Mid-July Update

At the end of another long and difficult week, I wanted to provide a quick update on Sami’s journey with glioblastoma. I think I can safely say that all of us - Sami, Emma, Lara, and me - are exhausted and worn down. So here’s my mid-July update:

Sami had a regular check up at UCSF on Tuesday. We started with an MRI and then raced across town in San Francisco to visit the neuro oncologist. While the MRI images were not great (mostly because Sami found it difficult to hold still), the doctor compared the images this week with the images from the beginning of Sami’s hospital stay in late May. He showed us that the swelling had subsided substantially - which was very positive news. He told Sami she could start tapering off of the steroids she’d been taking to control the swelling. Finally! The steroids bring their own side effects, and Sami is ready to be done with them. We also had a good talk with a social worker about Sami’s emotional and mental health. We were exhausted when we finally rolled back into our driveway at 9pm (13 hours after we’d left home), but we all felt a little more hopeful.

Wednesday evening, as we were finishing up dinner, I received a call from the neuro oncologist. I’ve written previously about our frustration with lack of communication from Sami’s health care team; on the flipside, getting a call after hours from the doctor rarely brings good news, and this call was no exception. He told me that the radiologist had contacted him regarding Sami’s MRI, and had told him that they had seen two new lesions on Sami’s brain that he (the oncologist) hadn’t seen - and that he hadn’t mentioned to us on Tuesday. These lesions were significant enough that he told me that the current chemotherapy wasn’t working. And he told us that Sami’s best option was a stronger chemo drug (with potentially greater side effects).

I felt like the wind had been knocked out of me - I think we all did. I asked if we could talk over this new development as a family and come back to him the next day with our questions. Of course, he was traveling the next day, but he indicated we send him an electronic message that someone in the office would respond to. As of this evening (Friday), we haven’t had any answers. Despite our questions, however, Sami has decided to give the new treatment a try with the hope that it will slow the progression of the disease better than the first chemo drug. She’ll also continue with infusions designed to limit the blood supply to the cancerous tissue.

All of this is occurring against the backdrop of continued mobility challenges. Sami is able to navigate our house with the aid of a walker, although we are finding that she is at risk of falling when she’s especially tired. And one of the things the social worker helped us all understand is that we all have some anger about this situation that has nothing to do with the quality of the health care Sami has received. We’re angry at the situation - the fact that my active, smart, successful wife has had much of what made her active, smart, and successful stripped away.

As I wrote in my last blog (Home… for Good), we are not planning to go back to the hospital. We all hope this new treatment brings a window of relief, but regardless, we will go through this next phase at home. 

Finally, I want to end with a few thoughts that have been floating around my head about how we talk about things like this. Talking about cancer - any kind of cancer, I think - is difficult. What do you say to someone who has cancer? What do you say to someone who’s caring for a loved one with cancer? Before our personal experience with glioblastoma, I mostly avoided the subject, I’m afraid. I offered help, offered condolences, but quickly moved on to other subjects - mostly out of my own discomfort. Sometimes, I’ll admit, I didn’t say anything.

Today, I find that our situation is all-consuming. It’s all I think about - even when I’m thinking about something else. And so I find myself annoyed at times when it’s not what other people are thinking about. This week, I realized that many of my friends are probably as uncomfortable as I have always been about discussing what we’re experiencing.

My own uncertainty and anxiety have made me grumpy. I’ve told several people over these last few months that I had a very short fuse. I hate that about myself - I hate being that pissed off guy who takes offense at a very minor insult and ruins someone else’s day. But that’s where I am.

That said, I have finally realized this week how much a simple “I’m thinking of you guys - how are you doing?” means to me. Thank you to our friends and family, who continue to help out, to check in, and to ask how we’re doing - you help us get through each day.