Lori began experiencing some mild vision changes in mid-December, began getting regular headaches and started running low-grade fevers at night. In early January, she felt some teeth pain and got checked out at the dentist but he felt it was another sinus infection and suggested she see her Primary care doctor. She used TeleDoc and obtained an abtibiotic that was phoned into the pharmacy. After a few days of this, she was not feeling any better and obtained a second antibiotic along with prednisone. The antibiotic was very hard on her stomach and she discontinued it, but the prednisone seemed to help her symptoms more. She and I talked daily and she had some symptoms of numbness along her cheek , top of ear and in her scalp that would come and go. There was also a day where she couldn't taste mustard or Dr Pepper. She has had 3 or 4 Covid tests and they've all been negative. On 1/23 she went to urgent care because of mild drooping on the right side of her face and she was sent to the ER. The ER took a sinus CT image and it revealed that she has a mass in her face about 1 cm. in diameter. This is at the bottom of the eye orbit.
She was referred to a Maxillifacial Surgeon and was told she had to wait a month before the first Dr would be available. This wasn't acceptable and she made an appointment with her primary care dr on 2/3 so she could get a better understanding of her imaging and bloodwork. I was on speaker for this appointment and her Dr shared the details of the image & that her white blood cell count was elevated. She knew of a good Maxillifacial surgeon and sent a referral to him. She was able to get an appointment on 2/8.
At this appointment, the imaging from the ER was not sent to this surgeon, so he took his own imaging in the office. I was put on Speaker for this appointment and the doctor explained that he was not the best surgeon for this type of situation. He explained that the tumor was actually fused to the bone and referred her to Dr. Cusano at St. Joe's Cancer Center. He knows him personally and texted him that she would be requesting an appointment. She collected a copy of the imaging and the notes from him, and spent the next day gathering as much medical history and imaging from the past month (and beyond) to hand deliver to Dr Cusano. Hours after she delivered this bundle to his office, she was called back to schedule. They explain that they usually requirs a biopsy to be done first but based on the notes, she could be seen on 2/16. They allowed Lori one person to attend this 9:30 appointment so I went with her. On our way, they called to reschedule it to 11:30 as this dr had an emergency surgery. We stopped for coffee and walked a little by Tempe Town Lake. I am including pictures from that short detour.
We finally got in to see this Dr and he could only review the imaging from 1/23, as there was special software rsquired to decrypt the second image done 2/8. He explained that Lori will need to get a biopsy under general anesthesia going through the gumline. It was scheduled for 2/22 then a follow up appointment the week after to discuss pathology. He told us that based on the 1/23 imaging, this tumor originated at the eye orbit where the nerve emerges and is through the sinus cavity, reaching the ocular floor. The concerning bit for Lori is that she was noticing a substantial change in the size of the swelling in her face and her vision (especially in the aftsrnoons when she was fatigued) and that she noticed it was palpable in her gumline a week before.
In preparing for this biopsy, she had to visit St. Joes for a self administered Covid test and some bloodwork. She sent me a picture of the desk of the lady who was doing her pre-op paperwork. Her name was Vanetta and her birthday is 7/10 (meaningful because our Grandma Vann (Vanetta) also had a bidthday 7/10)
Sunday, 2/21, she had a very rough night sleep and had an awful headache and started seeing double. She went to an early lunch with Bret but when the food came, she felt her heart fluttering and weakness on her left side. As she started to tell Bret she wasn't well, she was slurring her speech. He helped her to her feet and she had a hard time walking to the car. he brought her to Mercy Hospital (a Dignity Health partner of St. Joe's) and they dis a CT Scan with contrast. It was determined that she has a sizable bleed in the right side of her head.
Lori chose for me to be her Medical POA, and when I arrived at Mercy, I was asked if she wanted to be transferred to St. Joe's (Barrow's Neurological) and I told them to do it.
She was transferred to their Neuroscience ICU last night. She had better motor control and strength in her left hand/arm and left foot/leg than earlier and she has full cognitive function. She was still slurring her speech and her left eye is slower to blink. She got an MRI and a CT that shows the vessels. We are awaiting the results. The neurologist on duty last night strongly suspects that this tumor has caused the brain to bleed.
St Joe's Visiting rules are quite strict, allowing only one family member in any 24 hour period for the visiting hours of 4pm-8pm only. I rode in the ambulance with her there last night and stayed while they got her registered and setteled into her room. I left when they took her to MRI. She was scared but relieved to be in such capable care. She had an uneventful night and was given Tylenol a couple of times for the headache (a 6 out of 10 in pain) but they are holding off on anything stronger as they don't want her Neurological function baseline to change.
I will update with the results of the diagnostics and the plan moving forward as I get it.
