Tag: glioblastoma

I wasn’t going to write about this, but then I thought…you put everything else out on your blog why not this? Speak your truth. One of my favorite quotes is by F. Scott Fitzgerald. He said “You don’t write because you want to say something, you write because you have something to say”. So here it is. I’m not looking for a whole bunch of comments…just putting out there what goes through my messed up mind and shattered heart.

As many of you know Anna loves plants. She has way more plants stuffed in her dorm room than the majority of people have in their whole house. I have absolutely no doubt. When she came home for Spring Break she left some of them here so that she doesn’t have so many to transport when she comes home for the summer. I don’t have any houseplants of my own. I am not good at them. When she left on Sunday I said something along the lines of “Oh boy you’re trusting me to keep all these plants alive” and then the next thought in my mind that I stopped the second before it fell out of my mouth was “I couldn’t even keep your Dad alive how can you trust me with your plants?”

And this is where I don’t need your comments because I know that Jason getting cancer wasn’t my fault and I made the best decisions I could at the time with the information I had. I know that….but also there’s part of me that doesn’t believe that. I didn’t love him enough. I didn’t ask the right questions. I should have gotten him in the trial instead of starting Avastin. I should have taken him down to Mayo. I should have quit working and spent more time with him. I just wasn’t enough. Nothing I did was enough. And he paid the price.

And that feeling of not being enough continues. Now I somehow have to be enough for my kids. I can’t fail another person in my family. And I know that I have help…and am very grateful for it…but at the end of the day I am their Mom…the only parent they have left. What other people see as strength….yeah…that’s actually fear…fear of letting them down…fear of messing up their lives more than losing their Dad already has. That’s what gets me out of bed in the morning…love for my kids and a whole shit-ton of fear.

Sometimes I try to remember the last time I was really happy. I think it was two years ago, right around this time. Maybe an odd time to feel happy as the world was freaking out about Covid. Gyms were shut down, so I was home on furlough. Jason was working from home. The kids were schooling from home. It was a fearful time for a lot of people, but I just felt secure in my bubble where nothing bad could possibly happen to my family. We played games together. Did puzzles together. Went for walks. I loved that Jason was working at home and I could pop down the hall and give him a quick kiss whenever I wanted to. I can still picture him sitting there and the smile he would give me when I walked in the room.

And then my bubble burst…and it wasn’t Covid that burst it, but cancer. I want my happy, floating in a bubble, days back.

Spring is supposed to be a time of hope, rebirth, renewal, all that positive crap. I feel none of it. I look outside and literally all I see is months worth of dog poop that was hidden under the snow and a list of other jobs to get done. In the past, Jason and I would have tackled it all together…just like we did everything. The two of us were a team. We would spend the time talking about our plans for the yard or house…our dreams…the kids…everything and nothing. Now, I hired a service to come de-poop my yard…and well…I’ll get to the rest of it.

Today Jason’s Mom and Dad came up for a visit. They wanted to see the kids while they are home on Spring Break and also check out all the work we’ve been doing in the inside of the house the past couple months. We were also surprised to find out that the City installed Jason’s bench at Scott Park (corner of 140th and Galaxie) in Apple Valley. The kids and I, Jan and Kent, and Jeremy and Cheryl all went to check it out. Thank you to Jeremy and Cheryl for tirelessly working (fighting) with the City to get the bench installed. It is perfect and I’m so glad that the timing worked out for us all to go see it today.

If you are in the area and feel so inclined as to stop by Jason’s bench, I would really like it if you would take a picture and send it to me.

All days are hard. Some days so much harder than others. This was one of those days. Rough around the edges…cranky…and teary all day at work. Feeling overwhelmed more than usual. Crying in the car on the way home because all I want is for Jason to be here to listen to me and give me a hug…and he’s not.

Last night we were talking about our summer family vacation. I think that’s what triggered the rough day today. Family vacation…how can we have family vacation without Jason? Last August we left the day after his funeral to go to the Southern Western Open in Cincinnati…a trip we were supposed to take with Jason…his “bucket list” trip. The kids and I had fun, but I think we were all so shell-shocked we really didn’t even know what reality was yet. The boys want to go again this year, Anna’s less excited about watching days of tennis. We’ll probably have to figure out some sort of balance there. And I want to go and spend quality time with our kids and have fun with them…believe me I do…but I so badly want to share all those moments with Jason there with us.

Today, I was chatting with a guy at work. Super nice guy. He comes in a few times a week, but this is the first time I’ve chatted with him for any length of time. Turns out he is leaving with his family to go on a cruise over Spring Break. So we got talking about cruises, and he said like 4 times in the conversation “going on a cruise is something you have to do at least once before you die”. Poor guy had no clue that he was twisting a knife into my heart every time he said that. One more thing Jason missed out on.

I haven’t been able to write. Not that I don’t have time. I’m definitely not “too busy”. I just can’t. I sit down at my laptop….stare at the screen…and…nothing. In the almost two years since Jason’s diagnosis writing has always been my outlet…Caring Bridge…poetry…this blog…journaling. Even when I couldn’t write on screen or paper I was “writing” in my head.

So tonight I’m forcing myself to write. Writing about not writing. Trying to figure out why the words aren’t there for me. All I’m coming up with is that the pain feels so deep, and big, and overwhelming…my words just can’t do it justice. I feel like the Titanic. What I thought was pain before was really only the tip of the iceberg. Now I know that was just a small fraction of all the pain lurking beneath the surface…a pain I don’t know how I’m going to survive…my hull will be ripped to shreds and I will sink into the icy cold water.

So right now I’m hiding from that pain…even from myself. I’ve been trying to do “normal” things. I went to a Journey concert last week with some friends. It was too much…everything…too many people…too many couples…too many love songs. I dusted off my tennis racquet and played tennis a few times. That felt good…I know Jason would like that I’m playing (or trying to play) again…but also made me sad that Jason isn’t out there playing anymore. It doesn’t feel right to be enjoying “his thing” when he can’t…I’m trying.

Our kids are all home this week. Spring break at all three of their schools. It feels good to have them all under our roof. I keep thinking about how excited Jason would get last year when he knew Anna would be coming home. He could never remember what exact day I was picking her up, so he would keep asking “when are you going to get Anna?”

Yesterday the boys and I painted our kitchen and dining room. I will never paint a kitchen again…ever. I think Jason would be proud of us for getting it done…while at the same time shaking his head at all the spots that were deemed “good enough”. He’s the perfectionist…I quickly reach the “good enough” stage. The finished product is not perfect…but it is much more “me” than the wallpaper the house came with 15 years ago when we bought it.

And when I’m alone and I can let my “I’m fine” mask fall…when my kids aren’t looking…when I’m not pretending…all I feel is pain…loneliness…and exhaustion. Pain for me….for Jason…our kids. Loneliness…not for people…but just for Jason…the only one I want to do everything and nothing with. Exhaustion…knowing that I have to somehow keep on going…get up for another day tomorrow…and tomorrow…and tomorrow…and tomorrow…

I’ve been quiet this week I know….pulling into myself. Spinning in my head instead of processing through writing. Part of it is that I started dragging myself out of bed early in the mornings and getting a workout in before I go to work. By the time 8pm rolls around I am fighting to keep my eyes open, but I do feel better throughout the day…especially since I have been working on eating healthier as well. Trying to take control over some aspect of my life when everything else feels out of control. Unfortunately, getting tired earlier in the evening has not translated to sleeping better at night.

I’ve been trying to get in to see a counselor. My grief group has been great, but I’m feeling like I could use something more than that. Unfortunately, I haven’t had any success in getting an appointment. The first place I called never got back to me and the second place said they aren’t accepting new patients right now. Super frustrating….and really hard to keep myself making those calls…just another item on the list of “Shit I Don’t Want to Do”.

Levi and I got to have dinner with Anna and her friend Olivia tonight. Their band is touring this week…playing at a few high schools in the Twin Cities area. I picked them up from their hotel and took them to Red Robin. Olivia is from a really small town in Wisconsin and was excited to go there. It was nice getting to see Anna. She has Spring Break in a few weeks and will be home again.

Tomorrow I get to pick up my ring from the jeweler. I am looking forward to having it back on my finger!

Ugh…my workout backfired on me today. I did some intervals on my treadmill and then even gloved up and hit the bag for awhile…like 5 minutes…cuz holy shit I’m out of shape…but I was trying to find my inner bad ass again. I was all sweaty and red-faced enjoying my exercise endorphins and then went upstairs and for half a second was expecting Jason to be up there. And of course he wasn’t and suddenly I’m sitting on the floor crying with the dogs all over me trying to figure out what the hell is wrong with their Mom now.

Jason and I had this banter we would have done. I would have come upstairs. He would have said, “Have a good workout Babe?”. I would’ve said yes and then tried to get close to him and give him a kiss. At which point he would tell me how sweaty and stinky I was and I would say, “But sweat is sexy”. I always thought he was sexy when he was out sweating on the tennis court after all!

Levi and I are gong out for breakfast today. Hopefully that will pick my mood back up a bit again.

I’m still smiling today…even though I had a really long day at work. Work friends and member friends stopped by to chat with me today and see my tattoo. Every time I look down it makes me teary and also brightens my day at the same time. It doesn’t feel great when my sleeve rubs it, but other than that it doesn’t hurt and looks great.

My brain has been replaying good memories for me instead of the “hospice days loop”…such a relief…too many days of that and I felt like I was standing on the rim of a very black hole…and jumping in was not as scary as it should have been. The black hole is very much still there, but I don’t feel like I’m flirting with the edge quite so much.

Today I was thinking about the only time in our 25 years together that Jason and I really ever spent any time apart. It was the summer in between our Sophomore and Junior years of college. Jason had a temp job in Red Wing working at a factory cutting up fruits and vegetables. It was a miserable job…like 40 degrees in there…he had to dress warm…boots and everything that summer. I was working at Menards in Wausau and only had every other weekend off. So we took turns visiting each other every other weekend. Those two weeks in between sure were long. We spent a lot of time at night after our families went to bed meeting in chat rooms using good ole dial-up internet.

That was the summer the movie “Armageddon” came out. One of the weekends that Jason came to visit me he bought the soundtrack of that movie for me. In fact, I just found it in our basement the other day…one of the few CD’s we had saved. Our wedding song “I Don’t Wanna Miss a Thing” by Aerosmith was from that movie. And that was also the song that we danced to for the last time at Jeremy and Cheryl’s wedding 11 days before he died. Memories I don’t ever want to forget.

Tonight I’m truly smiling more than I have for a long while. I worked until Noon today and then ran some “errands”. First, I went to the UPS Store to get a beneficiary form notarized and overnighted to Vanguard. The first step in getting Jason’s 401k transferred over to me. This is the last of the “big accounts” I need to take care of. Yes, there are still things in his name…but this is the last big piece that really matters. After this is complete I can sit down with my finance guy and look at things “big picture” and secure my financial future. Not real fun stuff…at least for me…but it is certainly peace of mind.

Second…you may remember that months back I snagged the solitaire on my wedding ring on something…the diamond fell out…panic ensued…and thankfully I ended up finding it in my car. Since then I have been wearing Jason’s wedding band. Today, I went to a local jeweler thinking that I would talk to somebody about designing a new ring out of the two bands together. Well, I got a sick feeling in my stomach when I thought about changing my ring and decided to just get it fixed…because when it comes down to it what I really want is to wear MY ring again…the one BOTH of us picked out. So next week my ring should be ready for me to wear again. They are going to put a completely new crown on it and set it a bit lower so that it doesn’t stick up so much and snag everything…but I can’t even begin to tell you how happy I feel to know that it will soon be back on my finger where it belongs.

Third…I got a tattoo. Since Jason passed I have had the idea in my head that I wanted to get his handwriting on my forearm…where all I have to do is look down and know that I am still loved by him forever. It’s my first tattoo, so it took me a bit to get up the nerve…but damn…I love it so much. Arthur, the tattoo artist, was so nice and kind. He was covered in a zillion and one tattoos, but this guy cares so much about his craft and was 100% dedicated to making sure my tattoo is exactly how I want it…from the size to the exact spot it is on my arm. He chatted with me and let me talk about Jason….completely listening…not prying at all…just letting me know he cared about my story and what this tattoo means to me. I got all teary is his chair and he just let me be and was just so kind. Jason is not a fan of tattoos, but I feel like he’s okay with this one.

To top off my day I had dinner with two of my really good widow friends. We were all smiling and laughing so hard together. And it just felt GOOD. We talk so much about our husbands that I feel like I know theirs and I’m sure they feel like they know my Jason. My friendship with them has truly been a light in the darkness these past 7 months.

Hopefully, my smiles will bring me a peaceful night’s sleep and will continue into my day tomorrow.