A bit of a lift

Susan seemed a bit more with it this morning and had more energy. Even though she wore down and regressed again as the day went on, I was grateful for the lift because everything’s been going so one-way lately. She spent the evening with her parents and Lexie while the boys and I went to the Angel game courtesy of a client of mine. We enjoyed the outing and the relaxed ballpark atmosphere along with Big-Bang Friday fireworks after the game. Sue’s parents took her to Sizzler for dinner where she had trouble focusing on eating except when it came to dessert. It’s amazing how soft serve ice cream requires no prompting.

Coming home after my evening of respite with the boys, the reality of Susan’s illness returned and weighed on me again as we lay down again at bedtime. I said,

I’m glad I married you. (I’m glad I married you, honey.) I’m glad I met you. (I am too.) You’re my best friend. (I’m glad.) You’ve always been a good helper for me. (That’s what I was supposed to be.) Are you going to leave me? (What kind of question is that?) Are you going to die? (That’s not the sense that I have.) I’m glad. Do you believe Jesus can heal you? (Yes. Do you?) Yes. I know He can. (We’ll just ask Him to heal me.) Yes, we’ll keep on asking. I’ve been troubled with not knowing what will happen. But it’s not for me to know. Colossians 3 says “Set your hearts on things above, where Christ is seated at the right hand of God.” Psalm 27 says “Wait for the Lord; be strong and take heart and wait for the Lord.” So that’s what we’re going to keep doing – we’ll set our hearts on things above and wait for the Lord. He knows what to do. (Ok. That’s what we’ll do.)

Tough day, lucid night

This was the toughest day for Susan in a long time, with still lower levels of alertness, memory, strength, and stamina. I’m glad we didn’t have anywhere to go today. Our friend Gladys Halma visited this morning – Susan was barely awake when Gladys arrived at 9am. After breakfast, Gladys helped Susan play a game of solitaire, a vision therapy activity that helps her with scanning and sequencing. Later, after Susan’s shower and long afternoon nap, her mom arrived to take Austin to finish his DMV written exam. (He passed!). Helen brought us some early dinner afterward since the kids were leaving for Adam’s final choir concert of the year. Susan and I had to forego this one. After dinner it took me at least 10 minutes to convince Susan to take the 8 or so essential pills she needs morning and evening. It was hard to get Susan to concentrate on what I was saying and to respond. It upset Helen deeply to see her daughter doing so poorly. I know what it’s like to feel helpless about a situation you desperately want to change, but I can’t imagine a mother’s pain.

Somehow, Susan and I can manage to have lucid, loving conversation when we’re lying in bed at night after prayer before she goes to sleep. In the dark room with our heads touching as we hold hands and share her pillow, a bit of our old life returns. Her voice sounds the same as it always did. I can’t see her scar, short hair, or puffy face. There’s no deep dialog. We just exchange simple, caring words, so it feels the same as before she had cancer. But the fact of it is never far away. The uncertainty is a burden. I said,

I’m glad I have you. But I don’t know how long I’ll have you. (I don’t know either.) Are you scared? (No.) That’s good. Are you satisfied? (Yes. I have you.) I’m glad we have each other.

Slo-mo and chemo

I need to help Susan with everything right now. Dressing, bathing, brushing teeth, having meals, getting around the house – every activity is broken down into steps that require great amounts of coaxing or me to do them for her. She’s on super-slow motion, 6x, 10x. I’m adjusting to her slower pace and trying to be patient during the 10-20 second intervals before she acknowledges what I’ve said. Sometimes it doesn’t stick and I have to repeat it. Now I know why Dr Liau says brain cancer is a devastating disease. Fatality is one thing, but the loss of function is a killer too.

We arrived at UCLA and shuffled into the Jonsson Cancer Center waiting room about 15 minutes late, a normal thing these days. We didn’t get called in for Susan’s blood draw until almost 2pm, which delayed her 2pm infusion until lab results came in. Her blood work was ok, so she started her infusions about 3:30pm and had an exam by Dr Nghiemphu. She noted Susan’s swelling and disorientation (didn’t know the day, month or date), and suspects decadron is the culprit. As much good as the steroid does for brain swelling, it can cause degenerative symptoms once the swelling abates. It’s a balancing act. She reduced Susan’s dose from 12mg to 8mg for now and moved up her next MRI by two weeks to 6/23, after having two doses of Avastin.

Regression

Susan’s exhaustion and weakness intensified today. I stayed around this morning to assist and observe her, trying to determine what level of help she needs. I’m not comfortable to leave her with our friends from church since they’re used to doing errands, activities, and exercises with her and not the greater demands of lifting and hygiene. Susan is not like she was two months ago, at least for now. Her condition became more evident when Sheryl Vos arrived for her Monday visit and took Susan to the chiropractor. Susan could not get down our steps without help and could barely lift herself into Sheryl’s SUV. I called Dr Nghiemphu while they were gone. As I described Susan’s state of being, we tried to reason together whether her symptoms are coming from tumor growth or drugs. She really needs to see her for a proper evaluation, but she thinks it can wait until Wednesday at the time of the next infusion. She said I should not reduce her decadron dose yet. Meanwhile, I need to attend to my wife at home. I called the office to clear my schedule until later in the week.