Here is what has been growing inside my head for an unknown amount of time. If you use the average growth rate of 1 to 2 mm/year, it is possible that Norman, my acoustic neuroma, has been present for 12-24 years. Looking at these pictures still makes me shake my head in disbelief.
I’m 20 days out from a day I will never forget. It’s also the day before two days of appointments that will hopefully provide more information regarding my next steps.
This is a version of an email I sent to family and friends after I was referred to doctors at the U of M after having an MRI back in August.
Stay tuned for more on the things God has already taught me this past month.
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I had some shocking news hit me on 9/5 and am writing to humbly ask for your prayers.
First, a little history just for context. I’ve been struggling with hearing loss coupled with pain/pressure in my right ear for almost a year and have been seen by several different health professionals since last December. This past spring, the ENT PA-C that I saw recommended having an MRI to rule in/out something called an acoustic neuroma. At the time I didn’t see the need for something like that because they are relatively rare and my symptoms didn’t seem “that” bad. Fast forward to a few weeks ago and I was fighting another sinus infection and the same pain/pressure in my right ear. I decided to make the appointment for the MRI and added a CT scan as well (because of the sinus problem.)
The results came back the same day (8/21) – substantial sinus infection (which we treated with antibiotics) and the appearance of an acoustic neuroma. (They did not tell me the size over the phone and I didn’t think to ask.) The PA referred me to a specialist at the University of Minnesota and I was able to get an appointment scheduled on 9/5. My MRI scan results were not good. I could see the acoustic neuroma right away when the doctor pulled up the image and emotions instantly overwhelmed me. The acoustic neuroma is about 25mm, which is on the border of what they consider medium/large. We have no idea how long it has been growing, though the average growth rate is 1-2mm/year. I’m still trying to wrap my mind around the fact that I have a tumor in my head. (Silver lining is that it’s not cancerous and “usually” slow growing. Though care needs to be taken because as it grows, it pushes on the brain and eventually brain stem and can cause additional issues.)
Surgery is the recommended treatment due to my “young” age, good health, and the size of the tumor. There are side effects of the surgery that brought me to tears a second time and continue to do so – complete hearing loss in my right ear is absolute if one surgical approach is taken and 2/3 likely if a different one is used. The impact on the facial nerve is unknown until surgery is completed, though I’m told the surgeon at the U is meticulous and does everything he can to provide the “best outcome possible.” Time in the hospital can range from 3-7 days after the initial 24 hours or so in ICU. Then it’s recovery at home – at least 6 weeks without lifting heaving items (including kids) so as to not cause cerebral spinal fluid leaks, exercises and an occasional check-in appointment, and I won’t be able to drive until my balance stabilizes (timeline for that is unknown.) Needless to say, it was an extremely overwhelming afternoon. Thankfully, Jake was there.
As the news is still fresh and there is more information to gather, we have not made a decision on the treatment direction or timeline. The doctor suggested we go home, talk, and call for a follow-up appointment with her and the neurosurgeon. That second appointment at the U is now scheduled for 9/26 and I have an appointment at Mayo Clinic on 9/27 to get a second opinion on treatment recommendations. Taking in and processing all of this information is extremely overwhelming, so I’m asking for prayers for clarity, for the right decision to be made, and for a sense of peace & courage. I’ve also worked up the courage to pray for a miracle – complete healing without surgical intervention.
We have not shared any of this information with our kids and don’t plan to do so until we have a clear idea of treatment. I am very open to talking about it though, please feel free to ask questions or check in.
Thank you in advance for your prayers!
Veronica
P.S. If you want to know more about what an acoustic neuroma is, you can check www.anausa.org or http://www.mayoclinic.org/diseases-conditions/acoustic-neuroma/home/ovc-20339659
I came home from picking up Shecklet #4 from preschool and someone had hung a red bag on the front door handle. (Going off a hunch, I did figure out who left me the thoughtful gift. She’s a sneaky one!) Inside the bag was a little box containing the Divine Mercy image. I have been repeating the phrase, “Jesus, I trust in You,” these past two weeks when my nerves or mind are spinning out of control. Now I also have the visual of Jesus’ mercy on my kitchen window sill. I am grateful for the way I have been able to see God’s comfort and consoling during this time of waiting and pray it continues.
Part two of the drive home. We left Mitchell and went to Sioux Falls to check out the Butterfly Gardens and Aquarium.
We grabbed a quick lunch and then drove to Marion to visit some of my extended family. It had been four years since our last trip to see them – Shecklet #4 was only a few months old and my cousin Josh was getting ready for his deployment. It was really good to spend time catching up with family. Hopefully it won’t be another four years until we can do it again.
Gassed up in Sioux Falls and heading home!
Loaded up and ready to make the two day trip back home!
Since we weren’t rushing to get to Mitchell, we drove back through the Badlands. This time we stopped and hiked on a different trail. Shecklets 1, 2, & 3 went with me on over half of the Notch Trail. We went as far as climbing the ladder before turning around. They’re not joking when they recommend hiking boots, which is part of the reason we turned back after reaching the top of the ladder.
On to Mitchell where we had dinner at The Depot, checked in to our hotel, watched the last half of Shrek, and went to bed.
Bear County was the first stop of many today. As we drove through the park we saw elk, mountain goats, bison, bobcats, wolves, and of course, bears.
After driving through the park, we walked the 1/4 mile trail and got to see badgers, a porcupine, lynx, skunk, groundhog, beavers and bear cubs. The cubs were my favorite – so mischievous and playful.
Lunch was at the Firehouse Brewery in downtown Rapid City.
We picked up a few bottles of Mythical Beast wine at the Firehouse Winery nextdoor before heading to our next tourist stop…Dinosaur Park.
And then a longer stop at Storybook Island. The Shecklets enjoyed running around and checking out all of the character statues and posing for pictures with many of them.
The rest of the day was spent at the water park connected to our hotel. Four and a half + hours of running around, climbing steps and flying down water slides makes for one tired bunch of Shecklets. (Each of then went down the red and blue toilet bowl at least one time with Jake – it was pretty amusing to watch!) Goodnight!
Two stops were on today’s itinerary- Reptile Gardens and Fort Hays (for a chuckwagon dinner and show.)
Reptile Gardens was full of so many animals we were busy for hours. We took in the three shows they offer- the bird, alligator, and snake shows. Each one had engaging presenters who informed and entertained the audiences. In between the shows, we toured the grounds to see the world’s largest collection of reptiles (according to the Guinness Book of World Records a few years ago.)
After leaving Reptile Gardens, we headed up the hill to Fort Hays.
There we found old town shops including one where they make rope and another where they make tin plates (like the ones we used for dinner.) The Shecklets were able to help make a three-strand rope that is strong enough to hold 2 tons before giving way.
Watching the tin plates being made.
For the second day in a row, we took shelter from the rain/hail – this time in our suburban. It didn’t last long and thankfully the hail was only pea-sized. When the storm passed, we saw a full rainbow.
At 6:15 pm the doors to the chuckwagon dinner room opened and we found our seats.
The 400 in attendance were all served dinner in 22 minutes! The meal was eaten from a tin plate (made in the tin shop.) We each received a baked potato (semi-flattened so it didn’t roll around,) baked beans, meat (chicken or BBQ brisket), applesauce, and then on top of a sheet of wax paper, a biscuit and spice cake. Lemonade was served in a tin cup as well. The food was tasty and the musical entertainment by The Wranglers was great!
Black Hills Caverns was our first stop today. We went on the Adventure Tour – an hour+ tour through limestone caves. Our tour guide, Cooper, was awesome! He was very knowledgeable and answered all of the kids’ questions. Jake and I agreed with the ratings of the tour – family friendly and fun!
Our lunch spot was at an overlook of the dam reservoir. With our appetites tamed (at least for a bit) we drove by Crazy Horse.
And then through Custer State Park where we saw where the buffalo roam. (Along with the donkeys.)
As we wove through and eventually out of Custer, we stopped to see the Four Faces at several spots along the way.
Upon arriving at Mount Rushmore, a storm approached.
We made it about halfway to the monument viewing spot before we turned around to take shelter in the gift shop for a while.
When the rain subsided, we went to the cafe for dinner. By the time we finished, the rain had completely stopped, so we ventured back to the main viewing area to take the obligatory photos in front of the presidents and went on a walk around the monument grounds for different views of the Four Faces.
And one final photo from the nighttime program that we hung around for tonight.
Heading to the Badlands! (If you ask Shecklet #4 what you do there she will tell you, “It’s where you fight!”)
Quick stop to check out some prairie dogs.
Around 10:30am we entered the Badlands National Park. We stopped and did a little hiking. Shecklet #2 is already planning a return trip to do some more hiking!
Next up…Wall Drug!
On the way to our hotel outside Rapid City, all four Shecklets managed to talk, sing, or read out loud at the same time. 😬
We made it to our crash pad for the next 4 nights about 5:30. We’re all happy to be here!
A full day means a good night’s sleep.
When the hotel breakfast is a bust (things just weren’t working in the continental breakfast kitchen) you hit up Hardee’s for raisin and cinnamon biscuits.
The church we attended for 8:30 mass, Holy Family Church, is a parish that uses the Family Formation program that originated in our home parish. I talked with Fr. Stevens after mass and he spoke of the importance of parents being the primary educators of the faith, which is why he likes the Family Formation program. He is moving to FL this week and I told him he should bring the program to FL. 🙂
We all agreed that we enjoyed the mass – the kids thought the pipe organ in the choir loft was pretty cool. During the homily, Fr. Stevens talked about not living life in fear – not to fear things external to us and not to be fearful internally. He encouraged people to go to confession at least 4 times a year (once in each season is an easy way to remember) and how going regularly can help combat fear.
We lit 4 candles for our intentions – for our family, for a safe and fun trip this week, for Michelle, Kari, Leo, and Angela, and for the families of Holy Family participating in the Family Formation program.
The crew helped re-pack the suburban and then we stopped at Cabela’s to check out the live fish and stuffed animals.
Then we headed to the big attraction of the day – The Corn Palace.
Pit stop at the Lewis and Clark rest stop by Chamberlain, SD.
On our way to Murdo, SD. Lots of hay bales! I’m loving the blue sky and white, fluffy clouds.
Just finished dinner at the Rusty Spur. Now it’s time to swim!
