Stan and I are setting up this site on CaringBridge so that we can keep family, friends and loved ones updated on what is happening with Stan. We will be inviting people to be able to view this site and we will allow those people to invite others to view this site.
Let's start with a little history about what has happened and how we ended up here.
On February 24, while at our home in Occidental, California, Stan was in his art studio and his left hand began to shake. The shaking lasted for two hours before stopping. After the shaking stopped Stan came upstairs to the office where I was working and told me what was happening. We immediately called the office of his primary care physician to tell her what was happening and ask for advice on what we should do. We were connected to the on-call doctor within five minutes and did a Zoom session where we described what was happening and she did a neurological assessment of Stan on the Zoom call. The doctor asked me to take Stan's blood pressure, which was very high at 179/120. When we told the doctor what Stan's blood pressure was, she advised me to take him to the emergency room immediately for further assessment. We went to an ER in Santa Rosa where Stan had an evaluation including a CT scan of his brain. After almost six hours in the ER, Stan was released with a cleared CT scan and advised to have an MRI done for further assessment.
We experienced a lot of difficulty in trying to get the MRI scheduled without waiting for several weeks but we eventually got it done. On March 16, Stan's primary care physician called us at home and shocked us by telling us that Stan's MRI showed that he had a brain tumor. His doctor referred him to UCSF Medical Center in San Francisco for further evaluation. On March 22 we had a Zoom call with a neurosurgeon at UCSF. Based upon Stan's MRI, he recommended that Stan have surgery as soon as possible to remove the tumor for a pathology examination. He said that older patients like Stan tend to have Grade III and IV tumors (I being the best and IV being the worst). But Stan's overall good health and lack of prior symptoms made it possible that his tumor would be a Grade II.
We scheduled surgery for March 30 at UCSF. On surgery day, I had to leave Stan at UCSF and was not able to stay with him due to COVID restrictions. His brain surgery lasted for six hours. The surgeon called me at home at 7:30 p.m. to tell me that the surgery went well and he was able to remove all of the visible tumor. He shared with me that Stan's tumor showed some "concerning characteristics". He also told me that the full pathology report would take about a week, and it would be that long before we knew the details of Stan's tumor (malignant or benign, and if malignant, what stage).
I was not able to see Stan the night of his surgery. I went to the hospital the next morning and found him strapped to a chair in his room (so he wouldn't fall out of the chair) with bandages all over his head. I was not prepared to see him like that. Stan's verbal responses to questions were very slowed and his affect was very flat. The neurosurgeon had warned me to expect this, but it was still startling to see my husband in this state. I spent the day at the hospital interacting with doctors and nurses and trying to make sure that Stan had everything he needed. I was advised that Stan would probably be in the hospital four days, until April 3.
On day 2 after surgery (April 1) Stan showed such dramatic improvement that he was released from the hospital at about 6:30 p.m. that evening. I took him home to our house in San Francisco as it was too late to drive to Occidental that evening and I didn't want to be far from the hospital during the night in case Stan needed a doctor. We drove back to Occidental on April 2 for Stan to recuperate and to wait for the pathology results.
It was a long week to wait for our appointment with the neurooncologist on April 8 to get Stan's pathology results. We were hoping to hear that his tumor was a Grade II, but I had tried to prepare myself for a Grade III diagnosis. Stan was holding out for a Grade II diagnosis. Both of us were completely unprepared when the neuroongologist told us that Stan's tumor was a Grade IV glioblastoma, an extremely aggressive and fast-growing type of brain cancer. She also told us that the hand shaking that Stan experienced on February 24 (our first indication that something was wrong) was actually a seizure. We spent the remainder of our Zoom call discussing treatment options. The doctor recommended a course of radiation treatments and chemotherapy, to start four weeks after surgery. Stan decided almost immediately to pursue aggressive treatment.
Stan and I had previously scheduled a family/friends Zoom call on Thursday evening after our call with the neurooncologist. We shared the bad news with the group (including Susan (Shanna's and Jenna's mother), Stan's sister and my mother) on that call. It all feels like a blur now. Shanna and Jenna were not on the call. Stan, Susan and I called Jenna afterward to share the news with her. Susan also called Shanna afterward to tell her the news.
Stan was given four weeks to recuperate from the brain surgery before starting radiation and chemotherapy. On April 29 he started a 42-day marathon of dual radiation/chemotherapy treatments. He had to have radiation treatments fives days per week (Monday through Friday) for six weeks. He had to take a chemo pill nightly every day for the same six weeks (42 days). He actually tolerated the dual treatments amazingly well--no nausea and no fatigue. He did experience some hair loss on his head from the radiation treatments. The radiation/chemo marathon ended on June 10.
On June 11 Stan started a four-week break with no treatments of any kind. He had his first post-treatment MRI on July 9 and it showed no evidence of tumor regrowth. His neurooncologist was very encouraged by these results. Stan resumed adjuvant (post-radiation) chemo treatments on July 12. The plan is for six chemo cycles (5 days of daily pills, followed by a 23 day break--repeated six times). His last chemo cycle is scheduled to end just before Christmas.
Stan started an additional treatment that uses electrical fields (called tumor treatment fields, or TTF) on July 22. It's a treatment that sends electrical currents through your brain. The healthy brain cells aren't bothered by the electrical currents, but the cancer cells hate it--the currents keep the cancer cells from dividing and growing. It was only approved by the FDA in 2019. Stan started wearing the electrical pads (called arrays) 24 hours per day, with breaks and array changes every four days. He is tethered to a battery/machine that powers the arrays 24 hours per day. He tolerated the TTF treatment really well for almost three months, then the skin on his scalp started showing signs of major irritation. He had to take a ten day break from treatment in late October. When he resumed wearing the arrays after that break the skin irritation came back quickly. So now we are going to change the arrays every two days to give his scalp more frequent treatment breaks. We will monitor his skin condition closely and adjust treatment protocols further if needed.
Stan had his (almost) six-month post-surgery MRI on September 7 and it showed no evidence of tumor regrowth. The doctor was very pleased with these results.
Things were going along uneventfully until October 22, when Stan suffered another seizure. He was on a Zoom call with two friends and he collapsed in front of them. One of the friends called me (I was upstairs) and told me something was wrong with Stan. I rushed downstairs to find him on the floor, sweaty and disoriented. I helped him up and got him his medication and something to drink. I reported the incident to the on-call neurooncologist at UCSF (this was 9:00 p.m. on a Friday night) and she told me that Stan had suffered a seizure. I did not have to take him to the ER--I just had to monitor him closely over the next few days to make sure he didn't have another seizure. His next MRI was already scheduled for November 1, and his regular doctor said we could keep that schedule. November 1 arrived and the MRI results were not good. The scan showed a new spot on Stan's brain, in a location close to the location of his original tumor, that was either a new tumor or a spot of radiation necrosis (a possible side effect of brain radiation). This new spot is what caused the seizure he suffered on October 22. His neurooncologist discussed Stan's case with UCSF's Tumor Board on November 4. The Tumor Board thinks that the new spot is not a new tumor, but caused by the radiation treatments that Stan had after his surgery (the new spot is within the radiation field that got zapped). Stan will now take a high dose of steroids until his next MRI on November 30 (only four weeks away instead of the usual eight weeks), which give us more information about what is going on.
Stan and I will continue to add updates to this site on how he is doing and how things are going with his treatments. We have received so much love, care and support from our family, friends and colleagues and we could not have made it through the difficult months since we were told that Stan had a brain tumor without that support. Thank you to all of you who are supporting us through this unexpected journey.