Brian’s Update- Reader’s Digest Version

In February of this year, Brian’s routine six month MRI was clean as a whistle. News we had come to expect and were happily enjoying. In April though, his behavior began to change, slightly at first, in ways only those of us closest to him would notice. We all made a lot of excuses. He’s tired, he works nights, he works a lot of overtime…but the changes accelerated to point where I knew something was very wrong. He had another MRI at the end of April and in just two months, his cancer was back with a vengeance.

He underwent a second successful craniotomy with total resection by Dr. Tsung, the same surgeon who did the first procedure six years ago, and our worst fears were realized when pathology came back confirming that Brian’s cancer had progressed from grade III astrocytoma to grade IV glioblastoma. This is the worst, most aggressive brain cancer you can get. Furthermore, his tumor is MGMT unmethylated making it resistant to Temodar which is the gold standard chemotherapy for glioblastoma. Despite this, he did do two cycles of Temodar since he is unable to have anymore radiation due to the doses he received six years ago.

He has had a summer of complications. We tried to take a family trip with his sister and her family to their cabin in Minnesota, but the day after we arrived, Brian became violently ill and after an ED visit in Minnesota, Adrianne, Brian, and I made a race for home. With our kids and Adrianne’s Ivy, we drove through the night to get back to Illinois, charting our course through cities with major university hospitals in case of emergency, and with me checking Brian’s temperature every hour praying he wasn’t going septic. We arrived home and were in the ED by 3am where Brian was admitted to the ICU for hydrocephalus. He had an external ventricular drain for a couple days and then a permanent VP shunt placed. That was the end of June and we hoped for some peace, but it was not to be. In August, Brian had his first post op MRI from his May surgery. In just three months, Brian had tumor progression. We weren’t without hope though, as this helped him to qualify for a clinical trial at Northwestern in Chicago. That was a roller coaster in itself as we went up three separate times and were in and out and in and out of the trial.

During all of this, we lost Brian’s dear Grandma Branch. The true matriarch of his family. Even at her age of 94, it was a sudden and unexpected blow to our whole family. Especially Grandpa who misses his companion with his whole heart and soul.

A glimmer of hope came rushing back the week after we lost Grandma, when we found our definitively that Brian was a candidate for an oncolytic virus trial. These are cutting edge and very exciting. We went up on a Thursday for pre-op testing and surgery was scheduled for Friday.  Once again, our hearts were shattered, when at our final meeting  with the doctor in Chicago, we found out that the pre op MRI showed that in just three weeks since the last MRI showing progression, Brian’s tumor had tripled in size and there was a new small tumor. The size and addition of another mass disqualified him from the trial for good. We were devastated.

Making the best of the worst situation, instead of coming home, we stayed in our fancy hotel and then took off on a road trip to West Virginia for the 17th annual Mothman Festival. I will let you google that one, its for another post.

We came home and Brian underwent yet another resection on September 20th to remove the bulk of the new tumors. Dr. Tsung worked his miracles again and Brian is recovering well. We were able to participate in the Mark Linder Walk for the Mind, an annual walk supporting brain tumor research right here in our hometown.

Then yesterday, two weeks after surgery he was admitted again to the hospital with cerebral edema, likely caused from the recent discontinuation of his steroids that he takes after surgery. We only had to stay one night and Brian is home in bed resting now as I write this.

As if this isn’t enough, I am experiencing a health crisis of my own. And that’s for the next post. These get so long.

One thought on “Brian’s Update- Reader’s Digest Version

  1. Ben also experienced that and to get a shunt. My heart is breaking for you all. When you’re focused especially since you are a nurse I can only imagine because I only pretended to be a nurse for years without choice or training but when you’re focused on all of the bs that comes along with this disease it’s tough to remember the human that you fell in love with. Brian is still that guy that you married. After caregiving and after seeing him through this illness it can take away from the basic level of relationship you had. If you can step back and view him as that guy. I couldn’t do it. All I could see was the illness. I had a very difficult time just simply seeing Ben. I saw all the treatments, medicine regimens, side effects, what he can’t do now, how much he changed, his temperament, his inability to do the things he used to do, how much we had changed, how we stopped being a married couple and became caregiver patient. I never saw him once he got bed ridden. I couldn’t physically or mentally just sit with him and hold his hand. I was scared and he in the end didn’t see me anymore. My point. Try to take a step or stop moving at all and for a minute just love him like you did before all the crazy. Treat him like that man. I try to imagine why did I get to live through this and what can I say to you that’s real and not bs you. This is an evil disease that I’ve watched life after life pick and take away. You have no control the doctors have no control all we do is ride the ride. And people do the treatments but the side effects aren’t nothing. The side effects of your brain being taken out. Do people think about it. I think about you all every day. If I could take it away I would. Im sure you are in survivor mode right now. When you can eat, sleep, and get away for a 30 minute breather. Do not forget to take care of yourself too!!! Ask for help. I’m here. Believe in yourself. Much love.

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