From One Day to the Next

Mom began her new chemo regimen June 3. A simultaneous infusion of CPT-11 and Erbitux, every Wednesday. But, after that first dual infusion, she only received the Erbitux the following three Wednesdays, because her white blood cell count has been too low. Last Wednesday, she got the dual infusion of both drugs again.

Mom felt fine the next day, but by Friday morning, she didn't get out of bed. She had no appetite or energy. By Saturday, she'd developed a fleshy rash on her neck, shoulder and chest.

All are side effects of the chemo -- so it's not unexpected. But without mentioning it, I know that Dad is thinking that this is a replay of last January and February.

"Your mother asked me to give Margie a cup of tea," Dad said over the phone. "I said, 'Margie who?' Your mother said, 'Margie Johnson.' I told her Margie was here a few weeks ago, but she's gone home."

Again, she seems to be unaware of time/space/surroundings.

"Dad, I've got some time the rest of this week. Why don't I come up to Georgetown?"

"That sounds like a good idea," he said.

Dad called back about 15 minutes later to say that he'd called Mom's oncologist about having her come in. Dr. George, concerned that she may be too fragile to stay at home or make the clinic visit, instead told dad he'd admit her to Seton Hospital in Round Rock.

"I just wanted to let you know that I'm getting ready to take her over there now, and that's where I'll be if you're coming up." he said. "You know where Seton Hospital is?"

"Let me wrap a few work things up and pack a bag," I replied. "I'll call you from the road."

He seemed relieved that I'd be able to come up so quickly, I thought to myself. With her last episode so fresh in his memory, I think he's dreading a replay. Those weeks were so stressful on him -- he was trying to care for her and prepare himself for the worst at the same time. Her recovery was just as sudden and mysterious as whatever afflicted her. You just never know what will happen from one day to the next.

A New Cycle

Finally strong enough again to give chemo another shot, Mom started back on Xeloda this week. This time, she's one a one week on, one week off cycle.

Back into their normal routine, dad is still cautious and a little left of optimistic, but his stress level is way back into the managable zone. He's getting out to do all of the "things" he does and when I asked him for some help digging up some old documents, he jumped at the chance, and couldn't wait to hang up the phone so he could get started. A month ago, a request like that would have been about the same as asking him to drive an auger through his skull.
Life stuff has kept me from getting up to see them the past couple of weeks. I feel like I'm slipping back into complacency and a little guilty that as soon as mom's health turned back around, I got on with whatever it was I have going on.

I'm hopeful that this time she'll feel good enough to make a short trip to San Antonio, or maybe to the coast. The last time we went to Port Aransas with them, Owen was about 6 months old. He's 5 now...

The Start of a New Week

Monday. Mom got up well ahead of her usual 9 a.m. routine - a good sign. Groggy and not necessarily any more aware, she had a little breakfast this morning. The swelling in her abdomen has gone down, not completely, but an improvement from the weekend.

Mom is seeing her oncologist this afternoon. Except for the worst days, I've noticed that she perks up just a little for the doctor visits. Getting out is good for her and she needs the stimulation of movement, the weather and interacting with other people.

She ate a little at lunchtime as well, and she's been taking in some fluids. I reminded dad to tell the oncologist to prescribe something for her pain.

I'm hoping that this is a nasty chapter for her, and nothing else. Chemo takes people to the edge and brings them back all the time. I don't know what toll the weeks of malnutrition and dehydration have done to her.

Dad is guarded. I don't think he wants to allow for optimism at this point. It's hard to be swinging on that pendulum, knowing that eventually, disappointment and more rough times can be just a mere shift in the wind.

Three Weeks

"I won't beat around the bush. It's the colon cancer that's causing these stomach pains and contributing to what's happening with you right now."

That's Sarah, the Home Health Nurse who has come by to check on my mom this afternoon, and "what's happening" is that my mom has not been eating or drinking more than a nibble and a sip here and there for the past three weeks. She's dehydrated and malnourished, bruised and terribly small. In fact, her smallness seems strange to me. My mom has always been that sort of average height/weight and right now, she's a shriveled version of herself.

She started taking Xeloda, a potent chemo drug in pill form, last December. When the oncologist recommended the switch from infusion chemotherapy, mom was excited about the convenience of taking a pill, instead of being attached to the pack that was plugged into her port for each treatment. She was happy; she felt energetic and she was looking forward to spending New Year's in Denver with my sister and her family. She never mentioned that Xeloda is prescribed when infusion chemo isn't doing the job. I wonder if she understood that when the doctor made the change.

After only a couple of week-long treatment rounds, Xeloda made good on every published side effect: By mid-January, she was plagued by mouth sores, fatigue, weakness, stomach irritation, diarrhea, bruising. The dehydration and malnutrition is doing its job on her brain. She's confused, random, she sees people and things that aren't there. She wants to sleep all the time.

The nurse tells mom she needs to drink a lot more water. Mom says to her, "I can't. They told me not to do that." The nurse says, "Who told you not to drink water?" Mom replies, voice slightly slurred from her massive drymouth, yet resolute, completely convinced that she is making sense. "They told me it is very dangerous to mix anything with my medications. That's why I can't drink water."

Later, I sit on the edge of her bed.

"Mom...it's me. I'm just checking on you."

"I can't....I..." She runs her tongue around her parched lips, more orange than pink. She turns her tongue in toward her cheek.

"What is it, mom?"

"It's my left cheek."

"What about your left cheek, mom?"

"I'm taking a class. What time does it start?"

"Don't worry about that right now, mom."

"Who is here in the bed with me?"

"Mom, nobody else is here. It's you, me and the cat."