New therapy, more grace

Tue 09/18/07
Yesterday was the toughest day we've had in a while. Susan said if you ask her what she did on Monday, she'll say she threw up. All day. Her nausea and vomiting persisted from morning till night as pill and suppository were unable to ebb the tide. The culprit was decadron, or lack of it, as Susan's body needs the steroid to fend off brain swelling while she's having radiation therapy. Without it, as we discovered, her head pain soared, nausea took hold, and high fever emerged, up to 102F last night. Thankfully, we were able to have anti-nausea meds take hold and phase in decadron and vicodin – allowing her to hold down liquids and some food, break the fever, and suppress pain. These drugs are simply a part of life for now. I'm frustrated that her recent hospital discharge instructions had me get her off the steroid when she clearly needs it. In the future I will not assume that every MD is prescribing correctly or coordinating treatment properly with Susan's neuro-oncologist.

Wed 09/19/07
Susan had her speech therapy evaluation today at LB Memorial. As it happened, our dear friends Jeff & Jayne Nord were there also for Jeff's evaluation following his radiation and chemotherapy. With Jeff's and Susan's brain tumors being diagnosed weeks apart, their experiences have held much in common. As we greeted each other in the lobby with hugs all around among our memory-impaired spouses, Jayne and I decided we are quite a couple of couples. Susan's speech therapist was amazed at how much she's been through as well as impressed with how much she's improved since early July. We traced the complexity of her condition with vision, color, and memory deficits interacting with word confusion – she some ground to cover. We were encouraged to expect gains in her ability to adapt to permanent weaknesses, but moreover that her neurological wiring will actually reconnect over the coming weeks of therapy. The brain is amazing. We also got a reality check in realizing her condition could take a couple of years to improve to pre-tumor status (assuming tumor is held at bay). In the short term, she may struggle against radiation and the coming chemotherapy. Meanwhile, I'm processing her application for Social Security disability benefits, and I'm eager to have her vision evaluated for acuity and low vision therapy within about ten days.
Late this afternoon as Susan got ready for a nap, she dislodged her sandals and asked for her "bedtime slippers," a pair of ankle-high pink suede jobs with fleece lining. My wife, the nemesis of cold feet, said "whoever invented them deserves a ticket to heaven."

I was in a grumbly mood on Sunday as I stopped at Arco to fuel the car, grateful for the gift card I was using from a loving friend, but feeling burdened about our circumstances and bummed that this was our last gas card. A man pulled in along the same island, got out of his car, and asked me if I had an extra dollar or two for gas. I declined him – truthfully, since I had a twenty or so but no singles. He proceeded to hit up several others as he made his way to the cashier. I grumbled to myself – there sits my wife in the passenger seat with her big scalp scar and uncertain future and I'm on unpaid leave right now – and wallowed in my thoughts for a few minutes as the tank nearly filled.
Then I realized whatever money the no-cash guy had mustered only bought him a thin minute or two at his pump. My pump totaled about $36 and our car was full, leaving about $14 on the card. My heart softened as from the Lord when I considered I just received a full tank of gas at someone else's expense and I surely could share out of my abundance. I offered the card to the no-cash guy and exchanged a "God bless you" with him. I felt better, not so grumbly. And then...the next day, we received a beautiful greeting card with TWO more Arco cards, and another one today along with one for groceries. It's crazy. That's God for you.