While I’ve completely embraced digital maps and global position system (GPS) technology, I still enjoy using paper maps - especially topographic maps. Paper maps rarely crash; on the other hand, finding exactly where I am on a paper map takes more skill than following the blue dot on an aerial photo map on my phone. I enjoy trying to figure this out!
In some ways, our experience with Sami’s glioblastoma over the last seven months has felt like navigating with a paper map as it’s being drawn. Part of this, I think, has been the fact that there is no outward visible manifestation of her tumor - we can’t see or feel any lumps or abnormal growth. Instead, we see neurological and cognitive symptoms associated both with swelling and tumor growth.
When the neurosurgeons we saw in January and February started talking about primary brain tumors, astrocytomas and glioblastomas, we started researching these cancers and their prognoses. As I’ve written previously, we learned that these cancers were manageable (hopefully) but not curable. We learned that fewer than 20% of patients diagnosed with glioblastoma survive for more than 2 years following diagnosis. Our research, and our questions of Sami’s doctors, began giving us a rough idea of where we were on this journey.
When Sami ended up back in the hospital in mid February (following her first craniotomy in late January), we assumed that the tumor had started to regrow quickly. As Sami’s neuro oncologist at UCSF pointed out when we saw him in March, however, we had no way of really knowing - inexplicably, the first neurosurgeon had failed to order a postoperative MRI to determine how successful the surgery had been. Looking back, this felt like a major landmark had been left off our map. The oncologist also explained that the pathology report suggested a relatively low proliferation rate - in other words, the tumor did not seem to be especially fast growing, which seemed hopeful at the time.
My earlier blogs record Sami’s experience with the first round of chemotherapy (with an oral drug called Temodar) and the concurrent six weeks of radiation treatments. As this wrapped up, she felt pretty lousy - which the doctors said was due to brain irritation and swelling associated with the treatment. At the end of her first round of maintenance chemotherapy, she suffered a major seizure and ultimately spent the first three weeks of June in hospitals. The MRIs she had during this phase of the journey hinted at “flares” and “evidence of disease progression,” but we came home with the understanding that Sami’s difficulties with walking, remembering, and speaking were due to ongoing brain swelling. Nobody, including us, seemed terribly worried about new tumors.
On July 11, we went back to UCSF for a full day of appointments (MRI, oncologist visit, and an Avastin infusion). Sami was unable to hold perfectly still for the MRI, resulting in less-than-clear images, but we left the oncology appointment with the impression that the swelling in her brain was subsiding, and that she’d be able to reduce the amount of steroids she’d been taking to control this edema.
The day after our visit, however, the doctor called and said the radiologist had found evidence of two new tumors in Sami’s brain - one on her cerebellum and one on her left occipital lobe. He said the fact that these new tumors were so far removed from the first mass (on her left frontal lobe) suggested that the cancer was more aggressive that we’d thought, and that the Temodar chemotherapy had been ineffective. He said we should consider another chemo drug. I felt like we’d reached a new landmark on the map. I also felt like the wind had been knocked out of me.
Towards the end of that week, as we tapered the steroids, Sami’s condition began to worsen again - she had more brain fog, and she fell several times. While she’d been able to move around the house with a walker (but without our help) when she came home from the hospital, we found that weekend that we needed to help her at all times to keep her from falling. We talked to the doctor on Sunday, July 16, and he said we needed to increase the steroids again.
Over the next ten days, we talked with Sami’s UCSF team several times. Finally, this week, we learned that her ongoing (and worsening) symptoms were a direct result of the disease progression (in other words, the new tumors), not because of brain irritation and swelling associated with surgery and radiation. We learned that some glioblastomas are genetically imprinted with resistance to chemotherapy (and that nobody seems to know why). We learned that the Avastin infusions Sami has been receiving had not been as effective at reducing swelling and limiting tumor growth as her doctors had hoped. And finally, we learned where we are in the likely timeline for the ultimate progression of Sami’s cancer - more likely a matter of months than of years. We found where we are on the map.
Obviously, this was a difficult week for all of us, and yet I feel somewhat better oriented now that I know where we are. To some degree, I think Sami feels the same. She has struggled emotionally and mentally since the initial diagnosis (who wouldn’t?!); over these last several days, she seems more at peace to me. I am afraid of what comes next (as Sami’s symptoms multiply and intensify), but I’ve also realized this week that I’m doing things for Sami today that I didn’t think I was capable of 8 months ago. I’ve also realized that my prayers for Sami are evolving; rather than hoping for a cure (or at least long-term management), I pray that the time we have left together brings us some peace - and that her ultimate passing doesn’t involve more suffering and pain.
As this new reality has settled in my heart and in my mind, I’ve also noticed that I’m taking a great deal of pleasure from very simple things around me. A ripe tomato in our garden; a Common Merganser hen and her 15 chicks swimming by me as I fished on the Little Truckee River; a home-cooked meal enjoyed with Emma and Sami. A few nights ago, as Sami and I were sitting on the edge of our bed, she put her head on my shoulder - something she hadn’t done since before her hospitalization in June. I found it hugely comforting. I remain sad, angry, anxious, and frustrated, but these little bits of peace and grace and light have helped calm me. I hope I remain open to them.
Finally, thank you to all who have reached out with thoughts, help, and support. And thank you to all who have followed our journey. I write mostly for me - but I also hope that writing helps others process what they may be facing. A good friend told me this week that sometimes it’s hard to talk about our own experiences with cancer (as a patient or as a caregiver) because we realize that everyone’s journey with this disease is different. The map of our journey is unique to us; but knowing that others have navigated similar maps is helpful for me. Thank you.
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