Hamburgers and Coke

When I came in this morning, Mom was wide awake.

I pulled up a chair next to her bed.

"I feel great," she said. "I'm hungry."

Looking down, I see the hospital's menu in her lap. I pick it up.

"Have you been looking at this?" I asked.

"Yes. I want a hamburger."

"Really? You sound pretty hungry."

"Well, I am, and I don't know why they haven't been bringing me any food!"

"Mom, you weren't eating at all for a few days and you had a couple of tests done yesterday. You're being fed through an IV right now. You won't be able to eat any food until the doctor says it's OK."

She didn't remember that she was being intravenously fed, and she seemed annoyed that she wanted to eat, but couldn't.

"Make sure it has mustard, pickles and onions on it," she said. "And I want a coke."

I reminded her that I would speak with the doctors and find out when she could have a meal.

She's been awake all morning -- a big change from the past week, where she spent increasing amounts of time sleeping or in some sort of delirium.

The nurse comes in and hangs her nutrition bag. It will have to do -- for now.

Colon Blow

When I saw Mom on Monday morning, her eyes were open and her TV was on. We chatted for a few minutes, and I checked the sores on her shoulders, which, though they still looked horrible, looked like they were healing.

The results of Sunday's CAT scan showed an inflamed or slightly enlarged area of the colon. Knowing that she had just had a colonoscopy in May that came out clean, it seemed a good bet that there were no fast-growing tumors. My money was still on fecal impaction.

A gastroenterologist came in the room. He didn't seem to know that she'd just had a colonoscopy or that she'd had problems of this sort in the recent past. He ordered a gastrographic enema -- basically an enema with contrast -- to explore the areas of the colon in question.

Mom's oncologist, Dr. George came in not long after. He explained that the colon has thickened in some areas, and that thickening may be at least part of the reason behind any obstructions. The gastrographic enema would give them some visuals that the CAT scan cannot.

I've since learned that many colon cancer patients who have undergone a colectomy -- where the diseased section of the colon is surgically removed, and the remaining pieces resected -- or patients who continue to live with colon cancer cells in the abdomen, as Mom does, have scar tissue, or adhesions on the colon. Some of the scarring is substantial enough to cause bowel obstructions, either from the scar tissue itself, or the adhesions create a mangled space where passing material becomes increasingly difficult.

Fast Turnaround

My sister, Sarah called me from the airport on Sunday afternoon. 

"Dad just called to tell me that Mom's not doing very well at all," she said. "She's not eating, her abdomen is distended and she's sleeping all of the time. He keeps saying it's the cancer."

I wasn't planning on going back up to Georgetown until Wednesday morning. With interviews and other things on my calendar for Monday and Tuesday, it seemed a practical choice at the time.

"I'm just going back up there today, I said, grabbing my car keys. "I already have my suitcase packed from the last time I was there, so I just need to throw a few things in the car and go. I can do my Monday morning phone interview from there as easily as I can do it anywhere. I'll call you when I get there tonight."

Dad called not long after. "Your mother's not doing well at all...she's not eating, and she's constipated. Her stomach is swollen, and she's delirious," he started.

I reminded him this was exactly what happened last February, when after days of urging, a CAT scan showed a large blockage in the colon.

"But she's had stool softeners, and she's had lots of fluids," he protested. "I'm not going to try to diagnose..."

"Dad, she had stool softeners, enemas -- everything -- the last time, and it still wasn't enough to loosen that blockage. It was high up in the colon, and they had to do some pretty interesting things to go in there to get it."

He was silent for a moment. "I guess your mother was in and out of the hospital several times during those weeks. The details of each visit are a little fuzzy to me now."

"Dad, I'm just going to drive up tonight," I said. "I'll be there after dinner, and we'll talk then."

He sounded surprised, and relieved. His voice told me that he was in no mood to be alone right now, and that his mind was replaying the events of just a few months ago, when he was certain she was too ill to survive.

If It Wasn't So Funny...

Mom was awake and holding a tea cup when I walked in her room this morning.

"There was a...what's it called...I couldn't figure out how to get to my tea," she said. "Finally, I just had to tear it off."

I looked down at her tray, and the torn, opaque drink lid that had covered her cup.

"A good looking young man was in here a little while ago," she said, with a little rise in her voice.

"Oh really?" I said. "Who was he?"

She paused. "I don't know..."

"Was it your doctor?" I asked.

"I don't know why he was here," she mused.

"Did he talk to you? Did you recognize him?"

"Oh, he was very nice," she said.

Just as I realized we wouldn't be getting anywhere with that conversation, Sarah, Mom's nurse, walked in to remove her breakfast tray. She gave Mom her Neupogen injection and dispensed a cupful of medications.

"I want your father to bring my lip balm and my wig," Mom said.

"Why do you want your wig? Is someone coming to visit?"

"Well, I don't know. They might!"

Restless, she puts her glasses on, then takes them off a minute later, only to put them back on again. 

"These are dirty! Can you clean them for me?"

I get up to wash them, and by the time I give them back to her, she's no longer interested.

She rolled to one side and closed her eyes. Dad walked in not long after, and she opened her eyes at the sound of his voice.

She fidgeted with her hands. "My hands are numb," she said, tapping the tips of her fingers against each other. "Whatever they're giving me is making me so tired, and it's making my hands numb."

She pointed to the boxes of exam gloves mounted on the wall. "I've been watching those," she declared. "They change form every time someone take gloves out of the boxes and it's a new shape. I see an Eskimo right now. The middle box says that it's one of the comedy things, you know. Terror. No, not terror. Where they're... it's theater."

"Do you mean comedy and tragedy masks?" I asked.

"Yes. That's it. You know what I'm talking about," she said.

She put her glasses back on and went to sleep.

Comic Relief

A girl with cute cropped hair, khaki bermuda shorts and ballet flats robed up in the doorway.

"Are you family?" she asked as she peered in.

"Yes," I replied, thinking, that if I'm not family, what the HELL am I doing sitting in this room?

She stepped in, looking at Mom, then at us. "I'm a social worker, and I'm here to ask you a few questions. Is that OK?"

We have nothing else to do, so, whatever.

With her yellow paper robe falling fashionably off of one shoulder, she positions her pen atop a form that sits on a thick file she's cradling. Ready to check her boxes, she gets started.

"Are you able to walk?" she asks.

"Well, I don't know...I suppose they could tell you at Clarkson or Methodist..."

Mom a) doesn't understand the question, and b) she's referring to two hospitals in Omaha. The social worker has no idea that Mom has suddenly taken a trip back a few decades and it's not worth explaining.

"Yes, she was walking fine on her own before she got sick," Dad said, knowing that we could move on.

The next questions were about whether Mom is able to drive, whether they have medical insurance and whether they can afford to pay for prescription medications, because if the weren't able to afford prescriptions, "they" could help.

Yes, yes, yes and not necessary. Check, check, check and check.

"Do you have any other questions? Is there anything else I can do for you?"

"Yes," Dad replied. "She wants hair."

Mom stammered. "What? What was the question?"

Dad raised his voice a bit. "Hair, Betty. She's going to give you hair!"

The social worker had this look that said she was in an awkward moment, and had no idea whether it was supposed to be funny. Never mind that I was laughing.

We decided it was time to give her an easy out, and she ducked out the door.

"That was a waste of time," said Dad.

The Conspiracy

A doctor walked in and introduced herself as an Internist. She leaned over to examine Mom's neck and shoulder, and said that the dark spots forming underneath the skin didn't look like Shingles, and said that she wanted to get some cultures from the fluid and measure the sores. 

She left to get her culture swabs, and Mom said matter-of-factly, "They're going to send me to Atlanta. I know it."

"You think the CDC wants you?" I asked.

"Yep."

The doctor told us that her white blood cell count was rising, a good sign. Up to "2" or 2,000 today, it's a big improvement from being told her count was a zero when she was admitted the day before. Normal, or acceptable, the doctor explained, would be about 2.5, or 2,500.

Mom ate her lunch, chatting about her distaste for eating squid and eel, European restaurants, recipes from neighbors and fancy watermelon carving techniques. Satisfied, she reclined and shut her eyes, our cue to leave for our own lunch.

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.

Renegades and Hand Grenades

If you're reading this, you may be aware of a Springtime delay in my blogging. It's not that there was nothing to report -- it's been a busy couple of months. Maybe too busy!

April
My sister Sarah came for a visit with her youngest, Audrey. The boys and I had never met Audrey, so we were eager to spend time with them.

Next, my mom's lifelong friend, Margie, came for a visit with her daughter, Monique. It was their first trip to visit my parents since they moved to Texas.

Mom was feeling and looking great, making it harder to believe that just a few weeks earlier, she was as ill and weak as she was. Or that she is ill at all.

May
Mom had another CT scan the first week of May, which prompted a colonoscopy the following week. The boys and I spent Mothers Day weekend with my parents, and we were all worried that maybe the CT scan had shown something, but the colonoscopy came out normal, meaning they found nothing abnormal in the colon.

I wonder if my parents think they've told me stuff. Mom called yesterday afternoon and in her chatty discourse on random topics, she started talking about her new chemo drugs, and whether she'll tolerate them, and how her oncologist told her this treatment he'd started her on was the last on the list, so to speak.

What!?!

The last I'd heard, she was going back on Xeloda. It appears I am not up to date. So, I ask her which drugs she's on.

"I don't know," she drawled. "Your father writes it all down and keeps track of everything I'm taking. You'll have to ask him."

So she puts dad on the phone, who gives me the download, though I'm not sure of the chronology of it all. So, in no particular order...

A lymph node that had enlarged at some point in the past, then reduced, had enlarged again. I didn't think to ask why they don't just remove the renegade lymph node...I only thought about it after I hung up the phone.

New Direction
Mom's oncologist had originally thought that putting mom back on Xeloda was the way to go, but he changed his mind and instead decided to try a combination of chemo drugs: Irinotecan, also known as CPT-11, as well as Erbetux® Both are drugs designed specifically for metastatic colon cancer, or colon cancer that has spread to other parts of the body, or cancers that have not responded to other treatments. Each is delivered via a separate IV infusion, though she receives them both at the same time.

The list of side effects for Erbetux is pretty lengthy, but here are a few:

• Fatigue
• Skin irritation
• Diarrhea
• Nausea
• Electrolyte depletion
• Decreased white cell count
• Kidney failure
• Lung disease
• Blood clots

Though the possible side-effects for CPT-11 don't include major organ damage or failure, many of them duplicate side-effects of Erbetux, meaning mom may get a double-whammy on some reactions. Here is the (abridged) CPT-11 list:

• Constipation
• Shortness of breath
• Insomnia
• Cough
• Headache
• Dehydration
• Chills
• Skin rash
• Mouth sores
• Heartburn
• Swelling of feet and ankles

Mom is still waiting to see how she tolerates the new drugs. She doesn't like having to sit at the hospital for most of the day on her infusion days.

"The oncologist said we could try going to MD Anderson," mom said. "He said if these two drugs don't work out, he's out of options for me."

She's referring to the MD Anderson Cancer Center in Houston. One of the largest cancer research and treatment centers in the world, there are opportunities for new and experimental treatments or to become part of clinical trials that a clinic of its scope is afforded.

She balks at the idea of transiting between Georgetown and Houston -- about a four-hour drive each way. I suggest that she get her doctor's opinion of the Cancer Therapy & Research Center (CTRC) in San Antonio. Both are connected to a university hopsital system, meaning that they are teaching and research centers. She would have similar opportunities at CTRC -- maybe even better chances of getting selected to participate in clinical trials, if her options have narrowed to that point. And, she could stay with me and the boys, instead of an impersonal patient suite.

The idea that there may not be many choices left makes mom wonder what she will choose. She's seen her share of friends either suffer endless treatments and their side effects right to the end, or friends who have made peace with Fate and choose quality of life over the poison of chemo and radiation for the time they have left.

"It's your decision, mom," I tell her. "We can all have an opinion, and you can look to the experiences of people you know who decided to go one way or the other, but you need to remember that everyone's experience is different. What happened to someone else may not happen to you. It's your decision."

"I suppose you're right," she replied thoughtfully.

"You're feeling great. There's no reason for you to think that it's time to stop fighting this now," I said. "Let's just see how you do with these new drugs. You might tolerate this pretty well, and you may see some improvement."

"I am feeling great," she replied, her voice brighter, and a little higher.