When I had my craniotomy two years ago, a portion of my head needed to be shaved clean. Thankfully, my surgical team was very experienced and knew to leave a small section of hair in front of my ear. When my hair was down, you couldn’t even tell it had been shaved. That shaved area has been growing back ever since. At first it was fuzzy, then it was curly, and now it’s a unique texture and wave that I can’t straighten no matter how hard I try.
Very few people have seen what I looked like after surgery. This was taken shortly after the medical resident removed the tightly wound bandage that I wore for just shy of 48 hours:
To say I’ve neglected my tresses the past two years would be an understatement. Most of the time (now that it’s all long enough) it’s pulled back into a ponytail of sorts. I decided to go in for a healthy trim a few days ago and now you can hardly tell the difference between the “new” section and the old. Hooray for two years of growth!
I took the Shecklets on a bike ride (a.k.a. vestibular therapy) on this beautiful summer Saturday. (Next time we will take Jake with us. He went to his parents’ cabin to help with cleaning up from last week’s storm.)
One and a half years ago I was waking up “on the other side” of surgery with a new lease on life, but unable to see straight or walk without assistance. Tonight I’m walking a relatively straight line by myself and using this quiet time to reflect a little.
The doctors told me that I would see huge improvements in the first 6 months post-op with additional slower/smaller improvements possible over 1.5 – 2 years post-op. Most of the time, when people ask how I’m doing, my response is, “I’m doing really well. I’m grateful that I only have minimal side-effects to deal with.” And that’s the truth. I cannot be more happy with how well things have gone post-surgery.
There is a reality that I’m facing though. In reaching the 1.5 year post-op mark, I’m most likely now at what could be considered my “new normal.” I knew before surgery that I would come out of it SSD and there was the possibility of nerve damage. And let’s be honest here – I had BRAIN surgery. You don’t go through something like that and remain the same.
I have grieved losing my hearing in my right ear and feel like I have adjusted pretty well overall. But that doesn’t mean being SSD, having no sense of taste on half of my tongue, the constant ringing in my deaf ear (tinnitus,) and fighting fatigue aren’t frustrating. (They’re very frustrating in certain situations – I just try hard to hide that frustration.) There are days where I wish I didn’t have to tell my kids 137 times, “I can’t hear you,” or “Wrong side.” There are times when I wish I could thoroughly enjoy the flavor of a meal or dessert. I will likely always have to manage fatigue (due to physical exertion as well as sensory overload.) I have also found that my agitation threshold is much lower than it used to be – my brain can only take so much stimulation before it has had enough. The agitation and fatigue are the most challenging side-effects for me, but I’ve gotten much better at recognizing when they’re coming on and either remove myself to take a walk or a nap – depending on which one I’m dealing with. I’m extremely grateful for a supportive husband and kids who quickly learned that mom just needs breaks to recharge – like the opportunity I got tonight.
It’s snowing today and everything is covered in a fluffy blanket of powder. Typically, I wouldn’t venture out (other than to go to and from the bus stop) but my MRI was scheduled for 9 AM. Glad I didn’t have to drive far – though 4-wheel drive worked splendidly.
The scan took about an hour and I walked out with the disk of my images in hand.
I took a look at the scans when I got home. Obviously I’m not a radiologist, but I didn’t see the same tumor blob as on my last scan. The sinus infection I had during my first scan cleared up nicely as well – ha! (The right side of my head is on the left side of each of the images below.) I was able to see some of the titanium mesh that was screwed into my skull as well as what I believe is the fat plug they took from my belly to fill the space left by the tumor. I will, of course, wait for “official” word from my surgeon that things look ok, but for now, I can wait patiently and not feel anxious.
Today marks 1-year since my surgery at UCSD to remove the acoustic neuroma pushing on my brain. (I can’t believe I just wrote that!) So much has happened over the last 365 days. I give thanks to God every day for the gift of continued healing. We celebrated my ANniversary (Get it? AN = acoustic neuroma) by having dinner out. Then we came home for chocolate vinegar cake – Grandma Lois’ recipe.
Jake and I took some time this morning to reflect back on 1/23/18. Some of it I remember clearly and some I don’t. It’s probably a gift that the meds I was on also kept me from recalling a lot of what I experienced immediately post-op. There are times I think back to what has transpired over the last year and a half and shake my head in disbelief. Did I really go through all of that? Then the reality of my lost hearing, my scar, my hair that continues to grow back, my tongue that has lost its sense of taste on one side, all “prove” to me that yes, I did in fact experience all of this. And God has shown me His faithfulness throughout all of it. I am changed. I’m definitely not the same person I was before my surgery or even before my diagnosis. And that’s ok.
Next up – 1-year post-op MRI to (hopefully) confirm zero regrowth.
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.
