One week from today I’ll be rolled in to an operating room where a surgical team will save my life.
Writing that just stopped me in my tracks.
If I hadn’t pursued the bothersome pain in my ear a year ago, if my recurring sinus infections hadn’t annoyed me to the point where I sought treatment from an ENT, if I hadn’t stopped to take the time to take care of myself, if I hadn’t finally had an MRI done, I still may not know why the right side of my inner ear hurts, or why things just don’t quite feel right.
If left untreated, this tumor could cause significant side-effects, including death. It’s hard to believe that something so slow-growing can do such damage to a person.
Shecklet #3 has been having a particularly difficult time with the idea of Jake and me leaving for two weeks. I get it. I don’t want to leave my kids either. But I remind her (and in doing so, remind myself) that I’m leaving because I need to. I need to have this stupid brain tumor removed so I have can have the opportunity to be there for my husband and kids in the future. I know I’ve got a long road ahead of me. I’ve heard recovery sucks. But if going through all of this means I get to live, then let’s go. Norman has overstayed his welcome. (Actually he was never welcome in the first place!)
I had a change in perspective today. A while back I wrote about the “lasts” that I would be experiencing between then and my surgery. Today I realized that while yes, that’s true, after surgery there will be a plethora of “firsts” as well. And even though I’ll be experiencing sound in a dramatically different way, those are things I to look forward to.
I spoke with Kris at UCSD a little while ago. She shared that the surgical coordinator spoke with my insurance company yesterday and it’s official, surgery is a go for 1/23. The exact time may change from what I was told several weeks ago, but only by a few hours. I will know the definite time when I have my pre-op meeting with the surgeons on 1/22.
Jake asked me how I feel now that I have this news. Honestly, I think I’ve reached the point in the process where I’ve accepted what is in front of me and I’m ready. I know there are still many unknowns (e.g. How will I handle anesthesia? Will they be able to remove the entire tumor? What will the impact on my facial nerve be? How quickly will I regain my balance? How will the adjustment to SSD go?) but I will face each one as I’ve faced my initial diagnosis and I know I’ll get through them. I’m not anticipating any of it will be easy, but I know I’m not alone. I have the love and support of my husband and kids and so many others who have stepped forward to walk through this alongside me.
Now my focus can shift to prepping things for the Shecklets and my in-laws for the two weeks we’ll be gone.
T minus 2 weeks.
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…
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 ❤️
I had a tearful realization this afternoon that carried over to mass this evening. I’m one month from my surgery date. The flood of emotions was overwhelming and unfortunately, I didn’t bring enough tissues with me to church. The girls were so sweet and tried to comfort me.
The boys have been anxiously awaiting the release of the latest Star Wars movie. Jake and a friend went to see it last night, so he asked if I wanted to take the boys this afternoon. We got tickets for the 1:15 show and the boys loved it!
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…