Four weeks later

We cannot even believe that a month ago almost to the hour, Brian collapsed and our new life began.  What a fast and tumultuous four weeks we have had!  As overwhelmed as I have been at times by fear and uncertainty, I am overwhelmed, more still, by the kindness of our family and friends. I simply cannot find the words to express my most sincere gratitude. From the meals and mail to the visits and care packages, I have never in my life felt more surrounded by love and support.

This week my sweet childhood friend Amy made me a basket full of goodies and dropped it off as a surprise for me at work. It was full of things that were tied to memories of the goofball things we did as little girls. Looking through it, I had the first really genuine laughs of the week and got to share some stories with Brian.

Last week we got a great box full of Harry and David goodies from my dear friend Emily who currently lives in Philadelphia. She and I worked together at Barnes and Noble and became close in 2005. She is one of the dearest friends I have made in adulthood.

Alissa came to work this week too and brought an Easter basket with some of mine and Brian's favorite Easter candy. He just announced to me that he is going to eat one of the caramel eggs she included while he listens to Brahms. :)

Anyway, I honestly mean it. I am so very thankful to everyone for the continued prayers and help of all kinds. I don't feel very eloquent tonight, but I just never realized how many people really love and care for us. I guess no one does until there is a crisis. But I promise to try even harder to be mindful of opportunities to serve others. One of my favorite quotes comes from the April 2011 conference:

"Often, the answer to our prayer does not come while we’re on our knees but while we’re on our feet serving the Lord and serving those around us. Selfless acts of service and consecration refine our spirits, remove the scales from our spiritual eyes, and open the windows of heaven. By becoming the answer to someone’s prayer, we often find the answer to our own."

I was moved by that talk when I heard it, and it carries special significance to me now.


In clinical news, we did have the appointment with the nurse practitioner from neurosurgery today. We had a much better experience with her than with the medical oncologist. She sat and listened as I asked each question on my very long list, and answered with empathy, confident knowledge, and compassion. We learned that some of the annoying symptoms Brian is having right now like weakness and soreness at his right temple are completely normal. He gets to wean off of the seizure medication already starting this week, and he is released to drive! He is very excited about that.

Brian really wanted to know about prognosis. The other doctor really avoided that question. She said that honestly, she couldn't even venture a guess.  He already has one of the rarest brain tumors, but even more rare is the onset and stage for someone so young and healthy otherwise. She said a lot of people with primary brain tumors are diagnosed in their 50's, 60's, and 70's so Brian is definitely NOT normal and that can be good or it could be bad. Of course then Brian asked, "well, what would my prognosis be if I were in my 50's" and she said maybe 7-10 years. She did clarify for us that those statistics to refer to survival time and not recurrence time. She said a person with a brain tumor like his could live for 10 years regardless of whether the tumor recurs at 2 or 8 years.

They discussed Brian's case at tumor board yesterday, instead of a week ago like we thought. His surgeon, the medical oncologist, and the radiation oncologist all agreed that we should wait on the radiation since he is so young. We just don't want to spend it now and then not have it when the tumor comes back.

He is also released to go back to work April 9th. One of my concerns was his seizure risk going back to work. The nurse practitioner assured me that since he will be having MRI's every 3 months, they will be able to see the tumor come back millimeter by millimeter and they will see something long before he would ever have any symptoms again.

And the other good news, that was an answer to our prayers is that the oncologist that specializes in brain tumors will be back in July and we will get to switch to him! He has been doing a special fellowship at Duke University for a year so hopefully he will come back with lots of information.  Its funny because while we were waiting to see the doctor last week, I was reading his biography and I read that his hobbies and interests were playing piano and reading about history. I told Brian I wish he was our doctor because those two have both of those things in common. Just from reading about him I feel like I like him much better.

We also got copies of Brian's op reports and a picture of his brain before surgery that I will post so you can see how big his tumor was. The MRI picture is backwards for some reason so right is left. You can see the tumor as a whitish mass on the left side of the brain. Its hard to distinguish in the MRI what is tumor and what is swelling, but you can definitely see that it is pushing the midline of his brain off to the side. So glad that is out of there!

So here is the picture.  The tumor is circled in red. Hopefully, I get to just post fun things we are doing for the next few weeks while Brian is off with no restrictions.

Love,
Lindsey