April 16

Dear friends and family, 

Today we learned that the tumor is growing back. Mom, dad, and I met with Dr. Colocci this afternoon, and she confirmed our thoughts of recurrence. As I’ve mentioned in earlier posts, dad’s accumulated exhaustion attributed to the six weeks of radiation and chemotherapy has not improved for weeks, despite encouraging words from dad’s team that a revival of energy would come about around six weeks post treatment. 

I remind myself each day to refrain from holding expectations of dad, so as to protect myself from his disengagement and emotional absence. For the past few weeks, I’ve expected him to sleep all day and speak monosyllabically – if at all! Up until the last few weeks this has worked out well for me – I’m never disappointed and I feel prepared for the worst. But recently my seemingly bottomed-out expectations have not prepared me for dad’s physical and mental state. He struggles to understand what I was saying throughout the day, even with sustained eye contact and repetition. He has trouble taking his pills. He sleeps in doctor’s appointments. He stumbles all the time. When I reflect after our time together, I see that he’s worse than before. 

Mom and I have talked about this a lot the past few weeks. She and I saw that something wasn’t right, and she immediately called to make an appointment with our oncologist. We both felt that recurrence was a possibility. 

Today we received the results from dad’s MRI. From the words of Dr. Colocci, the team of oncologists met this morning to review dad’s MRI. From the meeting, it was clear to all that the MRI exhibited “significant inflammation indicative of tumor growth.” Colocci emphasized how striking the tumor’s growth was, noting how this was relatively fast recurrence compared to the “average” glioblastoma progression. 

We will start Avastin (http://en.wikipedia.org/wiki/Bevacizumab), an IV drug that slows the growth of new blood vessels, specifically around the site of the tumor. Around 60% of GBM patients respond well to Avastin, slowing the growth of the tumor for six months on average. We will start the bi-monthly treatment, as well as the continuation of dad’s chemotherapy as soon as it passes through insurance. 

From the appointment with Colocci, I took away what I had feared: dad’s tumor is growing particularly aggressively, placing him (so far) on the left tail in GBM’s bell curve. Recurrence after 4 months post diagnosis. Though I had the suspicion that the tumor was growing back even before we received the news from the MRI results, the appointment today dealt me an additional blow. Dr. Colocci’s delivery of the news – the degree and significance of the tumor’s growth – was more than I had prepared for. 

Community, the days would be much more difficult without your words of love and encouragement. If there is hope in this situation, it comes from the understanding that our family – nuclear, extended, and created – will carry each of us through this. From my end, I miss my brothers and ache for their return from school post finals. It feels incomplete to move through today’s news without all of us here to hold each other up. Mom and I are doing the best we can, but some fortification will be welcomed with a sigh of relief. 

Goodnight, all. 

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