Tag: winter

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Glow-in-one

Larissa came over earlier in the day and entertained/watched the kids so Jake and I could get some last minute house things in order before his parents come tomorrow. House is clean, laundry is almost caught up, schedules for the next two weeks are ready to go.

After mini-golf we went out for dinner and came home and played Telestrations. Jake read to the boys and I laid in the girls’ room and talked with them before saying goodnight.

I am really going to miss our kids.  Deep breath.  I hope I can sleep tonight.

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T minus one week

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.

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So How Are You Doing?

“So, how are you doing?”  Even though this question has been asked multiple times, I still don’t know what to say.

Our first meeting to discuss Veronica’s diagnosis was with Dr. Adams at the University of Minnesota.  While Dr. Adams talked about what they found in the MRI with us, the resident who was with Dr. Adams pulled up the MRI images on a screen behind her.  In that moment I recognized this is something real and monumental.  I felt very small and unprepared, but I knew I would do anything to help Veronica.

At first when people asked me the question of “How are you doing?” my thoughts went right to the little guy that on the Axiom in the movie Wall-E.  The whole situation seemed epic and on its own trajectory, while I just needed to be around to help remove “foreign contaminants.”

I soon realized that this was completely wrong.  This isn’t just about Veronica, it is about all of us supporting her.  When we started to tell people about the diagnosis we were met with an outpouring of compassion and offers to help from almost everyone that we shared with.  Even people I consider casual acquaintances have offered time and resources.  I need to allow everyone around us to do their part.  This makes me feel like Veronica, the kids and I can get through to the other side of this not unscathed, but well cared for.  So how am I?  I feel well.  I feel at peace knowing that so many people are prepared to help in any way they can.

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Approved!

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.

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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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T minus 1 month

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.

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Gingerbread houses

On day 1 of Christmas vacation we assembled the houses.

Then on day 2, the kids decorated them. Can you locate the gingerbread under all of the frosting and sprinkles?

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MRI #2 – results

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.

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MRI #2

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.

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Selfie

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.