I’m sitting in a bar alone, drinking beer, with the Denver – Baltimore football game playing, while I work on a gigantic calzone, checking my email, and IMing with Mike, in Spokane. I’m a little lonely and it’s been a helluva week. Mom has been in the hospital for six days. I flew up on Saturday morning when we thought she had a tumor, and the neurosurgeon told her to call her family. I flew home that same day when we learned she wasn’t dying. I drove back to Spokane on Monday after talking to her about death and her assets a lot on Sunday and learning she was undergoing a brain biopsy. I missed seeing her before the biopsy and spent a fair amount of time alone in the dark in the surgery waiting room on Labor Day. Her neurosurgeon later came to tell me that brain surgery was successful, and he didn’t think it was a tumor but only the pathology tests would tell.
Since then, we spent three days in ICU, gowning and gloving up every time we wanted to visit with her. I spent hours in the waiting room playing stupid computer games, because I couldn’t think to read email, and talking to a mother whose 24 year old son was hit by her other son in a brotherly fight. The hit struck wrong, causing her son to black out and his head to bounce off the pavement. He was Lifeflighted to the hospital with brain swelling, and his mom was not only concerned about him but concerned about her other son who was sitting in jail and may hurt himself when he found out what he did to his brother. We initially connected over the amazing neurosurgeon who helped both our family members over the holiday weekend. She is a strong, strong woman who I only saw crack when her son was transferred to the Neurology floor and she told me that the previous tough-guy son was asking for his “Mommy”. While her son was in ICU with a tube sticking out of the hole in his skull from surgery, she bought a Pocket Angel and gave it to a Russian family in ICU whose family member was in a motorcycle v. vehicle collision and things were not looking good. ICU was not great.
But we met Marcy in ICU who was the most amazing nurse. She really liked mom, said mom was sweet and treated her like her own mother. Marcy accepted no guff and told me everything that happened, including mom’s rough night after her surgery where mom was scared and security had to be called to calm her down and that during mom’s hallucinations she said things that triggered a visit from Social Services. Marcy was part of our team. I was sad to move to the Neurology Floor and away from Marcy.
We’ve seen a neurosurgeon, two neurologists, a rheumatologist, a social worker, a physical therapist, an occupational and speech therapist, a pathologist (who we haven’t met), and Dr. Huang. Dr. Huang speaks “physician” and, at first, I wasn’t sure about him probably because I didn’t understand his high level descriptions. Also, mom’s neurosurgeon and first neurologist were so personable that I was only lukewarm about Dr. Huang. Boy, was I wrong. He really cares about her. He is her internist, and I really trust him. I’m sad he is taking these next few days off because I have anxiety that I’d like to talk to him about. He saved mom from going through an unnecessary angiogram, recommended by the only physician in her entire entourage that I’m not fond of, her second neurologist. He calls me on my cell to tell me updates that I miss and calls me by name and tells me everything, even the scary stuff. That’s great.
Today, the rheumatologist told us it wasn’t likely vasculitis. Dang. In six days, we’ve ruled out a brain tumor and cancer and can only limit it to autoimmune. Her brain biopsy wasn’t definitive maybe because of medication for a pre-existing condition. Her first and great neurologist recommended a second opinion at UW if we don’t get a definite diagnosis after pathology tests, and I’m afraid we are heading that direction. I only hope Dr. Huang’s replacement is as good as him so I can talk to him/her about this. For some reason, my gut tells me that going to Seattle won’t help. I know UW Harborview has amazing physicians, because my uncle Mike (a physical therapist in Spokane, who knows the industry) visited mom and said they were top notch, just like the great neurologist whose name I can’t remember said. But, Sacred Heart in Spokane has really shown to care about mom, and their physicians have met my expectations and treated mom like a human (except for the second neurologist). I will certainly ask for the second opinion if it comes to that but I don’t think Mom will be as comfortable in Seattle, away from “home”.
Mom’s speech is coming back but she still struggles for words when she is tired or anxious. Yesterday, she spoke fluently and without much difficulty but we may have pushed it because today was tougher for her. She was not as peppy and she wasn’t great at her occupational therapy visit and her speech was broken. She does have an awesome 4-5″ scar on the back of her head from the surgery. She gets tired easily, can barely remember what her physicians tell her when I missed them and ask her what they said, but she is strong and amazing. She takes each test and event in stride. She barely flinched when she returned from the spinal tap, showing just that she was tired. I saw her as soon as they would let me after brain surgery, and she smiled and joked with me and the nurse. She continued to joke and laugh and be herself throughout her time in ICU. She expressed fear to me only twice, when she thought it was a tumor and tonight when we talked about her rehab and what would happen after the hospital. I could only hope to be half as strong as my mom.
Rick flew up on Tuesday. He has been a rock star. We’ve hung out for two days straight. This is the best we’ve gotten along since we were kids. There’s an issue I can’t discuss at the moment (maybe later) but Rick has helped and offered an invaluable opinion. Interestingly, he has the same opinion as Mike on the issue so I am the only alternate, not contrary, view. It’s comforting to have both of them with such strong opinions. But, back to the point, I’m enjoying spending time with my brother, which is a new feeling.
On a lighter note, mom saw aliens while going under the anesthesia, a young woman in the waiting room told me that the Revelations has begun and the world is ending because Obama wants to start a war with Syria and then she tried to sell me a Vitamix (before she went to talk to the doctors about how they should try it), and I flew virtually over Mt. St. Helens at sunset with the smoke from forest fires making the sunset a truly incredible sight. My partners and workmates have been amazingly supportive at a particularly tough time in the office. I honestly don’t know what I’d do without them. Work still causes me anxiety and I check my email and call attorneys as needed, by my partners and friends have taken on my burden. I am truly, truly lucky to have them.
Mike is getting worried about me hanging out in the bar after 9:00 at night, drinking beer alone. Isn’t he the best? He’s been my rock, even in Portland. He listens to my anxieties and fears and frustrations, does research on issues, and offers his unbiased opinions. I honestly don’t know what I’d do without that support. He called today while I was a little down and offered to fly to Spokane and drive back to Portland with me. I didn’t make the connection immediately but, after my call with him, I saw mom and was playful and talkative. I can’t wait to see him tomorrow!
Here’s to a definitive diagnosis, a smooth transition for Mom, and returning to Iris and a Tums-inducing job that I love in Portland. (I’d say returning to Mike but he’s always with me!)
Postscript:
Looking back on that time in our lives, there is more we want to remember. Mike flew up the next day and spent it hanging out with Mom, joking around with my brother, and teaming up on me. Unfortunately, his traveling was yet to begin because they transferred Mom to UW Harborview on Friday. Mike and I drove from Spokane to Seattle that day. On the way over, Mike googled nearby hotels, and we selected a hotel near the hospital with good reviews, Sorrento. We drove straight to the hospital and arrived there in the evening. While we were driving around the hospital, trying to find the entrance and parking, Mike said he recognized it. Apparently, he did a photoshoot there for Planar back in the day. It took us a while to find parking and an entrance and then the neurology department, which was locked. We eventually found a help desk, and they said that transfer patients were checked in at the ER. We spent over an hour in the ER waiting room on a Friday night and, wow, was that entertaining. We saw a couple crazy people, a police officer bringing in someone, a large security guard with a gun who was around most of the time, and several homeless people looking for a place to hang out.
Eventually, we were invited back into the ER itself to see mom. She was in a room closed off by curtains on the sides. A nurse had offered to close the “front” of her room but Mom asked to leave it open so she could watch the action. There were more crazies, people drugged out and screaming and moaning, but no blood that we saw. It was very entertaining. Neurology residents came to see mom and did some tests. One was clearly new and not very good but the other guy was super nice. They said they thought mom had amyloid angiopathy but would need to do further testing. We hung out with mom until 11-ish and then went to our hotel.
The hotel was trendy nice but in an old building so the heat was through a large register and everything was funky and a little fancy. We liked it. The bed was really comfortable though the room was stale. We went to the bar for dinner and had “a moment.” The main kitchen was closed so we ordered an assortment of nice appetizers. We had an asparagus plate, cheese and crackers, and pulled pork sliders. It was delicious. The beer really hit the spot too. There was a table of four and an older couple also present. The older couple made us think of us in many years. The waiter was fantastic. It felt so good to just be together, be healthy and happy and in love, and relax in that nice restaurant talking about nothing important. We were also both more exhausted than perhaps we had ever been. We both really appreciated what we had in our lives, and we look back at the memory fondly.
On Saturday, the neurologist discussed the amyloid angiopathy possibility with us and Mom. Mike and I went to lunch and googled the diagnosis, which is rather scary to read about. The doctors made it less scary. The UW doctors were much more clinical than in Spokane, and the entire hospital was the same. It was the weekend and Mom wasn’t going to have any tests until the following week, so Mike and I went home. But first, my Aunt Pat called, who I had not talked to in about 10 years. It was nice to talk to her.
Mom ended up getting a super-MRI which revealed the missing brain bleed and confirmed the suspected diagnosis. I drove up to Seattle on Monday to get the diagnosis with her. Mom took it in stride, and I returned to Portland that evening.
It felt fantastic to go to work on Tuesday. I could do something I had some control over and understand and was back in my world. I was definitely out of my world at the hospital. They released Mom on Wednesday, so I drove up early and spent the entire day waiting for her discharge. I was not the most patient daughter that day. Mom spent 13 days in the hospital.
I drove Mom back to Portland, where she spent the rest of that week and the following week with us. She initially intended to fly to Colorado that first weekend, but there was emergency flooding in Boulder that weekend. We turned the dining room area into a bedroom, and that worked very well. It was nice to spend time with Mom and that she got to spend time with and know Mike better.
