Because the important moments in life just don’t fit in a status update! I started this blog when I was training for my first ½ Ironman, (70.3 miles) to record what I hoped would be growth and progress but ended up being a huge learning experience. Although fitness is one of the key ingredients to a happy life, it certainly isn't the only ingredient. My blog has evolved to document growth, progress and setbacks in other areas too. From my surprise proposal in Rome and wedding in the fall of 2013, to Mom's devastating stage IV cancer diagnosis and death 2 weeks after I found out I was pregnant. Who knows what shape it will take, but thanks for being along for the ride.

Monday, August 11, 2014

Occam's Razor

When you're going through a tough time, waking up is the worst, especially in the middle of the night. You have a few precious seconds before it all comes flooding back, and then you remember what you have to get up and face.

I didn't sleep well last night, and woke up several times even though I had a sleep debt from the yard sale this weekend. When I woke up, I worried, and started thinking of all of the what ifs. I got out of bed after about 6 1/2 hours and was so surprised and happy to see Mom awake, sitting up in bed. Dad had given her the morning medication, and she had her coffee beside her and the news on. As tough as everything is right now, waking up with her across the hall from me is a real gift. Things seemed alright.

I noticed a missed call from UC Irvine Medical center, and a message from her neurosurgeon's nurse asking me to call and have her paged. I called her at 9am, and she asked if we lived close and said to come in at 9:30am. I was prepared for the worst. I think we all were.

Before we left, I decided to walk Mom around the block with Trevi. You have to grab those good moments when you have the opportunity. Plus, its good practice for Trevi to get used to walking with a stroller, right? Navigating both of them proved harder than it seemed and when I was a street over, I was relieved to hear  Dad's footsteps behind me, as he took over holding Trevi's leash. Even so, doing this made us 5 minutes late for Mom's appointment.

Those five minutes seemed increasingly insignificant as we waited a half hour, then an hour, then a whole two hours. The four of us filled the tiny office and Nathan and my Dad had a nice banter about solar energy, non-profits and hikers, while I wrapped my arms and a few hospital blankets around Mom's shoulders. Again, she started nodding off.

Her neurosurgeon Dr. Linskey finally came in with news that none of us were expecting: Mom's lesions are small, treatable, and he wants to give her the gamma knife this Wednesday morning. The machine will be on hiatus for three weeks starting Thursday, while they replace the cobalt, so it's important we get her in. He said she has always responded well, and considered one of his "star" patients, with frequent-flyer miles.

It felt like a huge weight was lifted off my chest. My husband and I left after the good news, as Dad was planning to take her home as we had an errand to run. But as quickly as my smile almost appeared, it dissipated when Dad returned and explained that she threw up on the way home. And then she fell asleep again in her chair at 1pm.

At 4:30 a home healthcare company nurse came to conduct an evaluation and hopefully order some equipment to make the house more safe and comfortable for mom. Including, hopefully, a hospital bed. She said that mom's weakness is, in part, due to her inability to keep anything down. But that does not explain her loss of coordination, balance and immobility. Mom faded in and out of sleep while she was here.

Around 7pm, I helped her into bed, and changed her clothes because she did not have the energy for a shower. We laid down on her bed, and put on a murder-mystery. But she was out within about 5 minutes. As I lay there, something hit me, and I sure hope I'm right: Maybe the intrathecal chemo that she receives through a port in her head is causing the sudden onset of symptoms.

I called in Nathan, and then Dad to run this Occam's razor by them. When did her symptoms start? A few days before San Diego. What did we have done before San Diego? Her intrathecal chemo. We held off on the chemo in her thorax, because we wanted her to be able to enjoy the trip. But instead, she got a whole lot worse.

Further evidence to support my theory: Her neuro-oncologist, Dr. Carrillo, told us Friday that these symptoms seem brain-related, not related to the chemo in her thorax. It's been 3-4 weeks since she's had that, and if that was the cause, they should have subsided. He thought it was due to the new lesions. But then today, we meet with Dr. Linskey, her neurosurgeon. He said that her lesions are not causing these symptoms.

Also: Nathan reminded me that Stanford said there is no "real" proof that she even has cancer cells in her spinal fluid! All of her tests have come back inconclusive. Even UCI admits that it is their best guess based on how she is presenting clinically.

Tomorrow, Mom is scheduled for blood work at 9:30am, followed by intrathecal chemo at 10:30. We are going to talk with Dr. Carrillo, but are 99% certain we are going to take a break from this chemo as well to see what happens. Mom was walking two weeks ago. If she could regain some of that mobility and quality of life I would be elated. I was much more upbeat on my nightly walk with Nathan, which we just got back from. Our time was a little faster because there were no breaks due to my crying. This new hope is small, but it's something. I have a feeling I will sleep much more soundly tonight.

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