok” and I’m sure there will still be lots of low times…tears…hopelessness…loneliness. But I’m figuring it out…connecting with people in ways that feel real and genuine. Trying new things. Making plans that go past the next day…or week…or month. Our kids are blossoming into such awesome young adults and I’m enjoying every second of that. We are pretty tight as a family unit and we talk about their Dad all the time. He is still very much present with us every single moment. The four of us are all going to be okay.