When we got Jeff’s brain scans back last month, the news wasn’t good.
Although the cancer had continued to spread everywhere else, we were beyond grateful that his brain activity remained stable.
Unfortunately, the most recent scans showed “innumerable tumors” on Jeff’s skull, the dura, and in the soft tissue.
Meanwhile, we are constantly battling his insurance. They are repeatedly denying medications and his Keytruda infusions.
My attention was focused on getting the Keytruda approved when I realized that his radiation oncology appointment had been scheduled for July.
Considering the significant spread, I thought this unacceptable and campaigned to see the RO (radiation oncologist) sooner rather than later.
We met with radiation oncology who tentatively wanted to do whole brain radiation.
Upon further review of Jeff’s brain scans, the RO felt like the soft tissue involvement were the tumors on the dura pressing into his brain as opposed to the tumors originating in the soft tissue. This is “good news”.
Jeff is scheduled to have brain radiation, but the RO will consult with the radiologist to determine if they’ll do whole brain radiation or something more targeted.
Jeff was due to have his 3rd Keytruda infusion yesterday. Insurance denied and his appointment has been rescheduled while they appeal the denial.
Jeff’s brain radiation is due to start this coming Wednesday.
Yesterday, Jeff slept much of the day.
He woke around 6 p.m. and was completely disoriented. He was unable to communicate on an understandable level and was exhibiting bizarre behaviors.
We monitored him briefly to see if his confusion would clear and when it didn’t we headed to the ER.
Initially they thought he had a stroke. Thankfully a CT scan ruled out a “big stroke” or bleed. They said it’s possible he could have had a small stroke, however, they felt the more likely scenario is that the tumors on the dura pressing into his brain caused him to have a seizure.
His language improved slightly while we were in the ER. He’s still very confused, although he knows his name and birthdate, but was unable to remember what month it is.
They also found his hemoglobin had dropped to 6.2. That’s the lowest its ever been.
They admitted Jeff to the hospital. They got him on IV fluids, a seizure medication called Keppra, and he was getting a blood transfusion. (As his levels are so low, I won’t be surprised if he has more than 1 transfusion.)
He sounds better this morning and is eager to leave the hospital. However, it’s clear he’s still cognitively affected. He was able to communicate his strong desires to be discharged, but feels like we’ve left him in the hospital for an extraordinary amount of time and he was still unable to tell me what month it is.
Although he couldn’t tell me the month, he knew enough to deflect the question with humor. When I asked him what month it was, he laughed and questioned, “not you, too?” Bless him, he’s trying.
Despite his lingering confusion, it’s definitely an improvement from yesterday.
We hope to have more of an update on his condition later today. It’s unknown at this time if they’ll keep him another night or not. They were super iffy about keeping him in the first place, which was alarming to us as it seemed above our skill set to care for him properly.
We’re so relieved he’s getting the care he needs currently and hope for continued improvement.
#teamjeffgallagher