Nothing says fall like a bushel of apples from the orchard. Special thanks to my mother-in-law for bringing them to us!
I spent the morning slicing and dicing enough apples to fill my two largest pots to make applesauce. The house smells fantastic!
Any wagers on how long it will take before my efforts are completely consumed? I give it a few days.
While reading to the girls tonight, Shecklet #3 started asking me questions about my upcoming surgery. While I’m not about to go into the specific details of what the surgeons will have to do (I’m actually keeping some of those specifics from myself as well,) Jake and I have promised the kids to answer their questions honestly. After we talked about stitches, the reasons why it is good I’ll be “asleep” during surgery, balance, and the unknowns surrounding my recovery, Shecklet #3 asked if she could pretend to be the surgeon who takes out my tumor. She brushed my hair aside (which she said was her pretending to shave the spot where they’ll have to make the incision behind my ear,) gathered her surgical “tools” and ever so gently removed my tumor.
I have amazing kids. They continue to handle this entire scary situation with such poise and honesty. And I’ve been able to draw strength from that. I have told Shecklet #3 numerous times over the last month that if I have even a fraction of the courage that she has shown throughout her fingertip injury, I know I can get through what I’m facing in January.
T minus less than 2 months…
Not much has happened since my last tumor/surgery update. I’ve more or less been waiting for 11/1 to hit so I can confirm in-network status with my insurance one more time. The email I received back from Kris a week and a half ago (Kris is the UCSD patient navigator for Dr. Friedman,) contained two January surgery date options. The one I finally decided to move forward with is 1/23/18. It’s a Tuesday.
I spoke with Kris on the phone again this afternoon. She was able to give me a list of “to do’s” that I plan to start working on tomorrow:
Once my date is “official,” Jake and I can work on making plans/reservations for flights and lodging while we’re in California as well as begin to put together a plan for family and friends who have so graciously offered to help us on the home front while we’re away (and upon return.) I know I’ve said this before – I can’t believe this is my reality. I’m making plans to have surgery to remove a brain tumor. It’s so surreal.
It’s hard to think about scheduling major surgery when you really don’t feel “that” bad, and from the outside, people can’t tell that something is wrong. Most days I carry on like nothing is the matter and forget that I have an unwelcome guest inside my head. It probably helps that there is always plenty going on in, out, and around our house. But nights like tonight push reality in my face. I just clicked [send] on a pivotal email to the patient navigator for the Acoustic Neuroma Program at UCSD asking her about next steps.
So there it is…a decision.
After a month and a half of researching, going to appointments, and getting 3rd and 4th opinions, I’ve finally chosen a surgical team to evict Norman and will need to travel to San Diego to do so. There is one important hoop to clear before formally making things “official” and that involves the lovely matter of insurance. Both surgeons are currently in-network providers and the hospital and medical group they will bill through once they move to UCSD in November are also in-network. That said, I don’t anticipate any issues with them being in-network come 11/1. However, it seems I will still have a couple of weeks of slight uncertainty until I’ve confirmed the in-network status.
So perhaps this is more of an “almost decision.”
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.”
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.
I was able to talk with the second surgeon from California this afternoon. He told me similar information regarding saving my hearing – there is a low chance through the retrosigmoid approach but he’d be willing to try if that was my preference. When he asked whether I have headaches and migraines, (and I responded, yes) he again mentioned the increased risk with them becoming chronic with the retro approach and it would have to be something I’d have to weigh the pros and cons. His overall opinion was that I’d be a great candidate for translab surgery and he did not see an issue with the location of my jugular bulb. In his experience, he said that his translab patients have been his happiest patients.
With this most recent opinion, I finally feel confident in choosing a surgical approach. Now I plan to move on to selecting a surgical team/location and time. Deep breath, reality continues to set in…
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!
My dad asked to meet me yesterday afternoon so we settled on Hy-Vee for lunch (which is roughly in between us.) When I arrived, he handed me an envelope along with a beautiful quilt. In the envelope was a note he wrote explaining the gift I was now holding. Tears came to my eyes as I read his words and the words of his friend who made the quilt. I am so blessed to be supported by so many people – some whom I haven’t even had the privilege of meeting yet.
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