glioblastoma – Page 29 – Love, Tennis, and Cancer

License to Drive

Posted on October 12, 2021 by mfregien6c146e4539

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

Posted on October 11, 2021 by mfregien6c146e4539

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”

Posted on October 10, 2021 by mfregien6c146e4539

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!

Posted on October 5, 2021 by mfregien6c146e4539

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?

2 Months

Posted on October 4, 2021 by mfregien6c146e4539

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

Posted on September 2, 2021 by mfregien6c146e4539

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.

Four Weeks Today

Posted on September 1, 2021 by mfregien6c146e4539

Today marks four weeks since Jason has been gone. Every day is harder…reality sinks in just a little more…tears are closer to the surface…getting out of bed a chore. My mornings are a struggle…hard to get going. I’m glad that I am back at work…if I get there and just need a hug to give me strength for my day I am always able to find someone to give me one. Then I am able to throw on my “Everything is Fine” mask to get through my day.

Getting home from work is a slap in the face again. Walking in the door and not seeing Jason sitting on the couch waiting for me…happy to see me home. No one to talk to about my day…except the dogs…they’re always happy to see me.

I try to keep up some semblance of normal at home for the boys…eating dinner together…running them to their activities…taking the dogs to the park to play. Then they go to their rooms to chill and I am alone…so I write…missing Jason next to me…wishing my feet were on his lap…or warming up under his thigh.

Someday maybe things will get easier, but that day is not today.

21 Year Anniversary

Posted on August 29, 2021 by mfregien6c146e4539

3 days ago I spent our 21st Wedding Anniversary without Jason. It was a very hard day for me. I woke up in the morning brutally sad from the first opening of my eyes….tears just would not stop rolling down my cheeks. I kept trying to pull myself together, but it was a struggle. Up until this point, every time I would see elderly couples together celebrating 60+ years together I would envision Jason and I like that…old and wrinkled and still very much in love…embracing the Grandma/Grandpa life. It hit very hard and hurts very deep the brutal truth that will never be us.

Last August for our 20th Anniversary we took a little getaway and stayed at a cabin on a lake in Alexandria. The pictures from that trip have been showing up on my Facebook memories. Jason was still doing pretty well back then health-wise. He had memory issues and confusion, but for the most part he was still “my Jason”. He hadn’t suffered from seizures yet or had his second brain surgery…the two things that he really never recovered from.

I knew deep down that there was a very real possibility that Jason and I would not spend another anniversary together. It was very hard for me to live in the moment and enjoy every second with that knowledge looming over my head, but for the most part I did and we made a lot of good memories that trip…fished…walked through Downtown Alexandria…went to a winery…went out to eat at a place that had live music outside on the patio.

This is one of my favorite pictures of us…while he was sick anyway…and it is from that trip.

Why “Love, Tennis, and Cancer”?

Posted on August 28, 2021August 29, 2021 by mfregien6c146e4539

When Jason was battling Glioblastoma I faithfully kept up his Caring Bridge site. Although I had never written much of anything in the past, I found that many people enjoyed my writing style…loved being able to keep up with our journey…learn more about us through my posts…and that the writing was therapeutic for me. Now I hope that with this blog I can continue to reflect on the past…mourn in the present…and maybe find some hope for the future.

Love was the building block upon which Jason and I built our whole entire lives around. We loved each other and our children with everything we had. I’m not sure yet what my life looks like without the love of my life in it. It is hard to look forward to a future of loneliness. I am grateful that he left me with three beautiful children to live for.

Tennis has been a big part of our lives from the very beginning. It is what brought Jason to UW-Eau Claire where we met. Jason played tennis for many, many years and we made numerous fantastic friends through tennis. Many of our trips and great memories are tennis-related. Our children have all been involved in tennis…playing and coaching. I work at a local fitness club in the Tennis Center and have a great support system there.

Cancer is a word that you never, ever want to hear in relation to someone you love. Glioblastoma in particular is not something I would wish upon my worst enemy. It is a brutal disease….stealing away bits and pieces of its victim little by little, day by day. For 15 months cancer consumed our whole entire lives…and now our lives are irreparable changed because of it.