Dustin was discharged from inpatient acute rehab at Shirley Ryan Ability Lab on August 14th, 2018 after only a week. But it was a necessary week. Dustin was improving his cognition quite quickly but still needed to have 24/7 supervision. We had a plan moving forward with outpatient day rehab at Shirley Ryan but it would be a couple of weeks before he could get into the program. We were okay with that, we were tired and just wanted home.
We had a couple days at home before our scheduled follow up appointment with the neurosurgeon. We were pretty anxious about this appointment because we’d get the pathology results. Hurry up and wait is awful. You have a vague idea that life is going to be very different and sucky but you don’t know what level of sucky. The hurry up and wait while living in the land of the unknown is another form of torture.
On August 16th, 2018 we headed back to the hospital for Dustin’s follow up appointment with the neurosurgeon who did his awake brain surgery. We thought it was going to be a basic follow up visit with the neurosurgeon where Dustin would get his staples removed and we’d get some pathology results. It ended up being a flurry of appointments with the neurosurgeon, neuro oncologist, and radiation oncologist.
All along my gut told me Dustin’s brain tumor was more aggressive than what his providers thought it was. They all thought it was a grade 2 glioma – cancer but slow growing and less aggressive. Unfortunately, I was right. We found out that Dustin’s pathology showed a grade 3 idh mutant anaplastic astrocytoma. I’ll save the details of his pathology for another post. But reality hit me like a fucking train. His team recommended concurrent chemo/radiation, followed by maintenance chemo. His team was hopeful and encouraged. He had good prognostic markers and with some luck he will have a good response to treatment that will hopefully buy him a long period of quiescence.
Nobody was willing to define what a long period of quiescence would look like in terms of prognosis. But I remember his oncologist saying, concurrent chemo and radiation is kind of a long slog with lots of appointments. It will be the focus of your life for about 6 weeks. However, overtime the appointments will become less frequent and “hopefully brain cancer will just be in the background and you can live your life.” At the time, and even now that statement strikes me as so tone deaf and dismissive.
Dustin had terminal brain cancer. There is no cure. Aside from a tragic event like being hit from a bus, this would likely be his cause of death. This would likely take his life much sooner than either of us wanted. I couldn’t comprehend how terminal and incurable brain cancer could just be a moot background chronic illness like hypertension or diabetes. For some people, I’m sure they can and do put brain cancer in the background like it is no big deal. But I didn’t know how we could accomplish this state of living with brain cancer in the background. On one hand, I knew it wasn’t going to do us any good to live in fear of this disease. In some sense, it has to go into the background to some extent. But I couldn’t ignore the fact that Dustin would likely be dead before he turned 40 and I couldn’t live in denial. Immediately, I knew that I wanted to find that balance of “hope for the best but prepare for the worst.”
Prognosis in brain cancer is tricky. There are so many variables that impact someone’s overall survival. These variables are called prognostic factors. These prognostic factors can be positive and suggest a better outcome. Other prognostic factors can be negative and suggest a worse outcome. Dustin had a ton of positive prognostic factors that indicated he’d have a better outcome. However, his oncologist warned us that sometimes these tumors do not behave as we expect. Meaning sometimes patients they expect to do poorly end up doing really well and exceed their expectations. While some patients they expect do well, don’t.
We were never given an expected timeline. His oncologist would only speak in terms of statistics of brain cancer patients. I’ll save the details of this for another post, but while we were both in the same room receiving the same information we both interpreted this information very differently.
The plan moving forward was 6 weeks of chemo and radiation followed by maintenance chemo. Dustin would also do day rehab during all of this but we weren’t sure for how long.
A few days later on August 20th, 2018 we went back to the hospital to do all the prep for radiation. Dustin would need special scans and a special mask made. The scans would help map the path and plan of radiation. The mask would be to hold his head perfectly still while had radiation.
On August 22nd, 2018, Dustin finally had his evaluation with the outpatient day rehab folks. I was able to attend this with Dustin. He was evaluated by speech, OT, and PT so goals and a plan could be established. This was probably the most disappointing appointment for Dustin. He thought maybe a week or two of brain school and he could go back to work. His therapists were very blunt with us – we were looking at probably 3 months of rehab before he could even consider going back to work. This was much easier for me to accept than for Dustin. I know these things take time. I also know that he has a brutal 6 weeks of radiation that may also set back his cognition.
Dustin was pissed and thought everyone was wrong. He wasn’t stupid. He wasn’t an invalid. He’s not as bad as everyone thinks. I told him that they would have regard check ins on his progress and if he could “graduate” earlier they would advance that timeline. Dustin was determined to prove them wrong.
Ultimately, Dustin did radiation from August 28th, 2018 until October 15th, 2018. This was Monday through Friday. Radiation itself was a quick appointment. Took longer to check in and change into a patient gown than it did to get the dose of radiation.
Juggling radiation with brain school and the various medical appointments was exhausting and overwhelming to say the least. Dustin would have radiation Monday through Friday first thing in the morning. Three days a week, Dustin would then go to brain school for 7 hours. He would have weekly appointments with the radiation oncologist. He would have weekly labs drawn. He would follow up with the neuro oncologist every two weeks. He also had appointments with his epilepsy doctor and neuropsych. Prior to starting radiation, we took care of several dental things as well since we knew he couldn’t have invasive procedures while on chemo.
Overall, Dustin did pretty well on the low dose chemo. This was an oral capsule called Temodar (temozolomide) or TMZ. He would take 145 mg of temolozolomide 7 days a week while getting radiation. We were told to give him a tablet of zofran (anti nausea) an hour before the TMZ at bedtime. Try to stop eating 2 hours before taking TMZ and no fluids an hour before. He never really complained of any nausea during this time. But he did have some constipation that was relieved with miralax. He had a few headaches, but those went away with Tylenol.
I’m thankful that Dustin was in brain school during all of this. It helped keep him active cognitively and physically. His therapists were correct, he did have a small decline in his physical and cognitive function during radiation. But since he was getting therapies at brain school they were able to monitor him closely and adjust his plan.
It was definitely a long slog to get through radiation. We’d wake up earlier than both of us were used to when we were working and hop on the train. First stop, check into the radiation department in the basement of Northwestern. Second stop, donuts. Depending on the day, we would either go home or I’d walk him over to brain school. On brain school days he was there until about 2:30 in the afternoon and I’d go home to run errands and workout. What was amazing, is the brain school people offered a taxi ride home at no charge to the patient. Dustin was able to have some independence in coming home by himself.
Brain school days were my days to catch up on chores around the house, running to the grocery store, and work out. I have a stationary bike which was my saving grace during all of this as it was my outlet.
On days that Dustin didn’t have brain school, we’d play games, work on puzzles, watch TV, and take a walk to the lake or to George’s Ice Cream Shop. So much of this time was a blur but I have some pretty awesome memories during this time too.
There were a few mishaps during radiation, but he finally got to strike the gong on October 15th, 2018 to mark his graduation from radiation. Dustin continued with brain school through October and started a slow return to work in mid November 2018. He was finally able to graduate from brain school on November 9th, 2018.He started his return to work part time a couple days a week, increasing his time at work until he was back to his full time work duties at the end of November 2018.
I remember being both so proud and so nervous about his return to work. He’d be starting his monthly maintenance chemo soon and I wasn’t sure what that would be like for him.
But he did it – an awake brain surgery, brain school, and 6 weeks of radiation all in a few months time. Dustin’s resilience and cognitive abilities still astound me to this day. I’m still in awe of his beautiful brain.
Beside you in time 