My body must have known that I would need a lot of rest to power through today since last night I slept 8+ hours and only woke up once for a couple of minutes.
Before even getting the day underway it was going to be significant for several reasons.
First, today, November 17th, would have been my mom’s 57th birthday however she passed away almost 15 years ago during my senior year of high school.
On that fateful day in March 2000, the last words I ever said to her were “I love you” as I left to go hang out with a friend. While I was gone she succumbed to a long battle with Lupus and died from a heart attack.
It is a reminder to tell those people in your life who you love exactly what they mean to you because you never know when they could be taken away from you. And always end every conversation with them with “I love you” because if I had just written that off as “something you’re told to do” then I would have regretted never getting to tell my mom the day I lost her.
After a couple of meetings to start the day we headed to UCSF for a post-brain surgery MRI and follow up appointment with our neuro oncologist.
It was surreal as we drove to UCSF since it was the first time that I had driven that exact path since the morning of my brain surgery. Laura had driven it several times while I was in the hospital but it was a first for me.
The MRI wasn’t as bad as I had built up in my mind. When I had the previous 4-5 MRIs they were all either before or after my shoulder surgeries when I was still wearing slings.
My shoulders don’t fit comfortably within the MRI machine so the increased pressure of the tube on my shoulders always caused a lot of pain.
Today wasn’t nearly as bad though I still had some slight pain in my left shoulder/upper back area after laying on the hard bed for a while.
As soon as the MRI was completed we headed upstairs to meet with our neuro oncologist. When we sat down with her we first reviewed the MRI images that had just been taken.
The MRIs show what we expected: a little fragment of the tumor still left behind, some scar tissue and then the cavity created by the brain surgery.
I had held a bit of hope that the entire tumor had been removed during the brain surgery but we had been told that, even with an aggressive and successful surgery as mine was, there is always some of the tumor left behind when it is in the brain.
After reviewing the MRI images came the discussion about the options we have in front of us. We fully expected the options since it was something that we discussed with the neuro oncologist before I was discharged from the hospital.
It was something that we easily dismissed at that time since it was still 2 months away. Though we talked about the upcoming decision, we still hadn’t been in a position where we needed to make a decision.
As it was explained to us today, we have 5 options:
- Continue to monitor the small remnants of tumor with an MRI every few months
- Start radiation treatment which would last for 6 weeks with 2 hour daily treatments at a hospital
- Start a traditional chemo treatment that would last for approximately 1 year with having to take a pill daily
- Go through an aggressive dual treatment of radiation and chemo
- Join a clinical trial that is being led by our neuro oncologist that is testing a new chemo treatment. This option would involve being on the treatment for 2 years.
Based on the downsides we immediately disqualified radiation.
It was something I have been reading about in “Shrinkage” and having many of those issues confirmed by the doctor made it not sound so fun.
We can always keep it in our back pocket in case we really need to bring out the big guns. But until then, there is no reason to use either of those options (radiation or radiation + chemo).
That leaves us with choosing either to monitor it, go through traditional chemo or join the clinical trial.
While we have discussed it at length today, I’m not sure which of these options we will choose. We have the next 4-5 weeks to decide just due to time constraints with the clinical trial, if we choose to join it.
There are many, many pros and cons of all of the options - far too many to flesh out here but it is something we are weighing heavily.
As with everything during this journey, we will take it one step, one day and one challenge at a time. We will make the most sound decision based on all of the information we have in front of us. And no matter what decision we make, we will push through it.
Finally, today is my 100th straight day of documenting this journey. It is quite an accomplishment and one that I’m proud I have done.
If you had ever told me that I would consistently publish 350-1,000+ words per day for this long, I wouldn’t have believed you.
There are days that I don’t feel like sitting down to publish these updates but I have stayed focused on writing something about my day, my struggles and this journey every day.
Thank you to everyone who has come along with us on this journey whether you have read these updates on Facebook, on Built Unstoppable or you subscribe via email. We appreciate every comment, text, email, card, letter or gift that has been sent.