Clean Room

A large orange sign greeted me as I entered Mom's hospital room.

"Neutropenic Precautions. Wear Mask and Gloves"

Her nurse, Detra, was standing over the bed, drawing blood. Mom was awake and alert, greeting me with a tired "hello..."

Next, Detra explained to Mom that she was getting a Neupogen injection in her abdomen in an attempt to boost her nearly bankrupt white blood cells.

The "rash" Dad had mentioned was nothing like any rash I've ever seen. Angry, red skin with bulbous, yellow blisters reach from her throat down her shoulder onto her arm and chest. Nasty, alien stuff.

"Dr. George thinks it may be Shingles," Dad explained. "He says it may not be Shingles, but we're going to treat it as if it were."

Treating it means taking Acyclovir, the same drug administered for Herpes and Varicella. Viral, Mom could have picked it up just about anywhere. Her depleted white cells make her vulnerable to just about anything, so it could have been as simple as pushing a shopping cart that had just been used by a customer with a toddler who had recently gotten the Chicken Pox vaccination.

It also means that we can pick it up from her, which, aside from not sharing any of our own germs,  is one of the reasons everyone has to glove and mask up in her room.

"Mom, do you mind if I take a picture of your skin? I won't get your face in the photo -- just this area."

As I moved the sleeve of her gown, I asked her when she noticed the rash.

"I mentioned something about it to Dr. George last week," she replied. "It was just bothering me a little, but he said it wasn't a rash yet."

"Well, it's something now," I laughed. "I don't know what to call this."

Rules of the Room

There are other rules for Room 430 at Seton Hospital: No fresh fruit or raw vegetables. No flowers or plants. Funny that when her dinner tray arrived, the main plate was fresh fruit.

Without having spoken with her oncologist, my best guess is that she's here to get hydrated and to build up her white blood cells. And to get rid of that angry skin. She's also potassium and magnesium-deficient, and is mostly likely anemic.

She's getting Lyrica for the nerve pain associated with Shingles and IV Cephalosporin -- a broad spectrum antibiotic to ward off further infection.

It's a quiet night at the hospital. I watch Mom from across the room. She's sleeping quietly and appears comfortable and still. No fidgeting and no talking in her sleep, the way she often does at home. I think about staying the night -- the couch is like a futon -- but over dinner, Dad kept telling me there was no reason to stay at the hospital, that I should just come back to the house.

I look over at her again. Her leg twitches underneath the covers, and the IV monitor clicks as it meters its next drip through. I decide to drive home and be back by 6:30, to be sure I catch Dr. George on his morning rounds.

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...

Connections and Updates

Being here on the weekends gives my dad a break from being mom's primary caretaker. As she sleeps in the living room recliner, he sits at his computer in the waning daylight, reading and responding to e-mail.

My dad has a lot of friends and acquaintances, so it's no surprise that his inbox is full of sincere inquiries about my mom's health and messages offering caring and support.

In the upscale, "active adult" community where my parents live, aging, illness and death are not sugarcoated. It's part of everyday life here, so the notes from friends and neighbors here are gentle, but candid, because most of them have been through the experience and understand. 

My dad responds to each one, with the latest updates and information about my mom. His words are more realistic than hopeful. Some people might cut and paste to avoid having to relay the same information over and over again, but for him, I think composing each e-mail individually is part of what he needs to do right now. He's preparing himself for what he sees as the logical conclusion to this episode and if he talks about it and writes about it enough, maybe he thinks he'll be better prepared.

As caregiver, he hasn't been getting out of the house for his normal activities and routines, so e-mail is his outside connection right now. But because most of the e-mail he's receiving/responding to is about my mom, I wonder if the constant reading and responding to the same questions and concerns is taking him far enough away from this for the break he needs? 

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."