Tag: Jacob

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Boxes checked

We found out back in November that our insurance would be changing 1/1/18.  Nothing like adding more excitement to the Norman situation! However, Jake’s employer was kind enough to give us the heads up so we could check to see if my doctors and the hospital would still be in-network after the change.  Thankfully, they are, but the 1/1 change meant that I’d have to wait another several weeks before requesting “official” approval from insurance that I can have surgery on 1/23.  (I’ve only been “penciled in” all this time.)  I called UCSD today to provide them with my updated information and let the patient navigator know that the university should be able to contact my insurance to request the approval.

More waiting, but we keep moving forward.  Plane tickets are purchased, I have all kinds of pre and post-op appointments scheduled, and once I know the date is “official,” we plan to book a VRBO property for the time we’ll be in CA.

T minus 20 days…

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Happy Pill

When we visited my aunt and uncle in Duluth this past fall, the kids saw that they had a happy pill that giggles when you squeeze it. Apparently Shecklet #3 talked to Jake after that trip and decided that she wanted to give me one for Christmas to take to San Diego. (She thought I needed to have something to cheer me up when I’m recovering.) They ordered one from Amazon and she did a great job at keeping her present a surprise. Love this kid’s big heart and thoughtfulness ❤️

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The Hobbit

Jake took the boys to see The Hobbit (as a play) at the Stages Theatre this morning. Both were very excited to see the book “live” in stage. Shecklet #2 was wondering if they would be using metal swords during the fight scenes.

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15 years and counting!

We took the kids out for dinner to celebrate our 15th anniversary. Some may wonder why, but we love spending time with them. Maybe we’ll do a round 2 of just us going out before my birthday rolls around next month.

Jake also surprised me with a crystal elephant since it’s our crystal anniversary.

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Life in stereo

Lately I’ve been paying attention to how things sound, where the sound is coming from, and the beauty of hearing in stereo.  It hit me hard a few days ago that there will be a days/occasions/every day events prior to my surgery that will be full of “lasts.”

  • The last time I hear the music in church in my right ear.
  • The last time I’ll hear my kids call for me and hear it in my right ear.
  • The last time I will be able to sit on either side of Jake and have a conversation using both my ears to listen to what is said.

It’s hard to say how I’ll react, but I’m guessing there will be many tears shed as I grieve the loss of 1/2 of one my 5 senses.

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California consult #1

I spoke with the first California surgeon (Dr. Friedman) yesterday afternoon (10/4.)  His experience, coupled with a balance of confidence and empathy, helped calm the anxiousness I was feeling from last week’s appointments.  He recommended the translab approach and put me at ease regarding the anatomy “challenges” that were brought up at Mayo.  He also has a care coordinator (who had an AN tumor removed 7 years ago) who guides you through the entire treatment if you choose to work with them – I’ve spoken with her twice and she followed up with me via email today just to see how I’m doing with processing everything.  Now I need to get the same documentation mailed to the 2nd doctor and wait for his call.  If he has a similar recommendation to Dr. Friedman, I will feel much more confident in making my surgical choice and can move on to figuring out a timeline for treatment.

We shared the news of my diagnosis with the kids two nights ago.  Their reactions were unique to each of them and I know they’re all processing things in their own way.  I continue to have good days and sad/mad/frustrated days – there’s no way around it, tumors suck.  I have a feeling that once I pick a doctor, location and set a date, things will really start to get “real.”  I’m bracing myself for another wave of anxiety, but continuing to pray I navigate it with ease.  I still need to be present as a wife and mom to five people who mean the world to me!

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Post Appointments Update

2nd email that I sent to those who have been praying for me following my diagnosis back in September.

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My ABR test (to evaluate the potential for saving my hearing through a retrosigmoid surgical approach) last Tuesday went fine.  Other than being loud and annoying, it was actually a little relaxing to be able to lay in the dark with my eyes closed and pray.  After the ABR test, I met with the U of M neurosurgeon and ENT surgeon.  They answered all of the questions I wanted to discuss (nothing new or earth-shattering was brought up or presented) and I left feeling relatively settled on choosing the translabyrinthine approach.

The appointment at Mayo started off with just the neurosurgeon.  We discussed my tumor, the two surgical approaches, and again how he thought the translab approach would be his recommendation due to the low chance at saving my hearing.  The ENT surgeon came in a while later and upon sitting down, said his recommendation was the retrosig approach.  I was shocked – not only because it seemed to catch the neurosurgeon just a bit off guard, but because of his reasons for his recommendation.  He said that I have a right-side dominant sigmoid sinus and a high-riding jugular bulb.  What does that mean?  Apparently, it makes the translab approach more difficult and can hinder the view of the tumor somewhat.  There is also the potential for developing a clot in the jugular bulb (albeit a very slim chance) which could lead to a stroke (again, a low chance, but still a chance.)  Going in to the appointment at Mayo I wasn’t interested in the retrosig approach for two main reasons – 1. it is more invasive, and 2. if you’re prone to headaches, the potential for them to be chronic after surgery is greater.  I have headaches almost daily (though not debilitating) and I hate the thought of living with chronic, painful ones.

I was able to keep my emotions in check until after our appointment ended.  After that, I let the tears flow as Jake and I drove home.  I’m frustrated, sad, and mad all at the same time.  I wish that the decision was clearer to me at this point. The thought of becoming single-side deaf (SSD) on the right side was hard enough for me to get comfortable with and now I have to consider a stroke risk on top of that.  I know a major lesson that God is teaching me through all of this is to trust Him completely.  Yes, the treatment choices I have to consider are life-altering, but my condition *is* treatable and I’m extremely grateful for that.  I know I will have a difficult recovery, but I’ll be given the opportunity to say “yes” to letting others help me and my family (which if you know me at all, is not easy for me to do – I’m much more comfortable being the one helping.) I’m being pushed out of my comfort zone to be vulnerable, ask for help, and allow others to support me.

So what’s next?  I plan to contact two surgeons in California who specialize in the surgical treatment of my tumor.  They review your scans and hearing tests and offer a phone consultation – for free.  I found out about them through a FB group I joined.  They are both well-respected in their field and from what I’ve read, people travel from all over the world to be treated by them.  I am praying my treatment choice will be clearer after these two consultations.

If you’ve hung on this long through my post, thank you.  And more importantly, thank you for your continued prayers and support.  I have had many more peaceful days than anxious ones and I know that continues to be because of your prayers.

With gratitude,

Veronica

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A punch to the gut

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

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SD Vacation 2017 – Day 8

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!

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SD Vacation 2017 – Day 7

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.