Today started out a little bumpy.
6:00 Chloe was in the kitchen prepping the dog food. The sound of kibble hitting the bowl generally send our giant hunk of blind “Buttercup” love crashing from Doug’s bedside down the hall but not so this morning. Mamma instinct kicked in and I said, “Should we check her” as Doug was saying, “C’mon Butters time for Breakfast”. She lifted her head a little and laid it back down. I ran for the kitchen and the blood sugar test kit, a box of Peanut Butter dog treats and a bottle of Karo Syrup. Quick Blood draw from her elbow callus confirmed what we already knew – Butters was in the danger zone. Blood Sugar = 23.
7:45 Dropped Chloe off at school
8:00 Breakfast with Doug’s best friend’s parents from Oregon and their friends
9:00 drove 125 miles to UC Irvine for the clinical trial appointment and found out Doug needed to be on Rilutek for 30 days PRIOR to starting the study. Whoops. Somehow four people missed that fact (myself included). I cried of course. I cried because I am filled with optimism most times and I have a lot of hope. I LIKE being the cheerleader. I LIKE rallying the team towards the next milestone. I felt like the air got let out of my tires. I have been building this thing up and now here we are a couple hours away from home at Wally World and John Candy is standing here saying, “Sorry folks, parks closed”. That’s a Vacation reference for you kids – a 1983 movie with Chevy Chase… The visit was not a loss though. We got our 2nd opinion from Dr. Mozaffar who seemed quite knowledgeable and encouraged us to email him directly (3 sentences or less – ha ha). Yes, Doug has ALS. There seems to be significant muscle strength loss in the left hand/arm in just a couple of months.
We got other useful information. Doug should be on Rilutek now. The newer studies show that life expectancy can be improved by up to 24 months (we were originally told 90 days). No, Doug should not go on the Atkins diet (this was HIS idea not any doctors advice). The doctor said he should increase his protein and fats by about 20 to 25% to make up for the muscle loss. He said weight loss can actually speed up the progression of the respiratory decline. Doug asked the doctor for confirmation of what I’ve been telling people about a person’s trajectory that it usually stays consistent through their disease. Meaning if you start progressing slowly you will likely stay at a slow pace, and if you start out of the gates quickly you will likely continue to decline rapidly. The doc confirmed that. He said that Doug appears to be progressing slowly (Thank you Jesus). We made an appointment for his first MDA/ALS Clinic visit where he will meet people in different specialties.
I cried a little more on the way to Starbucks and a little more on the way home. By Riverside I was where I am now, that this just wasn’t meant to be. I can give you a dozen things that have already popped in my head but there is no point. It just wasn’t meant to be. There are two more studies coming in May. Although I left disappointed about this particular study I actually left feeling more hope about Doug’s progression and the Rilutek.
Some loan stuff came up with the new house and I lost my cool on the loan guy then had to call and apologize. Tonight my Bible Study women were having a get together and I had my friend Cyndi stop at the grocery store so I could pick up chips, dip and soda only to realize I left my wallet at home AFTER my stuff was rung up and bagged. I had to run out and get her….
One of the things I am filled with gratitude for is with 12 hours of stress, disappointment and chaos NO SQISHY HEAD!!! My strength comes from above and from those that surround me. I have an amazing husband, step children, mom, in-laws and friends. And a loving God who wraps his arms around me and takes my burden when I choose to surrender.
