I apologize for this very long post. Sami and I wanted to provide an update after this week’s visit to UCSF, which I hope this does. For me, though, writing this down is also part of figuring out what’s happening. I appreciate your indulgence.
Perhaps my experience as a rancher means I’m wired a bit differently than most - I don’t know. I’ve been told (accused, actually, on occasion) of being a linear thinker. In some ways, this seems odd to me - I see the management of our sheep as a cyclical (rather than linear) progression through the year, and from one year to the next. Regardless, my approach to raising sheep - and to much of the rest of my life - is a series of steps. Before I turn the rams in with the ewes, I need to get the ewes ready to breed. Before they are ready to breed, I need to wean their lambs. Before I wean their lambs, I need to have them sheared. In other words, there is an orderly process to how I manage my sheep - and to how I think about other aspects of my life. Our family’s recent experience with the healthcare system suggests that this stepwise approach isn’t always used. For me, our trip to UCSF this week was a case in point.
Our first trip to the UCSF Neuro Oncology Department in March was encouraging. We finally got answers about what was going on with Sami’s glioblastoma diagnosis. We talked with a doctor who talked slowly enough - and who took enough time with us - that we could ask all of our questions AND understand his answers. And we learned that Sami might be eligible to join a clinical trial of an experimental vaccine. For the first time since that January Friday evening when Sami’s CT scan revealed a mass on her left frontal lobe, we felt like we had some basic understanding of what was going on - about what Sami was up against. The diagnosis - and the prognosis - were frightening, but the scientists in both of us were reassured to have solid information about what was happening to Sami’s brain. We both felt like a clinical trial offered both the hope of a potentially successful new treatment and the comfort that Sami’s participation would advance the treatment of glioblastoma for future patients.
All of that happened before Sami started a six-week course of radiation and chemotherapy. Her treatment was reasonably easy at first, but by about halfway through, the side effects started catching up with her. After she experienced a mild seizure over Easter weekend, these side effects intensified. The day after treatment ended, we found ourselves in the emergency room. In the three-plus weeks between the end of treatment and this week’s UCSF appointment, Sami was exhausted and depressed. She stopped communicating with friends. The fact that the symptoms she experienced during this period could have been side effects or symptoms of disease progression (or both) were disconcerting to all of us. We looked forward to this week’s appointment at UCSF - both a check-up and a final screening for the clinical trial - as a day where we might get more answers about what lies ahead. We looked at the appointment with hope.
UCSF is one of the top neuro oncology centers in the country. But it’s in San Francisco - and while this is an aside, I’m always intimidated by driving in San Francisco. Google Maps has helped immensely, but the simple act of driving across the City will always be stressful for me. I’m frequently struck by the fact that much of the immense wealth that built San Francisco came out of the rivers and creeks and mine tunnels in the Sierra Foothills where I grew up (and where I currently live). I apologize for this digression, but a foothill boy will probably always feel intimidated by San Francisco - and that’s how my day started.
Our first appointment, we thought, was with a nurse to go through the information about the clinical trial - but we ended up getting to see the doctor. He checked Sami’s neurologic function and watched her walk. He asked about her sleep patterns and how much exercise she was getting. Sami said she was very tired and felt like sleeping much of the time, but that she wasn’t sleeping well at night. I reported that she’d been walking to the barn and back with me most days - probably around 100 yards or so. He reassured us that Sami was doing as well as could be expected neurologically and physically. Then he went through the trial information with us. He asked Sami if she wanted to join the trial - she did. He got stern with us after this, “No more naps during the day - that’s keeping you from sleeping at night and making you feel fatigued. And we need to start measuring your walks in miles, not yards. Exercise will make you feel better.”
After seeing the doctor, one of the trial nurses walked through all of the consent paperwork with us, which took a little more than an hour. Everyone, from the nurse to the nurse practitioner who popped into the room at one point, to the doctor, made it clear that Sami’s care and well-being came first - that the trial was secondary to her treatment. We confirmed that 3 out of 5 patients in the trial would receive the experimental vaccine. Sami liked the odds that she was more likely than not to receive the experimental treatment.
As we wrapped up and prepared to drive to the UCSF imaging center across town, the nurse practitioner let us know that Sami would also need to have blood work and a urine analysis to establish a baseline for the trial. While we had understood we’d have a second appointment with the doctor after Sami’s MRI, the doctor said we had the option of talking about the MRI over the phone or by video later in the week. Sami was ambivalent, but I said I felt like it would be helpful to know what was going on before we left for home that afternoon. We made arrangements to come back after the MRI.
Driving across San Francisco and getting the MRI were thankfully uneventful. After stopping by the lab, we found ourselves back in the neuro oncology waiting room. Lara read, and I followed the end of the Giants game on my phone; Sami rested. We waited for well over an hour. Finally, the nurse practitioner came for us and walked through Sami’s lab results. She gave us a final checklist for Sami’s acceptance into the trial:
Sami’s MRI results would have to be consistent with treatment effects (which I understood to mean no disease progression).
She would have to be on 4mg of steroid per day (or less) with no neurological effects (at the time of our appointment, she was taking 8mg per day).
Some of her lab values would need to improve. Sami needed antibiotics to prevent pneumonia and to treat a low-grade infection that was a result of radiation and chemotherapy. She would need to be off antibiotics before starting the trial.
We made a plan to come back to UCSF at the end of May to see if Sami had met these conditions. The nurse practitioner told us that June 7 was the last day Sami could join the trial.
At that point, the doctor knocked on the door and called the nurse practitioner out to talk with her. We waited some more - I’ve come to realize that waiting for the care team to have a private conference without us around is rarely a good sign. When the doctor came back in, he told us that the MRI showed about what he expected to see in Sami’s left frontal lobe (where the tumor had been removed) - she had some swelling and other effects of treatment. He also showed us a second lesion in Sami’s right temporal lobe - a lesion that had also appeared in the post-operative MRI Sami had had in February. This second lesion, he told us, meant Sami could not participate in the trial. This was the first we’d known of a second lesion.
We all felt like the rug had been pulled out from under us. After spending the morning completing the consent forms, learning about a disqualifying condition we should have known about before we even came to San Francisco was devastating. In my linear fashion, I began questioning why we’d gone through the consent forms before completing the lab tests and MRI - I felt like I’d rather have known Sami didn’t qualify before getting my hopes up. And I wondered why no one - not the neurosurgeon, not the radiation and medical oncologists at home in Auburn, and not the UCSF doctors - had mentioned a second lesion before.
Throughout all of this process, it has been incredibly helpful to have other people listening and interpreting the news we get from medical professionals. Both of our daughters have asked great questions, and have helped us understand what we’re hearing. Friends and family have helped too - and have helped me step back from the brink of anger, frustration, and confusion. During the course of the last three months, I’ve been reminded that we can all participate in the exact same conversation and hear very different things. Over the last several days, I’ve wondered if someone DID mention a second lesion early on, and I just missed it (or forgot it). I’ve wondered if the news that Sami couldn’t participate in the trial would have been easier to handle if it had come in a phone call or video meeting several days after our appointment. I wonder what else I’ve missed or misunderstood. I don’t know - doubt continues to be part of this experience for me, as well. Am I doing the right thing?
Going forward, Sami will start a 12-month maintenance chemotherapy regime. We’ve started the process of tapering off of the steroids, which should help her feel better emotionally. We’re helping her sleep less during the day and exercise more. We’re trying to find reason for hope - hope that she’ll feel better in the coming weeks, hope that continued chemotherapy will keep her disease from progressing for a good long while. But I find my own continued uncertainty to be difficult. And I continue to struggle with a healthcare system that seems disjoined at best and often dysfunctional. I wish we had a clear picture of what lies ahead.
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