April 13

Hello, all!

The last week has been a tender balance of observation and action. Mom and I have witnessed dad’s growing exhaustion and fogginess in the past week. We didn’t exactly know what to make of it, as there’s a certain degree of exhaustion that’s to be expected following radiation and chemotherapy. Dad finished his treatment on February 27, so this puts us at a solid six weeks post radiation. Dad’s radiation oncologist and radiologist predicted that dad would experience a peak in his energy by six weeks post treatment. We are not witnessing an apex of any sort. Rather, there is a continual decline each day, week, month that passes. 

Take this morning for example: dad woke up around 9am, ate a bagel, drank some coffee, and headed back to sleep. When I went into his bedroom to check in on him, I had to ask him three times over to take his medicine. I was a few feet away from him each time, but he was unable to track my words and content. When I got him to sit up to take his medicine, the process of taking his pills took over five minutes. This is a stark change from previous mornings, as usually dad’s self-sufficient in some of the habitual things like drinking coffee and taking pills. 

Mom, dad, and I scheduled a meeting with dad’s radiation oncologist last Thursday. Mom and I were concerned about dad’s state, and wanted to check in with Dr. Colocci about the symptoms we’re witnessing. Dr. Colocci echoed our concerns about dad, and indicated that it would be a good idea to schedule an MRI to determine whether the tumor is growing back again. According to Dr. Colocci, dad’s symptoms (exhaustion, increased time sleeping, poor motor control, and left side neglect) are what recurrence looks like. Dad will have an MRI tomorrow afternoon, but we expect to see some growth in dad’s tumor. If there is growth, we will start additional treatment via Palo Alto Medical Foundation and Stanford. (Remember dad’s near participation in the vaccine trial at Stanford? Dad has the necessary mutation to participate in the trial, so dad will be able to participate – in the event of recurrence.)

The way I see it, dad responds really well to chemotherapy. Fortunately, dad will continue to take chemotherapy for the rest of his life. I’d expect we will witness a minor lull each month, corresponding to the five days of chemotherapy. This could be guesswork, but mom and I definitely observed some improvements two weeks ago when dad was taking his chemo. 

With any GBM patient, time is not on our side. From my perspective, there is a narrowing of activities that dad can comfortably partake in. Fortunately, dad’s easy to please: a constant stream of full coffee cups and a space heater make him one content man. To all those who are able – now might be as good a time as any to come over for a visit. 

My gallant mother is just finishing up our taxes for the year. She deserves a standing ovation! Dad has always done our taxes, and it’s a miracle that mom was able to work through dad’s system to produce her first round of taxes, and especially considering the circumstances. 

Mom and I send our gratitude to you all for reaching out to us this week. It really, really made a difference for the two of us.

With love,
Mikaela

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2 thoughts on “April 13

  1. M,

    Thank you for the updates on your dad’s health. Am planning to come see him 5/4, possibly with my son. I was the friend that helped lure your dad to SF and eventually HMB when he got out of Tulane. We had some great times surfing, biking, running and just hanging. He means a lot to me and I really appreciate your insights.

    KUDOS to Mom/Margee for dealing with the taxes during such a time. I can imagine the learning curve she faced. She is doing a great job!

    Warmest regards,

    Mike Sims

    • Thank you for reaching out, Mike. It’s so good to hear from you. I look forward to meeting you in early May! And I’ll pass on the kudos to big mama – that was a huge achievement!

      PS – HMB is one of dad’s favorite spots in the world.

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