Tag: glioblastoma

UWEC Homecoming

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Feeling over-tired and emotional tonight. I had a really good time in Eau Claire with Emily and Tim. We went out for breakfast this morning and then headed over to the UW-Eau Claire Homecoming Game to watch the marching band. We got there early enough to chat with Anna and her friend Ashleigh beforehand.

The marching band also did a “tailgate show” before the game started that was really fun. Anna was in the back row so we were only able to catch glimpses of her now and again. We did manage to snag a picture as they were walking into the stadium.

We suffered through watching the first half of the football game…and then watched the Halftime Show. I was excited that we sat on the correct side of the field and I was able to pick Anna out pretty easily. She is the second trumpet from the left in this picture

I left to come home after the Halftime Show and then went to watch Levi play tennis.

He lost his first match and won his second match. He hadn’t played a match for a couple of months so he enjoyed competing again. He has really been working hard on improving his technique and game strategy. I love watching him play…although he told me he started playing bad when I started watching…sigh. He never complained about Jason watching him.

Jason would be so proud of how well our kids are doing. They obviously miss him. We talk about him…what he would’ve said or done in certain situations. I think in a lot of ways having their Dad here and seeing how sick he was…how he couldn’t do the things he loved to do with them anymore…how he was in pain…and then ultimately watching him die…that was extremely hard on them. Now they are feeling more settled…more secure in their day-to-day…they are able to look to the future. I am so proud of them. They bring me joy like nothing else can…just seeing them happy…doing the things they love…indescribable emotion. They are living like their Dad wanted them to.

Then there’s me. So broken. Even though I had fun in Eau Claire a huge part of me was just bleeding inside the whole time. Seeing all the other happy couples there. Every young college couple was Jason and I. Listening to conversations around us on the bleachers…a couple behind us who had met at UWEC and got married…just like we did. All these people not even realizing how lucky they are…blissfully going about their lives. By the time the Halftime Show was over I was ready to run out of there…by the time I got to my car tears were rolling down my cheeks. Jason would have loved to be there today seeing his Girl. I wanted him next to me…watching her…talking about how amazing she is.

Laughter

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I spent the evening with my sister Emily, my brother-in-law Tim, and Anna (my Baby Girl). Oh my gosh…it felt so good to spend the evening laughing with them…telling stories…hanging out. Emily is my baby sister. I was a Sophomore in high school when she was born. I think she was about four when Jason and I became “Ree and Jas”. This is my absolute favorite picture of the two of them. I knew right then he would be a really good Dad.

We are going to go watch the UW-Eau Claire football game tomorrow…and more importantly the marching band’s halftime show. It does my heart so much good to see how well Anna is doing here at UW-Eau Claire. She is really thriving…Jason would be so very proud of her…his Daddy’s girl.

Now is the time when I start to feel really sad and alone. Listening to music…writing…and wishing I had my person here with me. Nothing can take his place. I just keep looking for him…wishing he were here…

Coach

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When Jason was home and I would go to work I would keep track of people that I had seen…who had asked how he was doing…funny stories…anything that I could tell him when I got home. Today at work we had the girls 1AA Individual Tennis Section Tournament. Jason’s tennis coach from his “glory days” at Red Wing High School was there…the legendary Tom Gillman. Coach always meant a lot to Jason. He and his wife Theresa came to our wedding. I remember when Anna was born and we were down in Red Wing visiting Jason’s Mom and Dad we called Coach so he could come over and see her. Jason played in tennis tournaments in Red Wing for years. We saw them several times in the 15 months that Jason was sick.

Today when I saw Coach at work all I could think was “I have to remember to tell Jason that I saw Gillman today when I get home”. And then I would catch myself and remember. Ripped my heart out every time.

This afternoon I published the page I had been working on title “Jason’s Glioblastoma Journey”. You can check it out if you’d like to know more about Jason’s diagnosis, the treatments that he had, etc. I couldn’t write about his last 6 days yet…so it’s a work in progress.

Gotta Feel It To Heal It

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Gathering my thoughts for today…It’s Homecoming Week for Levi at school this week. Yesterday was College Day so he wore one of my UWEC sweatshirts that actually used to be Jason’s. Today he came upstairs and I asked him what the theme was for today. It was “Cancer Color” day…so he was wearing gray for brain cancer awareness. Tomorrow is Decade Day…he wants to wear Jason’s old tennis warmup from when he was in high school. So many feelings for me wrapped up in all of that…one of them anger that my kid even has a “cancer color” he wants to wear. When I was in high school I don’t think I knew a single person with cancer. He knows several that are very close to him, not even counting his Dad.

At work today someone came in that didn’t realize Jason had passed away. I hadn’t seen her since April. When I told her that he has been gone for 10 weeks today she said “well, at least he’s not suffering anymore”. I HATE it when people say that to me. I’ve tried to say it to myself a few times to make myself feel better and it just makes me feel awful. To me it’s like saying that Jason is somehow better off dead. Of course I don’t want him to be in pain, but I don’t think things are better in any way, shape, or form now.

On Wednesdays I have virtual group counseling. I was very skeptical of it at first…but it’s weird…now I look forward to it every week. It’s a great group of women all supporting each other where we’re at. Today, at the end of the 90 minutes the counselor said “you have to feel it to heal it”. I kind of thought it was cheesy when she said it and chuckled a little bit, but it has stuck with me for the few hours since. The “feeling” part has definitely been happening this week…maybe the “healing” won’t be far behind.

A lot of the “feeling” for me has come from working on a new page for this blog. I am going back in my memories and Jason’s Caring Bridge site and writing a page about Jason’s Glioblastoma Journey. Going through all of that is bringing up a lot of emotions…remembering how we were so hopeful in the beginning…and how that hope was slowly taken away…how I was trying so hard to just hold everything together and keep up a positive spirit when my world was falling apart before my very eyes…the love of my life slowly losing more and more of himself…me wanting to be able to do everything to take care of my family and take away their pain…and failing…so much hopelessness….helplessness…frustration.

The upcoming Thanksgiving and Christmas holidays keep getting mentioned this week as well….and I get teary-eyed every time. Honestly, if it were just me I would probably ignore them the best I could, but I know Jason would want the kids and I to celebrate…so not sure what we’re going to do yet…but it will be hard…always more hard.

Duluth!

License to Drive

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Today Seth got his driver’s license. A rather unexpected turn of events for me. He is our kid who got his permit when he turned 15 1/2…went out driving a few times…and then had zero interest in ever doing it again. He…and I…were feeling pressure from all sides because it “would make life so much easier if Seth could drive”…but he wasn’t ready and I stopped pressuring him. I knew he was under a lot of stress with his Dad being sick…and driving just wasn’t going to happen.

Well, at Jason’s Memorial Service a tennis friend of ours came up to me and offered to help Seth learn how to drive. Seth decided he was ready and went out with Jim a few times…maybe 7? Last night he sat down at the computer with his permit to schedule his driver’s test and discovered that there were either openings for today…or February…I was all set for him to schedule it for February and he surprised me by saying “oh well I’ll just do it tomorrow then”…like it’s no big deal. And he passed! So now instead of driving the boys back and forth to tennis…I can sit at home and worry about them out there driving…there’s always worry…now I know bad things can always happen.

I feel so many emotions. Overwhelming pride for my kid who put his mind to learning how to drive and totally nailed it. Worry about him being out on the road where there are so many unpredictable things that can happen. And of course sadness because Jason isn’t here to enjoy this proud moment with me. These moments of the kids’ where he is not here are just horrible. I hate that he is missing out on them, and that they don’t have their Dad. It’s not fair.

Missing the Happy Me

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Feeling all sorts of emotional tonight. Might just have to sit down and have a good cry. Really missing Jason and having a partner to share all the BS that life likes to throw at me all at once sometimes. Luckily, I have really good friends and family to help me and commiserate with me when the suck happens, but at the end of the day it is just me…making decisions, worrying, trying not to eff things up, worrying, making sure my kids are okay, worrying. Then I get myself so wound up and exhausted that everything seems ten times worst than it is…and my person who could unwind me is gone.

I feel whiney, pessimistic, stressed, frustrated, overwhelmed, stuck, etc…and I hate it….I hate feeling that way. I miss the days when I blissfully thought that bad things only happened to other people….those were good, ignorant, happy days. Now I feel like I’m just always waiting for the next bad thing to happen. I hate that way of living.

My house doesn’t feel like home anymore…not without Jason. Everywhere I look he should be there. All of his things are still here…just waiting. Yesterday I thought maybe if I start going through his things…try to make the house more “me” instead of “us” it will feel better. I got as far as sitting on my bed with a garbage bag and then just sat there paralyzed….couldn’t do it. I know…I know…give myself grace and time. I’m trying. I just want him back.

Home

Rattling around the house
That used to be our home
Now it’s just all full of
Stuff
I can’t seem to let go.

Plastic tennis trophies collecting dust
I want to throw away
But then feel
Panic
They stay in boxes on the floor

Your nightstand is just how you left it
Empty Tums bottles
Kleenex box
Junk
I can’t throw in the trash.

So much stuff
I’m caught between
Wanting to let
Go
And holding on tight.

I look around and see you
Even though you’re gone
Our house still holds its shape for you
My heart
Not ready to move on.

I long to feel at home again
But my home was always you
These walls were just a container
Our love
Was the glue.

I will stay strong love on this Earth
Living this fake life
Until I find my
Home
On the other side.

Hearing “I Love You”

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I had a hard time falling asleep last night. Usually I write or read until my eyes can’t stay open and then I’m out. Staying asleep is usually the hard part. Last night I just lay there thinking about how much I miss hearing Jason say “I love you”. For almost 21 years of marriage those were the last words I heard every night before I went to sleep…and the last 15 months when his memory was untrustworthy he would sometimes say it more than once. He would say “I love you” and then “I can’t remember if I said it or not yet”. I would just tell him he could tell me a million times and I wouldn’t mind.

Sometimes when he was having a rough day he would follow-up his “I love you” with “Thank you for taking care of me”. To which I would respond “You don’t have to thank me for that. You would do the same for me”.

When he was first diagnosed he would get really frustrated with himself when he couldn’t remember things…details about his doctor appointments and such. I told him not to worry about all that…the only thing you need to remember is that I love you and the kids love you. That’s it. And you know what? He never did forget that. He couldn’t keep track of anything else…day of the week…plans for the day…whether he had eaten or showered on a particular day…but love…that he remembered.

Those three words are powerful…don’t forget to use them.

Coincidence? I Think Not!

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Do you ever feel like certain people are put in your life at certain moments for a reason? I totally had that feeling today. First, I have to set the scene. For the past week I have been trying to get all the life insurance sh..stuff figured out. Jason had policies through three different companies…the one that was through Boston Scientific I think I have taken care of. Simple claim form I’m just wanting on my check. Then there’s the other ones…let’s call them Company A and Company B…they want me to meet with someone to go through the form…I don’t want to meet with someone…I just want to get this over with so I can pay my bills. Or just give me my husband back and you can keep your money.

So I have an appointment with the guy at Company A tomorrow. It’s where the majority of the policies are. I print the paperwork today and I am confused…seems like one of Jason’s policies is actually an annuity. I know nothing about this stuff. I’m asking around to a few people because I do not want to go into this meeting blind tomorrow. I don’t know the guy I’m meeting with…not sure that I really trust he has my best interests at heart…and I would just like to have some idea. Only answer that I’m really getting to my questions is “it all depends what kind of annuity it is”…Okay…I don’t know.

So I get in my car to drive home from work and decide to call the guy at Company B back because he has left a couple messages and I haven’t connected with him….his name is Jason. So I introduce myself to him. He immediately knows who I am and then starts talking to me and my first impression of this guy is…”oh my. He cannot even talk. What is wrong with him?” So suddenly he stops and says “okay. I have to give you some background because I’m struggling. My wife died of brain cancer 5 years ago. We have 6 kids. She was 43. I know exactly what you are going through right now. I’ve been there”. He gave me great advice on what to do with my policies. Straight up told me what my rights are and what I’m entitled to. By the time I pulled into my driveway we were crying together over the phone. He not only helped me with the policies at his company, but gave me the confidence I need to walk into my meeting at Company A tomorrow and feel like I know what I’m talking about…at least a little bit.

So hopefully by this time tomorrow I will have life insurance crossed off my list? Maybe?

October 2020

2 Months

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Feels like 2 hours, 2 days, 2 weeks, 2 years…somehow all at the same time. I had a really strange dream about him last night. To understand my dream you would have to know that Jason ALWAYS had chapstick in his pocket…and I never did. I was forever asking to use his…or kissing him after he put it on…maybe TMI…but this is my blog after all…lol. In my dream he had three chapsticks in his pocket…but one of them was the BAD chapstick…I snuck it away from him and then was trying to find somewhere in our closet to hide it because if he found it something BAD would happen. It was very unsettling to wake up after that…but at least I slept?

Today I met up with a friend of mine who specializes in turning t-shirts, sweatshirts, and other clothing into quilts. She is making me one out of Jason’s favorites…all those tennis t-shirts, a few shirts from trips, a marching band sweatshirt for our Anna. It felt like the right decision to give them to her…but there were a couple tears on the way home. It is hard to let go…even of these things I know I will get back in a way that I can actually use.

This is a bit of a bookend week for me. 2 months today and then Jason’s birthday is on Friday. I hate all the “firsts” without him. I’m already dreading the Holidays. If it weren’t for the kids I would just pretend they aren’t happening.

Shock

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Today I had my first appointment with the Grief Counselor who is available as part of the hospice program that Jason was in. I was not looking forward to it…actively dreading it…almost cancelled it numerous times. Grief counseling is not something I want to have to take advantage of. I don’t want to need it.

Here’s the thing though. I spend a lot of time feeling nothing how I anticipated I would feel…nothing how I think I should feel…nothing how I think other people think I should feel. I thought I would be spending all my time crying…not wanting to get out of bed…not able to function. People tell me I’m so strong because I’m back at work…taking care of my kids and dogs…functioning pretty well. I cry sometimes, but I can also go days without crying. They tell me “I don’t think I could do that”…which by the way makes me feel like shit because I feel like I am not feeling “bad enough”.

My takeaway from the Grief Counselor–I am only functioning well because I am in shock. And my shock has been compounded by the fact that we did at-home hospice…there were many aspects of his end-of-life care and death that were shocking and horrifying and have been impossible to put to the back of my mind. When I close my eyes at night those days are on repeat in my head…over and over and over.

Once she pointed it out to me and explained it to me it was a huge “ah ha moment”. After she left, I found this article published by the Hospice Foundation of America titled “The Shock of Loss“. Several parts of it really hit home for me:

People in shock often appear to be behaving normally without a lot of emotion because the news hasn’t fully sunk in yet.

Detached from the reality of the loss, you may be able to function pretty well at first. This can be confusing to the people around you, when they expect full-blown grief and suffering that you don’t yet feel.

Staying awake late at night obsessing or falling asleep only to wake suddenly in the middle of the night are both normal reactions.

Yes. That is it exactly.

Don’t get me wrong. I don’t regret our decision to do at-home hospice one iota. It was the least that I could do for Jason…to make sure his last days were comfortable and that he was surrounded by the people who loved him with his dogs looking over him.

I just wish I could stop re-living it in my head.

Emmett–worried about his Dad