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. 

Advertisements

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

April 8

Hello, all – 

The team’s morale has recuperated a bit since the previous entry. Mom and dad spent the previous weekend in Half Moon Bay, sitting on the beach together, eating some great food (French, and sushi), and celebrating their 31st anniversary. Mom came back noticeably soothed and refreshed. She, dad, and, Hunter, and I lived in Half Moon Bay for the first four years of family life before we (plus a newborn Miles) moved over the hill to our current Atherton home. Half Moon Bay is a historic spot – home to their early years, the ocean, and good surf. It was really good to see mom in such revived spirits when she and dad came home on Sunday. 

As for dad, it’s difficult for me to get a grip on how he’s doing emotionally. Compared to mom and I, dad seems amazingly stable. Never do I hear him complain of his situation or his day. True to form, dad was not much different in spirit than when he left on Friday. One important thing I’d like to note is that it appears that dad’s having an easier time with the circumstances than mom or I. His monosyllabic report of the weekend was that the trip was “good. Highlight – good food.” There you have it! 

On my end, Robbie, Gavin, and I moved into our new Berkeley home on Tuesday. Tuesday was California’s rainiest day of the year, but we persisted and our home is coming together nicely. Since Tuesday evening, I’ve been sick with the flu. It’s taken me out of commission until just about today. I’ve spent the past few days over here, getting things assembled and organized. Considering how exhausted, sick, and negative I felt last week, I’m doing much better. I will spend about half of my time close to my parent’s house. I work in Palo Alto, and am currently participating in a yoga teacher training in Menlo Park. This keeps me very close to home at least 4 days each week. 

Dad is still very foggy – uncoordinated and easily tired. He stumbles regularly, and routinely neglects his left side as he’s walking around (bashing around into doors, counters, chairs, etc.). I’m doing my best to accept whatever he brings to the day, though usually it’s limited to a long list of urgent demands. I rarely see my dad through the fog he currently resides in. Mom will speak with dad’s oncologist tomorrow about the likelihood that the tumor has started to grow back. We both have a sneaking suspicion that it’s begun to. 

Mom and I are working on finding ways to feel supported by the community. I’m realizing that there’s actually very little that can be done to change the situation, but I truly appreciate hearing from all those who are following my updates. I find it’s easy to slip into feeling very, very isolated while all this is happening. It’s good to be reminded of supporters, even on the best of days. 

Thank you for listening. 

With love,

Mikaela

March 26

Greetings from a sinking ship, 

Dad found out the true numbers today: patients with GBM live on average a year. As my previous posts have indicated, things are on a gentle downward slope. Mom, dad, and I are struggling, though the dogs are getting many long walks as a result of these sadnesses. Any extra hands on deck would be much appreciated. 

With thanks, 

Mikaela and Margee