Anniversaries can be filled with joy and sadness. I’ve hit two in the last two weeks that are a mix of both. Joy that I’m a year out from the start of one of the hardest medical experiences I’ve ever faced, and a some sadness for what has changed as a result. Back on 8/21, it was one year since the MRI that picked up Norman growing inside my head. One year ago today, I saw Norman for the first time when I met with the doctors at the U of M. I posted the following comment on the AN Facebook group that became a great resource of information for me, including helping me find surgeons to contact for 3rd and 4th opinions.
Diagnosed with a 2.4cm AN 1 year ago today.
Surgery 7 1/2 months ago.
I don’t post here much, but want to take a minute to thank those who do. After my diagnosis you helped me feel like I wasn’t alone. As I discerned my treatment decision you helped me understand the possible outcomes of surgery – real life, no sugar coating. In the days leading up to my surgery and still now as I recover, you helped me see that life does go on and that it can be (and is) good. Stay strong, warriors!
There’s something about being able to dialogue with people who “get” what you’re going through. Their situation may not be exactly what yours is, but it’s close enough. They understand the emotions and the unknowns and some can offer hope when sharing where they are at today. I was able to “meet” two people through the AN page and corresponded with them after my surgery. They left notes letting me know they were thankful for my support during the time leading up to their surgeries. Looking back on those conversations now, I think they helped me just as much. It was a lot to process. Talking to them helped me face the reality of what I went through and keep pushing through my early recovery.
We spent the day celebrating 50 years at Nissedalen today. The weather was absolutely perfect and the lake water was warm enough for me to enjoy being in it. If you know me at all, that’s a pretty big deal! With summer (sort of) winding down, today was a great day to attempt the next major item on my recovery checklist – paddle boarding. Jake rented a couple of boards from a local shop and his cousins let us use their trucks to transport them to the lake. When the little kids weren’t using them, a few of the adults gave them a try. I was thrilled to not only get up without falling off the board, but keep my balance while paddling down the shoreline and back! Hooray for another recovery item checked off!
Group shot – 4 generations!
Grandma Lois & Papa Dale with many of their grandkids (and spouses) and great-grandkids!
One note about the coloring of the pictures. The smoke in the air from the fires out west was intense. These have been tweaked a bit just to tone down the yellow tones a bit – and they still look hazy!
Shecklet #2 also got up on skis today! Unfortunately, I don’t have a picture of him, but he wants to go again, so I’ll try to capture one next time.
The rest of the day’s photos can be found here: https://photos.app.goo.gl/kT3NcQ9JhhWmu5878
Usually I say that when referring to my kids and how fast they’re growing and changing. This time though, I’m saying it about me. Six months ago today, I was in the middle of a life-changing (life-saving) surgery. A lot has happened in a short amount of time and every day when I wake up, I’m thankful for the gift of continued recovery.
✅ walking
✅ normal vision
✅ driving
✅ biking
Next goal: paddle boarding
We celebrated with 6-month post-op ice cream cones tonight!
It’s been a while since I’ve written about my recovery. I continue to make gradual improvements in areas that most people would never notice. Things like balance and fatigue continue to be areas I hope will keep getting better – albeit slowly. One major victory to celebrate today though, is that I rode my bike! No balance problems, no major sensory issues (while riding,) and I was able to keep up with my 5-year-old who has become quite confident on her bike as well! We rode two miles tonight – down to the “big park” and back. Hooray for both of us!
I started this post two weeks ago, but never got around to publishing it. I’m now at the 10 week post-op mark, so I’ve had to make a few tweaks to my original post. (Not that you’d know that without me saying anything about it.)
8 weeks post-op today. 10 weeks post-op.
To be completely honest, I thought (hoped) my head would be pretty close to feeling “normal” by now. Maybe it was wishful thinking, I’m not sure. It’s not that I’m disappointed with my progress – far from it. I’m just tired of having to rely on others to get me from place to place, tired of feeling sensory overload when I leave my house, and tired of being tired so early in the evening. The not driving thing is driving me nuts – pun intended. It’s one thing to be at home for days, without leaving, by choice. It’s an entirely different feeling to be at home and know you can’t leave safely by yourself, driving a vehicle. (10 week note – I have ventured out behind the wheel, (sticking to short distances close to home,) but don’t feel ready to tackle the high traffic freeways quite yet. I’ll leave those to Jake.)
I realize there are several side effects that I’m extremely grateful I have not had to face: a CSF leak that could have meant a lumbar drain and/or second surgery, facial paralysis, my eye lid not closing on its own and needing a weight and/or lubricant to keep the eye from drying out, or swallowing difficulties. Those side effects are ones that many people on the AN Facebook page I am part of have to deal with. My daily frustrations involve balance and minor dizziness issues and the fact that my taste buds don’t work like they should. It’s unknown how long my balance issues will persist and my sense of taste may or may not return. For someone who really likes flavorful food, it is disappointing to take a bite of something and not have it taste like you know it should. (10 week note – I had a near fall over the weekend. I closed my eyes for a moment, turned my head suddenly and totally lost my balance. It was quite scary and I am grateful Jake was in the right place at the right time to catch me.)
Letting myself feel the feelings of frustration and impatience and then choosing to change my perspective to focus on the positive, here’s what I CAN and have been able to do. Three of my PT goals are being able to play volleyball, ride a bike and paddle board again. My physical therapist has had a PT student working with her the last several weeks and they have come up with challenging ways to work on my balance in order to get me back to doing those activities. Two weeks ago the PT student and I were able to do a little volleyball passing and setting in the hospital auditorium. I was pleasantly surprised at how muscle memory kicked in and I was able to track the ball without thinking. My head did get somewhat dizzy, but I didn’t fall over and was able to recover pretty well between passes. We’ve also worked on my goal of riding a two-wheeled bike by setting up situations where I pedal in an unsteady environment and also on a stationary bike. Shecklet #4 is really excited to ride her tag-a-long bike and I want to ride alongside her – she’s the driving force behind getting to my goal. Paddle boarding is difficult to simulate, but yesterday I did balance practice on a Bosu balance trainer and a balance rocker. It felt good to push myself.
It has become very apparent to me that I need to get out more. My brain is fairly comfortable within the confines of our house – no major issues with feeling dizzy or overwhelmed. Stepping outside or into a store is a different story. The lights, colors, sounds – they are all quite overwhelming. And while I manage as best I can, I’m pretty tired afterwards. A week ago, we spent time watching a basketball event at the kids’ school one day and I did some office work the next day. It took me several days to recover from those two outings – I needed longer naps and longer nights’ sleeps. When I mentioned my extreme fatigue to my PT, she told me about how I need cognitive rest during my recovery. My brain is exhausted after too much stimulation – sound and visual, and I need to make sure I “find a balance between resting, doing light activities and sleeping.” As a fellow AN warrior pointed out, it’s a “magic balance.” I’ve yet to find it, but I’m trying.
The emotion of what I went through two months 10 weeks ago still hits me from time to time. It almost doesn’t seem real. But then I feel the scar that makes a “C” around my right ear and the see one on my belly where they took fat to plug the hole where the tumor was and I realize just how real it is. I give thanks to God that I am alive.
Shecklet #3’s class worked with one of the advanced academics teachers today and completed a worksheet where the kids had to write about and illustrate bad news/good news. #3 continues to process what has happened in the last 6 months. I’m glad she can articulate her feelings so we can continue to talk about the situation and keep moving forward. 💗
I’m four and a half weeks post-surgery and people from our parish continue to pray for us, ask how we are doing, and offer to help/support us however they can. Recently, I’ve been able to personally tell a few of them how grateful I am that they take the time to check in with me. As Jake mentioned in a past post, if you look at me, you can’t even tell I’ve had surgery. Pre-surgery me had thought I’d be back doing most of what I did before by now, but post-surgery me now understands just how long retraining my brain is actually taking.
Jake and I are part of a ministry at the church that serves the 4th-6th graders by organizing social activities once a month. In addition, I was invited to join the Family Formation Core Team, which meets monthly to pray for the parishes using the Family Formation program, discuss the various ministries at the church that reach the elementary school age kids, (including the one we’re involved in,) and pray for each others’ intentions. I’ve been MIA for the last several meetings, but the Core team has been lifting me up in prayer. Today, this beautiful spiritual bouquet was delivered to our house. On the back of the flowers are the prayers and words of support from members of the Core team. Once again, I’m so humbled by the beautiful show of support for me and my family while I’m on the road to recovery. 💗
I had my first PT appointment on Friday and have my second one, tomorrow. The assessments I went through were comical. When you only have one balance nerve to keep you upright and you close your eyes while standing with one foot in front of the other, you fall over. When you close your eyes and turn your head from side to side, you fall over. When you try walking with your eyes closed, you can’t walk in a strait line and your physical therapist has to stop you before you run in to anything. Looking at my current abilities, I suppose there are two reactions I could have had – laugh or cry. I chose (and continue to choose) to laugh.
Based on my performance, you can probably guess what kind of exercises I was given to work on. Twice a day, I need to stand with my feet staggered, eyes closed, and move my head. I also have to turn 45 degrees and then back to my original position with my eyes closed. During testing, the therapist saw that my eyes make a slight jerky movement when they move from right to left. She gave me an eye exercise to work on that issue as well.
As part of the review of the appointment, my therapist asked how realistic I thought it would be for me to work on the exercises she assigned on a daily basis. My response was, “I’m extremely motivated.”
It’s hard to believe that these were taken three weeks ago.
Before I was wheeled into the OR, Jake whispered, “I love you” one last time into my right ear. Hearing those words in that moment gave me a last boost of courage to face what I knew was going to be a very rough 24-48 hours. When I woke up from surgery and looked at the clock on the wall, the entire wall fell to the side. This happened every time I opened my eyes. It was nauseating. Yesterday I walked three large laps at the mall with my mother-in-law and today I walked around our block on my own. It is amazing how quickly our brains can adapt to major change.
I’ve been reflecting back on the last three weeks a lot lately. So much has transpired in such a short amount of time. I had brain surgery and was discharged from the hospital three days later! That blows my mind. When I left the hospital, I was still dizzy, and not completely balanced, but mostly capable of walking on my own. That blows my mind. The prayers and emails, texts, and blog post comments continue. That blows my mind. (And also makes me smile.)
There have been a few people throughout this ordeal who have told Jake that they started praying for me after not having been to church or praying in years. Others have shared that reading about what my recovery has entailed has caused them to “reset” so to say and not take for granted the simple things in life that they are able to do without thinking twice – walking, picking something up off the floor, driving kids to and from. I’ve even heard that kids have told their parents they are praying for me (without any prompting.) <Insert my tears here.>
After I was told I had a brain tumor last fall, I began to pray for healing. It seemed like a logical prayer request. Little did I know I should have been more specific. God saw it fit to start healing areas in my life that I didn’t realize needed healing. It took facing Norman to bring me to a place where I could see that my perspective on certain relationships needed a major adjustment and helped me realize areas in my life that were broken. It has been hard – probably the hardest six months of my life, and I know He’s not done with me yet. But I’m grateful for the chance to see how God is using it all – my diagnosis, surgery, and recovery, in ways I never imagined.
We have tried to have a normal week as a family. It went pretty well aside from #4 and #2’s medical care needs. A while back I had a conversation with one of Veronica’s cousins about what kinds of things people post. Somewhere he had heard or decided that opening a bottle of ketchup is something that is post worthy, otherwise posting about normal life can get boring. I feel like I am at that point. We didn’t open any bottles of ketchup this week, but a number of normal things happened.
We have asked #1 and #2 to use their alarm clock rather than relying on us to get them up which has resulted in a much more orderly morning routine. #3 felt a little left out of the 6 am alarm, so #1 and #2 now wake her up when they are awoken. #2 is a little reluctant to rely on a machine to make sure he gets up on time. It was interesting to see him think about the risks of this change. We didn’t tell him that we would get him up if the alarm clock didn’t work. I am hoping he figures that out on his own. I have been happy with how both #1 and #2 have taken ownership of this. On Saturday #2 had a basketball tournament, and the rest of us went to a birthday party. It was good to be out and see friends. #3 went to another birthday party in the evening.
Somewhere along the way, I caught a nasty bug. So I have quarantined myself in the basement bedroom, and my Mom came back to the house to help with the kids. She has continued to help Veronica by taking her places for exercise and therapy and encouraging her. It has been a good change of pace for Veronica to have someone to talk to other than me.
Veronica told me this morning that she can tell a difference in her energy this week as compared to previous weeks. I am glad she is starting to recognize these improvements. It has been disheartening to not be able to share the joy with her of all of the progress that I have seen because she has been in the thick of it.
