My primary doc messaged me today and shared that my tumor has not changed in size since my initial scan! This news is a huge relief since I’ve been feeling an increase in pain/pressure and a decrease in my hearing the last few days. At least I know those symptoms aren’t a result of Norman’s growth.
Part of my pre-op prep involves another MRI scan – with and without contrast. My initial scan from August would be 5 months old by the time I have my surgery, and the doctors require a scan that is no older than 4 months. The order from California was faxed to my clinic this morning and the radiology scheduler was able to book an appointment for me this evening. Once I have a CD of my scans, I’ll be able to upload them to the UC San Diego portal for the doctors to review. I have noticed the presence of Norman more these last couple of weeks and am praying there has not been an increase in growth over the last four months.
I’m not big on pictures of myself. Never have been (as an adult, at least.) I’m pretty self-conscious, and thus, tend to shy away from having them taken. I know of at least one article out there on the interwebs that talks about how it’s important for you to take pictures with your kids and for them to see pictures of you as an adult. Not just formal family pictures, but everyday, no make-up on, real life pictures. As I approach my surgery date, I’m trying to be more open to that – though I wish that wasn’t the reason for my change in perspective. I have no idea what the impact to my facial nerve is going to be post-surgery. As I look back on pictures from the last several years, I can see that when I smile, my right eye doesn’t close the same way as my left. It’s not something that anyone else would likely notice, but I do. My hunch is that Norman is to blame.
I continue to pray that the only side-effect from the removal of the unwelcome guest in my head will be SSD and nothing else long-term. I’m trying to keep my anxiety over the unknown that I cannot control, in check. On a related note to that, the number of people who continue to come up to me and tell me they’re praying for me and my family continues to blow me away. And I know it’s people’s prayers that are getting me through this time of waiting. How appropriate that we’ve now entered the season of Advent.
The reason for today’s selfie is to document my current ability to smile as well as my new haircut. I had coffee with a friend this morning and afterwards, instead of going home to pick up the house, I decided to shorten my locks. I realized last week that when they shave the section of my head for the incision, my current haircut would look really lop-sided due to the layering I had. I had about 4 inches chopped off and now it will hopefully hide the incision a bit better next month.
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…
The two surgeons who I plan to have remove my tumor in January were featured in a press release from UC San Diego Health. I’m grateful to have had the time to research my options and select a team who focuses on my type of tumor.
I’m still not thrilled with what I’ve had to choose in terms of losing my hearing, but I am working on coming to terms with it. Accepting, maybe? I’m sure I’ll feel differently post-surgery when reality hits me, but for now, I’m doing my best to keep my perspective focused on the positive.
A friend of mine in my women’s group at church was recently telling me about how there have been times in her life when she has known she needs to go THROUGH something to get to the other side. There’s no going around the circumstances that have come my way or my family’s way lately. We can only go THROUGH them.
It’s been an extremely difficult week and a half. Probably one of the hardest to date. But I’ve clung to my faith (even if it was by a thread at times,) and have caught a glimpse of what my friend was talking about regarding going THROUGH our challenges. Then I saw this in the restroom at church today. Coincidence? I don’t think so.
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…