Tag: glioblastoma

2:30 am….I’m sure you’re probably nice and all…but…I would rather be sleeping. I think there is a saying along the lines of “nothing good happens after midnight”…well I have no good thoughts after midnight.

Here’s me trying to make sense of it all so maybe my brain will shut the fuck up. In our relationship I was usually the “leap before I look” type and Jason was the “look…make a spreadsheet…then leap” type. We complimented each other well. One thing that drove him insane is that I would have zero sense of self-preservation walking across a parking lot…I would literally leap before I looked. Countless times his hand was on my elbow pulling me out of the path of a car. The funny thing is that I only was like that when he was with me. If I was by myself, or had the kids with me…you can beat your ass I was looking for cars.

I mentioned the other day that I love wearing overalls. Well, all of my overalls have a little…like loop on the back…I guess where you could hang them up or something. Well, Anna…whose brain is so like Jason’s that I am constantly astonished by it…pulled on that loop on my overalls the other day and said “what is this thing for”. And I immediately said “well, your Dad would’ve yanked on that to pull me out of traffic”. And now I have this visual in my head of Jason behind me with his finger in my overalls making sure I look both ways before I leap…not that there’s too much leaping going on these days…but I’m trying.

Around this same time that I had this conversation with Anna I was texting with one of my SIL’s and she told me about a philosophy on grief that she had heard…that it’s like a stone in your pocket…that is always there…you always feel it…it never gets smaller…but over time you get stronger and it’s easier to carry. Well, overalls have a lot of pockets and right now I feel like I’m carrying one huge stone that is the loss of Jason in one pocket…and then countless numbers of other stones of various sizes in all the other pockets…for all the other accompanying losses. It’s a good thing those overalls have shoulder straps or my pants would be around my ankles.

What do I do with all those rocks? Because right now, as I’m trying to tread water and keep my head from going under…well…rocks don’t help at all. Tonight I’m just trying desperately to feel Jason’s finger in the back loop…but shit it’s dark and lonely at now 3:15am

Seth’s 21st birthday is coming to a close and I’m thinking about how proud I am of him. He’s quiet and sensitive and has such a good heart. He often acquiesces to the stronger wills of his brother and sister…poor kid hasn’t even tried to call “shotgun” in the car in years…but he knows how to dig his heels in about the things that are really important to him. His smile has been coming more easily in the past year…and that is the best thing ever! He loves talking pro tennis with me…him and I are taking a trip to the BNP in Palm Springs next March…and loves trying new foods…especially anything Asian. He’s just a great young man.

In true Seth style he said he “didn’t care” about his birthday…but then got home early from work and sat and chatted with me while he ate dinner and drank his first legal rum and Dr. Pepper. I’m not a rum-drinker so that bottle of 5 barrel from Belize had to be dusted off a bit…lol

Do you ever get sucked into those videos on social media of reunions between members of the military and their families? Like the kid is at school doing his school stuff and then turns around and suddenly his Dad is there. I got sucked into the social media black hole of watching those tonight. I wish that would happen with Jason…sure could use him tonight. Some nights “alone” feels more lonely than others…tonight is one of those.

First things first….and to start on a lighter note…today is my Bronco’s First Birthday…I guess actually her Gotcha Day because I bought her used…but her first owner way underappreciated her and traded her in after only 5,000 miles. I guess he wanted a hardtop instead…fool. We celebrated by putting the top down…taking the dogs for a walk…and going grocery shopping.

Seth was working tonight, but Anna, Levi, and I made dinner together and then played cards. Anyone who’s every played a game with Anna knows that she is super competitive. The good news is that she is learning to laugh at herself. Man, there was a lot of laughing tonight.

Now for the heavy…because holy shit this time of year weighs on my mind a lot. This time of July, 2021 is when Jason’s neuro-oncologist referred us to hospice. She had run out of treatments that she thought would work for him and really wanted him to retain what quality of life he had left without tests, pokes, and doctor appointments. His last MRI had been a disaster and he had told me in no uncertain terms that he was “done with those fucking things”.

We had two huge things we were looking forward to…one was Jason’s brother’s wedding…the other was a trip to Cincinnati for a tennis tournament. His headaches were so bad at this point I was in constant communication with his palliative care doctor trying to find the right cocktail of drugs so he could even attend the wedding. He was incredibly unsteady on his feet…had fallen in the house twice… I was still trying to work, but my days were so filled with anxiety over how he was doing at home I knew I was going to have to stop working soon. I would get him up before I left for work….make sure he had his pills and breakfast…make him a sandwich and put it in the fridge for lunch…write the schedule for the day clearly on a whiteboard so he would know what was going on. Everyday was overwhelming anxiety and stress…all while trying to put on a brave face for the kids…smile for Jason…fake that I was holding all my shit together.

One memory that I hold onto very tightly from during this time…Jason’s short-term memory was horrible at this point…and more than once we would be laying in bed at night and he would look at me and say “I can’t remember if I told you today that I love you”. What I wouldn’t give to hear that one more time. He really was the finest gem of a man…not sure how I got so lucky that he was mine.

Hi…it’s me. Not sure you remember me….but that’s okay because I don’t remember me either. I don’t exist anymore…at least not the way I did before…not sure who I am now. I have an Emily Dickinson quote on my laptop “and I am out with lanterns, looking for myself”….and that is exactly where I’m at.

So…I haven’t written in awhile….I could give you a few reasons for that…but really it all boils down to a huge struggle with my mental health. I have been in a very dark place…scary thoughts circling in my mind…going to bed and thinking it would be just fine if I didn’t wake up in the morning. Am I okay now? No. But I finally did find a good therapist who is worth the insane amount of money I pay her to convince me I’m not a piece of worthless shit and my life has value.

So…why write now. Well…basically…a really good friend made me realize how much I missed it…and how much blogging helped me sort out my thoughts. And I also 100% believe that our society has a very fucked-up viewpoint of grief. And if my blog somehow helps shed some light on what life is really like for a grieving person….well, that would be awesome. Because it’s a very, very lonely place to be.

I do have to say here that I don’t want any of my friends or family to feel obligated to read my blog. It’s your choice. You can just not…and that’s fine with me. I don’t need any explanation.

So here are 10 things I know about me…if you need help deciding whether you want to read my blog.

1. I swear…a lot. I put that first just because I know “bad” words are coming up in this list and I want you to be prepared…lol
2. My kids are my world. They are not perfect, but they are fantastic. Yes, they all live with me. Yes, I pay for everything. No, Seth is not going to college. Yes, Anna is still working for Dick’s Sporting Goods and is not looking for any other job right now even though she has a degree in Biology. If you feel like you need to judge any part of that…well you can fuck off.
3. Nature…especially water…centers me. My therapist convinced me to lace up my hiking boots again. The dogs are happy that we’re back to daily walks around lakes and tromps in the woods looking for waterfalls. Anna, Levi, and I are starting to plan a trip to Glacier National Park for next August and I am having a whole mix of feelings about it.
4. I adore my Bronco. I bought her a year ago and have had zero regrets. Driving with the top down and my music blasting on a nice sunny day is magical to me. I don’t even need a destination…although I usually end up by the river. She helped me put a little badass and some fun back into my life.
5. Overalls are the perfect pants. One of my friends who has sported them for years turned me on to them and now they are really all I wear.
6. Doc Martens and Hey Dudes are the best footwear. I don’t remember how or why I got my first pair of Doc’s….but now I’m obsessed… I find them too hot for summer though…so hello Hey Dudes. My feet are hard to make happy…but those two brands are fantabulous.
7. Music and poetry are essential in my life….whatever mood I’m in.
8. My self-esteem and feeling of self-worth are absolute shit. Jason loved me without reservation. Yes, there were things about me that irritated him…but he took those things as part of me…and loved the whole me. As I did him. Now, with him being gone…and feeling overwhelmed with grief…relationships are tricky. Most of the time I am convinced that when people are with me it is out of a sense of pity or obligation…because I am kind of a lot…I’m sad and not that fun. One of my friends has had to straight up look me in the eye and say “Marie, I like hanging out with you” multiple times…and I am just now maybe starting to believe her.
9. I have huge trust issues because I’ve had my feelings disregarded or completely trampled on…intentionally and unintentionally…so many times over the past few years. There are maybe a handful of people that I allow past the “I’m fine” mask just out of pure self-preservation. Sometimes people fucking suck.
10. Tattoos. I love them and am thinking about a third.

So…there you have it…read…or don’t…

Jason and I got married in August, 2000. It was on our Honeymoon that I said…let’s have a baby! He asked to table that discussion until January…lol. Anna was born Nov 1, 2001…Seth July 23, 2003…and then Levi August 26, 2007.

I loved parenting with Jason. Watching our kids grow through the years was one of our biggest joys. Seeing their different personalities emerge…various interests come and go…supporting them in their endeavors…being there for them through the hard times…letting them know that we will always, always love them. I remember so many times holding Jason’s hand and sharing a secret smile with him as we watched our kids…those were the best.

And then 4 years ago…right around this time…we had to tell them that their Dad had terminal brain cancer and was going to die. And then 15 months later they watched their Dad take his last breath…and it has been the 4 of us since then…just trying to figure life out around this huge, gaping hole in our family.

Being Mom to Anna, Seth, and Levi has been the singular thing that has kept me going for the past 2.5 years. They are the reason I keep going while I struggle so badly to find where I fit in this world…when there are so very few people that see the “me” under the mask…when I feel like I’m disappearing without much hope for a better future. They are the ones who bring me joy…who “get it” when I get teary…who make sure I’m okay. And when I see glimpses of their Dad in them…that is the absolute best.

For Mother’s Dad in 2019 Jason bought me a gazebo. It wasn’t anything fancy…but I loved it…and it quickly became “my spot”. I spent many hours out there. It was just a peaceful oasis where I could shut my brain off and just “be”. The summers of 2020 and 2021 he spent time out there with me and it was also a place where we could visit with family and friends outside because of Covid. Well, pretty quickly after he died, my gazebo wore out. The roof ripped…the kids and I tried to rig up a new one…it didn’t really work. The frame got bent. And my oasis turned into a skeleton in my backyard.

Well, today we are waiting for my new gazebo to be delivered and the boys and I are going to assemble it. We are also reusing some pieces from the old one as trellis along my fence. I love how they understand how much it means to me and all come together for me. Their Dad would be so proud of them.

This week I’ve been working extra hard to keep my mental/emotional state on an even keel despite some “landmines”. Sunday was the Super Bowl and the first year that I was home alone with no plans. Do I care about the Super Bowl….no…but it was one of those things that we always did…even if we were just home watching with the kids and some snacks. This year Seth was working and Levi went to his girlfriend’s house. When Seth left the house he looked at me and said “You’re just staying home by yourself?” When I said “yup” I could tell he knew I was having a rough time, but I assured him I was fine. So…I was left with an empty house…and zero desire to watch the Super Bowl by myself…so I drank wine…put on some music…rearranged some furniture…and did some retail therapy online.

Monday I was glad to have some self-care already planned. Lunch with friends…which was fantastic…and then the usual Forced Fregien Family Food and Fun. Honestly, I think calling it “Forced” at this point is a lie. We all love it so much it doesn’t feel “Forced” at all. We tried three new recipes this week…Chicken Pad Thai, Chicken Fried Rice, and Brownies with Frosting. It was all edible, but nothing that will be made again…lol.

Yesterday I worked during the day and got to listen to all my coworkers talk about their Valentine’s Day plans…ouch. I had a good dinner with a friend after work. Then got home to see that Levi had set up the results of my Sunday retail therapy. I actually sat outside with my book for a bit last night and had my coffee on the deck this morning.

Today I really want to just hide out in my house and not see any people, but I have to work the closing shift…so I’m gearing myself up for all the inevitable Valentine’s Day questions/comments. What I really want is Jason sitting in that second chair on the deck…enjoying morning coffee with me…throwing the ball for Emmett…yelling at Linc to stop barking back at a dog that’s two blocks away…letting me warm up my chilly nose on his neck. Instead I’m just getting through another hard day without him.

2024 has been very emotional for me so far. My new job has been incredibly hard for me to adjust to. For the most part, I love the job itself. I like feeling like I am helping people. Sometimes it is very stressful, but for the most part it feels rewarding…like I did some good at the end of the day. I miss my people at Life Time though…and being around tennis. Nobody “gets me” at my new job. 

I’m constantly bombarded with conversations that rip at my emotions…not that anyone is trying to be hurtful towards me; they just don’t know what I’ve been through…not that I keep it a secret. One of my coworkers asked me last Friday night if my husband minds when I work until 10:30pm. This is someone I’ve worked with for over two months now. I said “No. He passed away 2 1/2 years ago. I don’t mind working evenings because it gives me something to do”. She said “Oh. I didn’t realize that. My husband gets up at 3:30am to go to work, so he goes to bed early. He doesn’t mind when I work evenings either”. I didn’t know what to say. Did she somehow think we are the same?? And I try to excuse it by thinking…well, she probably felt awkward and didn’t know what to say…but that doesn’t help me hurt less. Another one of my coworkers described me as “edgy” because I wear Doc Martens boots, drive a Bronco, and have tattoos. I wanted to tell her I’m just trying to get some of my “badass” back…but 20 year olds don’t quite get that.

I also promised myself that I was going to get all my finances in order this year. I was working with Jae…my finance guy…two years ago…trying to get everything in my name and then doing smart finance stuff with it so I have someone watching it for me and I know what’s going on with it. Well…I was close to getting it all done and just couldn’t do it anymore. Literally, ghosted Jae and everything has been just sitting half-done since. So…I reconnected with Jae…and bless his heart…he is so awesome. All he said was “It’s great to hear from you” and he was ready to jump back in. Never made me feel guilty…totally respected that I needed time…and he has been awesome in helping me talk through decisions that are very tough to make. And my emotions are all over the place. I’ve had to think about my future…what I want that to look like…when I would ideally want to retire. Go back through old papers trying to find statements and numbers. Ran across the folder from hospice and the folder from the funeral home…that put me in a tailspin. And all of this is supposed to feel like progress….like “getting something done”…but it feels like taking an eraser to Jason and our future we had planned together. What was “ours” is now just “mine”….and that feels horrible and lonely. And I know Jason is happy that he was able to leave the kids and I “secure”…but my heart still hurts.

On a good note. I was feeling like I was having a hard time connecting with the kids with all four of us having jobs and being pulled in different directions…so I instituted Forced Fregien Family Food and Fun every Monday night. Basically the kids take turns picking the menu and helping me cook…and then we play games. It has been the best thing ever. I look forward to it every week.

On another good note. It was warm enough to put the top down on the Bronco today…best investment in my mental health ever! As my friend Terri says, “You can’t frown when the top is down”…even if you have to wear your winter cap…and stop at Caribou for a coffee to warm up!

Merry Christmas everyone!

I had a bit of a rough day yesterday, but managed to pull everything together for a really good evening with the kids. We enjoyed our traditional fondue for dinner…complete with the annual hunt for another surge strip because two pots plugged into one NEVER works. We exchanged gifts and I was so relieved that they seemed to really like what I found for them this year.

And then we spent the rest of the evening playing games. Our favorite one right now is Everdell. It has a pretty steep learning curve, but once you play a game or two it is really fun….especially for teen+. Younger kids might have a hard time with it. I think Seth especially enjoys the strategy involved.

Some of my favorite moments with the kids are the times when I can see their Dad in them. Yesterday Anna was helping me put together the overnight French toast for today. It involves layering the bread in the pan and then pouring the egg mixture on the top. Instead of just pouring it on she got out a ladle and was very precisely spooning it on evenly. Sooo much something Jason would have done. I pointed it out to her and it sparked a little conversation. They are very quiet about their Dad a lot of the time, so I really treasure those moments when they will reminisce with me.

I hope you all enjoy time with loved ones today… Here’s a picture of Linc. He’s been jealous of all the attention Emmett has been getting….