Whoa it has been a rough month. It started with a blissed out day of warm January kayaking on the 29th of January. I went with my dear friends Patso, Tim, Terry, Matt and Girl Alex. I was feeling great and at the just at the beginning of a 3 week half-strength chemo round. It was sunny beautiful, I paddled a boat I hard never tried and was loving it. Things felt like they couldn't be better. That didn't last.
That evening I started having flu symptoms and proceeded to be sick with fever, cough, sore throat, congestion, vomiting, fever, you name it, for the next two weeks. While I was sick both girls were down with the bug as well, alternating days home from school and needing attention. To top that off, the Chickenhawk, after 6 weeks of no work started back at CODS full time. We need the money so she despite her mothering instincts ovaried up and worked rather than staying home and nursing her brood.
The good news was that during that time I was never admitted to the hospital, I only went to the ER once for fluids and stabilizing of my fever. For a guy with lowered immunity, that is huge.
The bad news, at the end of two weeks of streaming netflix, lots of fluids and anti-nausea meds, the couch time had taken a toll on my body. When I got up and started moving around my back was spasmed to the max. Back to the couch, a wonderful massage from my dear friend Heather Freer, and I was still in pain. A trip to Kaiser for muscle relaxers and another few days on my back, a trip to the chiropractor and here we are at the end of the month and I am just starting to function again.
My body feels as decondtioned as it has in 3 years since the transplant recovery. My blood pressure is low so the simple act of walking can make me dizzy. I have very low aerobic capacity and my back still hurts when I stand for more than 15 minutes. On top of all this I experience extreme fatigue. Tori Robinson described it as wearing a lead suit all the time. I think it is like living in an atmosphere of peanut butter rather than an oxygen mixture. It is just really hard to move around or get any normal task done.
Last weekend the girls went skiing. They had a great time except Dana was hit by not one but three snowboarders. I think it might have been the target she was wearing on her back. Anyway one of the collisions resulted in a bruised knee and now she is back on her crutches and hopping around the house. This is a condition that puts stress on the whole family. Xrays say no break. Dana says she is in pain and refuses to put weight on her leg, the doc says wait two weeks.
You may notice that my tone in writing this is (I'd like to think) uncharacteristically negative. Well yes, yes it is. I took a break from Revlmid and Dex for a week or so while I was sick, now I am back on. Due to the side effects of the Dexamethasone I am experiencing what I can best describe as roid rage. The Rev / Dex therapy includes a high dose of the steroid once a week. Side effects include sleeplessness, manic behavior, and yes, a really awful attitude. My internal conversation is appalling, I am unkind to myself and extremely judgemental of anyone that gets close. I am downright mean to my kids and often disrespectful to my wife. The best way to describe it is to say that I can hardly stand to be around myself. For 24 hours a day 3 days a week, I am the guy at the party that I would attempt to avoid. The good news is that the fatigue is gone for the three days I take the Dex. The bad news is on Tuesday, when the dex goes out of my system, I will experience extreme fatigue that will slowly improve until it is time to start the cycle all over again.
This month has been quite hard on our family. It has gotten to the point where the chickenhawk and I have started talking about our options; Different treatments for me. No treatment for me. Her stopping working so that she can run the family and house and care take while I do treatment, and the question of what do we do for money if she does that. For now we have decided that we are just adapting to yet another "new normal." For now we'll just tough it out and hope for better health for all. Better numbers in my monthly testing and overall good fortune.
I try hard to stay in a place and attitude of gratitude. It has been particularly challenging lately, nonetheless, I'd like to thank Mary Smith, Terry Anderson, Dave Pope, Traci Sheehan, Margrit Petrovsky, Hillary Mulligan, and Kay Osborne for the fabulous meals. Also thanks to Jen Calvin, Tim Madden, Dave Pope, Julie Stanley, Kary Danielson, Dennis Eagan, and Kenna Foster for both dropping by and spreading good cheer as well as running the occasional errand. Also, last but not least thanks to Tommy Anderson for installing a new toilet when our ancient master bath commode stopped working. The spirit and and attitude of our community never stops amazing me even in the depths of a cold miserable February it is as though a warm light is shining on us. Thanks to all for helping with the burden we have to bear.
Thanks for reading.