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.

Dish Towels

The phone rings. It's mom.

"I just realized I never thanked you for all of the nice things you brought up here with you," she says, referring to a smorgasbord of household goodies, from a gratin dish to drink coasters to kitchen towels, all placed on a bamboo tray, that I had brought to them in January.  "That was certainly nice of you...you didn't have to do that," she added.

"You're welcome," I laughed. "I felt like I'd missed dad's birthday back in November and Christmas, so it was kind of an all-in-one offering when I came up in January. that's when I brought you your slippers, and the bamboo socks that you haven't been able to wear because your feet were so swollen. And the green blanket."

As she went on about how lovely the dish towels were, I was preserving the recording in my mind. How utterly like her this conversation was. She is most comfortable starting a conversation if she has a reason to begin talking, but once she gets started -- and if dad's not around -- she becomes chatty. It's easy to tell if dad's not home. That's the only time she and I have long phone conversations. There may have been an initial reason for calling, but then we weave through whatever topic jumps in front of us.

"I opened the dishwasher today, and there were glasses and dishes in there from, oh, I don't know, I guess it was before I checked out," she drawls. "There were things in there that I'd been looking for, but I never thought to look in the dishwasher. Your dad always washes everything by hand, so I guess I figured there wouldn't be anything in there. I don't know when we would have used the dishwasher..." her voice trails off. "But...I guess we did," she laughed.

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...

Chemo Democracy

At her last oncologist appointment, Dr. George reiterated his "no new tumor growth" news to mom and dad. Markers still down and feeling better every day, mom seems to be past the worst.

Having my dad there with mom at doctor's appointments is a good idea. If you know my mom, you know her charming ability to sort of float over the details. Ask her for a recap later, and well, she can't quite think of the word, and the conversation goes down this "so-and-so and whatchamacallit" trail. It has nothing to do with age. Trust me. I grew up having to fill in the blanks.

The other side of having dad at the doctor's appointments is that everything comes through his filter. They're quite the pair. She can't think of the word and he's quick to jump in with it, and then he continues with his analysis of...whatever.

So, back to the oncologist. No new tumor growth. Blood markers down. Great. But, the doctor explains, that it's time again to consider treatment choices. This is where mom finds the nearest puffy cloud and fuzzy ear warmers and dad takes over.

Over the phone, they - I mean dad with mom also on the line - lays out the options to me: Return to infusion chemo, possibly trying one or two new cocktails, giving Xeloda another spin or no treatment at all.

I chime in, saying that in my opinion, the "no treatment" option is out the window.  "Mom's feeling so much better now, and there are no new tumors. This isn't the time to say you're done with treatments."

Dad replies matter of factly. "We have some time between now and the next appointment for all of us to talk about the choices and make the decision together."

Really? What? Did I just hear dad open the floor for democratic exchange? How utterly unlike him, I thought to myself. In a good way. It's just that my immediate family isn't known for democratic process or candid exchanges.  

I sense already that mom has defaulted to "whatever your dad thinks is best." I think if I were there I'd have greater influence, but I can't be there all the time. It bugs me that she backs off from some of the most personal decisions she'll ever have to make, and lets someone else come in and tell her what she's going to do. Even if that person is her husband.

He's still thinking that she'll spend the rest of her life weaving in and out of illness and there's nothing that will change that. I don't agree. I'm worried that it's coloring her attitude and her decisions about whether to go back on chemo. Both of them frustrate me. Dad with his dark cloud and mom blithely going along with whatever dad says. I don't know why I let it bother me. This has been their relationship dynamic since Day One.

Talking to mom on the phone, she's in a light mood, and asking a lot of questions about what's going on in my life, and how Isak and Owen are doing. It's been awhile since we've had a chance to talk about life stuff, so it's really nice. I fill her in on all the good, bad and ugly from the past couple of months. In my life, there's always plenty. She's empathetic.

"Are you happy?" she asks me.

Surprised at the question - remember, my family has issues with candor - I paused. "Yes, mom. I am. It's been a crazy year and the boys and I have been through a lot, but everything happens for a reason. I'm still figuring out what I should be learning from all of this, but I'm happy."

"Good," she says firmly. "That's all that matters."

Good Hair Day

The boys and I arrived Saturday afternoon. Mom was lying on the couch, covered with a sage green blanket.

"Hi," she said, as she smiled and shifted a bit, moving the blanket aside.

"Mom, hi! Wow, you look very nice today," noticing that she was dressed in jeans, shirt and peach cardigan. "You're wearing lipstick...and makeup!"

"Well," she drawled. "I have all of this makeup...I just feel like I should wear it."

"Yes, you should." I replied.

She rose up from the couch for a hug.

Mom wanted me to go back into her closet. "I have some things back there that I'd like your advice on," she said.

Back in the closet, she took a seat. "I want you to go through those dresses over there and help me decide which ones I need to get rid of."

As I held up each one, she pretty much told me what she wanted to do with each of them.

We created a section for dresses that would be donated.

She pointed to a pile of folded clothes on the floor. "The aide folds these pajamas, but I guess she doesn't know where they go, so she just leaves the pile right here," she said.

"Do you want to go through these?" I asked.

"No, no I don't. I feel like I wore those things the whole time I was sick...and I'm just tired of them." She paused. "How long was I sick?"

"About a month, mom," I answered.

"A month?" she exclaimed. "I can't believe it. I don't remember anything at all."

"I know. That's OK. There's not much to remember."

"I guess I was in bed sleeping the whole time," she said.

"Yep, pretty much," I replied. "I've been coming up every weekend for the past month or so. Do you remember me coming up?"

"No, I sure don't, but thank you. I'm glad you were here anyway."

"Now, back to the pajamas," I said. What do you want to do with them?"

She tilted her head up, like she was rejecting the pile of clothes. "Get rid of them. They have bad memories."

"So, the pajamas have memories. Are you thinking the pajamas absorbed all the memories of the past month for you?" I joked.

"Yes, I think they must have," she laughed.

"I'll run to the outlet mall and pick up some new pjs for you," I said.

"Good. Your dad wouldn't understand."

"He wouldn't understand that the pajamas absorbed your bad memories, or that you want to get rid of them?" I asked.

"Both."

Dad came home from the store with some donuts for breakfast the next morning. Mom's eyes followed the donuts as he put them the counter.

She pointed at the bag. "I want one of those," she said.

"Mom, those are for breakfast tomorrow."

"I don't care. I want one."

"Let's wait," I suggested.

"OK, but I've got my eye on those donuts," she replied.

At dinner, as dad lit the grill for steaks, mom opened a bag of Fritos and a can of bean dip. Though Florence and I were snacking on them too, I'd have to say mom ate quite a bit of them on her own. As in the basket of chips and new can of bean dip were all gone well before the steaks were on the table.

She ate an 8-oz. steak, baked potato and french bread and had a margarita and ice cream for dessert. No surprise the next morning when her blood sugar was at 251.

At breakfast, she ate more scrambled eggs than I did, ate a cherry turnover, and, as the meal was winding down, pointed to a lone turnover left on the serving plate.

"Is anyone going to eat this?" she asked.

"You are," I said.

"Good. It's just sitting there looking at me, and I couldn't stand it any more," she said, as she bit the corner.

I reminded her that there was still a donut left on the table. "You wanted one of those so badly yesterday I thought I was going to have to lock them up in a vault," I said.

"Well, I've changed my mind. I want this now."

I'm glad we don't have to measure and monitor every bite she's taking now. She laughs in disbelief when we tell her that we had to struggle to get her to take a single bite, and remind her to swallow after she'd been chewing for 20 minutes. Now she's thinking about food all of the time. I remind dad to be mindful of her intake, as her blood sugar is edging up again.

I think that right now, he's thinking that he wants her to eat whatever she wants to eat, blood sugar be damned. I get it. Her body is craving the food because it's trying to rebuild strength. I tell him her appetite should even out in a week or so.

I had mentioned to ear earlier on Sunday that I wanted to take a few pictures with her and the kids. I ran to the store and when I returned, she had put her wig on. I smiled and leaned forward to smooth out one of several stray spikes of hair .

"Mom, where have you been keeping that wig? The hair looks pretty crazy, like you've been sleeping in it."

"Oh, I know. This isn't my good wig," she said. "I need to get this one styled, I guess."

I told her I thought she looked very nice without the wig, and that she shouldn't worry about her hair for the pictures I mentioned earlier.

She insisted on keeping her hair on for pictures. The wig doesn't look at all natural. It's not the hair - though the wig has so much more hair than she does naturally that it just looks weird -- it's more like a fit thing, like the cap sits too high on her skull or something. "She looks like Benny Hill," I thought to myself, as I got everyone together for the picture.

As I stood there with the camera, mom was very in the moment. Taking a picture is such a small thing - not a big deal at all, really, but she realizes that she feels good enough to participate in the activity, so she puts on the hair and smiles a happy smile. A big change from just a couple of weeks ago.

No New Growth

Mom had scans, her first since August. It surprised me that it had been that long. Her oncologist called the next morning - he had already seen the scans, and called to say there was "no new cancer growth."

I was thrilled, but I also had a lot of questions. As in, no new cancer growth since August? As in, what is the recommended course going forward?

I also wondered about my dad. Just a couple of weeks ago, he was certain that her cancer was growing and that this is why she was so ill, and that it would be a fatal episode for her. I kept challenging him, saying there were no scans, no diagnostics to show one way or the other. He had been so firm, so stubborn. What was he thinking now that we had something to work from?

As we talked, he told me about mom's progress. She's eating a little more every day, moving around a little more every day. "She's getting stronger," he said.

"So..what are you thinking you'll do about Hospice?" I asked tentatively.

"I think we've reached the time where Hospice is no longer necessary," he said."She's able to do everything for herself again, so there's really no need to continue."

"I think you're right," I said. "Be sure and mention it to the doctors, and get their concurrence."

"The oncologist has already said it's time to discontinue," he said.

"OK. Well, you know how to handle it. You know what you need to do," I said.

My dad is worried that I've thought he wasn't doing a good enough job as mom's caretaker. Quite the opposite. He's not hard wired to be that attentive, nurturing caregiver type. It doesn't come naturally to him. But he did what needed to be done, and it's not easy to be on call 24x7, to constantly be on alert for midnight wake ups and to constantly worry about her. It's easy to second guess ones self. We all do the best we can.

Sunny Days

After a big breakfast (two eggs and a slice of toast) mom wanted to get dressed. Not switching from one pair of pajamas to the next; she wanted to wear jeans.

"I want you to help me go through my makeup drawer," she said. "I know there's a lot of stuff in there that needs to be thrown away. It's been awhile since I've worn any of it and I should start putting makeup on again."

We spent the rest of the morning choosing something for her to wear and cleaning out her drawer. Whenever there was a pause, she talked about food, talked about the next meal.

At lunch, she ate a thick meatloaf sandwich, chips and fruit. Dad wanted her to drink a glass of tomato juice, but she insisted on a can of orange soda.

After lunch today, mom wanted to sit out the patio. One of the Red Bud trees is getting pink, a contrast to the other trees that aren't budding yet.

"It can't be any colder out there than my feet," she said.

"Mom, give me a minute and I'll join you," I said.

"Nope, she replied. "I'm not going to wait."

She walked to the door, slid it open and started to take a step outside. Then she retreated.

"Too cold?"

"Yep."

She came around to sit down again.

"Are you going to write anything about your sick old mother?" she asked.

"What would you want me to write?"

"That I'm sick. And old."

"You forgot the part about being a mother," I offered.

She sits in her chair with a blanket over her lap, sipping her coffee and staring out the window. Her bare feet are too swollen for socks, and they peek out from under the blanket, toes wiggling.

The cat jumps into her lap and gets comfortable, then jumps down to see what dad is doing in the other room.

I have to leave to drive home soon. My mom, dad and aunt are talking about playing games: Florence wants to play Scrabble, dad says he doesn't like Scrabble. They talk about whether there's a Cribbage game online. They're restless I guess.

I help mom arrange her makeup drawer before I leave, grabbing a cookie and a drink as I go.

Waking Up

Over the weekend, my mom slowly started emerging from her month-long fog. When I called on Sunday, after a few minutes of chatting with dad and hearing that she ate well all weekend, he asked if I wanted to talk with mom. Surprised, I said, "Sure!"

Mom got on the phone and her voice had energy that I hadn't heard in a month. She sounded like herself and she actually carried on a conversation that made sense for for than a minute. She said she felt great, which was really encouraging.

After several minutes, dad took back the phone. "Mom sounded great," I said.

"Dont kid yourself," he said. "That took all her energy."

I felt a little struck down by his pessimism. After all, no matter what the situation is, when you have a good day, you have a good day. I was thinking to myself that it would be nice if he could just say, "Yes, she had a good day, and I'm glad."

When I called on Monday, he gave me the run down of what she'd eaten,how much time she'd spent up and about and I said, cautiously, "It sounds like she's moving around and eating incrementally more every day now."

He didn't say much in response, but I noted that at least it wasn't a negative comment. As my sister said, "From dad, that's as good as a positive response."

Mom doesn't remember much from the past couple of months. She doesn't remember my visits, and she didn't even remember her trip to Colorado over the holidays until my sister reminded her of some of the things they did.

This morning, she said she was tired from her "big day" yesterday, but I can hear in her voice that she's really trying to pull herself out, which is great, because I was feeling like dad had lost his enthusiasm for encouraging her.

No matter the outcome, I want him to be able to think back and know that he did everything he could for her. I don't want his memories of this time in her life to be full of lost hope, shortened patience and frustration. I don't know how to explain that to him, though.

Over the Weekend

I think having dad's sister visiting has helped his mindset a little, or maybe knowing someone else is there with him not only provides the companionship and stimulation he needs, it's pushing him to take somje extra steps with mom.

It's not that he's not doing enough, but sometimes he doesn't know what to do, or he's exhausted from the constant effort. I get it.

I spent an hour on the phone with mom's Hospice case manager and then the Hospice social worker, who visited mom and dad the next morning. Of course, about 30 minutes into the conversation, dad decided he was through talking with her and had an appointment he needed to get to. He really did have the appointment, but when he's done talking, he's done, and that's pretty much it.

So, I asked him how the conversation with the social worker went, and he said, "Oh, we didn't really talk about anything."

I'm thinking: "I talked to this woman for an hour, and you didn't talk about anything?"

So I asked him, "Did she mention getting some extra halp for you and mom?"

"Yeah, she did bring that up," dad said.

"I think it's a good idea. What are your thoughts?"

"Oh, I told her I would have to think about that. Maybe next week I'll give it some thought," he replied. "There are a lot of caregivers in this directory, and they all charge for this and that..."

Again, I'm thinking that not even 24 hours before, he was telling me he doesn't think mom will make it through another week, so the stall doesn't make any sense to me.

He was short with me on the phone as well. He really doesn't like talking any more than he has to, so he shooed me off.

Critical Mass

Of course, as soon as I get back to San Antonio, all hell breaks loose.

My dad has hit a wall as constant caregiver. He's overwhelmed and frustrated, isolated and impatient. Having nurses and aides come for an hour or two each day still leaves him the rest of the day and night to care for her. He's trying to let logic override emotion, but without realizing it, his emotions are overriding logic. It's too hard for him to think about her being gone, so he thinks about it all the time. He's lost sight of why it's important to keep trying with her, to talk with her, to get her out of bed, to help her eat and drink, to take her to doctor's appointments. He doesn't see the point in any of it and he gets upset with me for questioning him.

Today, he had two things on his calendar: Take mom to the oncologist in the morning and meet my aunt Florence at the airport in the late afternoon. Having the Hospice aide call to schedule a visit in between those two events was too much on his plate, so this morning, he decided not to take mom to her appointment - thought it was a waste of time, told the Hospice aide not to come today - not convenient, and said that he was considering not driving to the airport to pick up his sister.

When I told him there was a point in taking her to the doctor - they were very clear in saying that they wanted to see her today - and that the aide comes to help both of them, he got defensive and told me I was suggesting he wasn't doing a good job with mom.

"Dad, you're doing a great job, and this is unbelievably hard. It's what you've been doing day and night for a month now and that's a lot to ask of anybody. All I'm saying, is that there's a disconnect. I'm hearing you say it's time to just let her slip away, but I have not heard that the doctors have said that it's time to discontinue treatment. Her doctor saw her Monday and wanted to see her again today, dad. There was a reason the doctor wanted to see her again in two days."

"The doctor wasn't going to be able to tell us anything," he protested. "It's just more of the same. The tumors are getting larger and there's nothing we can do about it, and you have to accept that."

"Dad," I said slowly. "How do we know what kind of tumor growth is there? You canceled her CT and PET scans last week. Her oncologist says her blood markers are improving."

"The blood markers go up and down all the time," he snapped. "It doesn't mean anything."

"Yes it does mean something," I said. "If it didn't mean anything, the oncology nurse wouldn't have mentioned it to me on the phone yesterday. She said it's the second time in recent weeks that it's gone down. It's one of the reasons they were very eager to see her today. You can't just not take her to these appointments."

"Fine. You take her to the doctor and to get her scans," he said. "I'm hanging up the phone now. Call me later and tell me what you decide to do."

What I decide to do. He's done and he's giving it over to me. For the first time, I have no idea what to do or say. I'm frustrated from the confrontation and I feel like I need to drive back up there again.

I spent the rest of the afternoon on the phone with the Hospice case manager and the social worker. I made my case for an intervention and the social worker is making a home visit tomorrow. She's going to suggest to my dad that in addition to Hospice, that he bring in another caregiver who can spend more time there during the day.

One Month

I looked out to the street earlier this morning, and watched as clusters of women walked out their doors, meeting other women already walking down the street. It was the monthly women's coffee for their neighborhood, and the women were all walking together to one house.

Dad said, "That's the neighborhood coffee that your mother went to one month ago. Then she came home, went to bed and that was the last day."

Meaning, the last day that mom woke up feeling good. the last day she ate and drank well, the last day she got up and did anything other than move to the chair, the last day she made sense.

Sitting in the Sun

Mom took a few of her pills this morning. As she cups several in her hand, she lifts her hand to her mouth, but falls short, and as she tilts her hand, the pills tumble.

I pick them up to try again. I put them in her hand, but she looks at her hand, unsure of what she is supposed to do.

"That's OK," I tell her. "Let's just skip the hand. I'll put them in your mouth for you."

She has trouble swallowing them now; it's hard for her to suck water from the straw, like she forgets how straws work.

She remembers for a moment and takes a long draw, then breathes out into the straw, and tiny particles of the pills that had been disintegrating in her mouth cloud the clear water in the glass. 20 minutes and a spilled glass of water later, she took fewer than half of her morning pills and was ready for a break.

I said, "That's fine, mom, but it's going to cost you a hug."

She smiled, and slowly wrapped one arm around my shoulder, then the other, giving me a strong squeeze.

"I can always do that," she said. 

She walked to the chair, a bright, warm spot next to the windows. Owen came in and sat with me on the ottoman next to mom. He watched her quietly for a moment, them climbed over me and hid behind the chair, one eye peeking out.

He's not bothered to be near her, but is hesitant to touch the splotched, sagging skin on her forearm. He climbs around and moves to the other side of mom's chair. She opens her eyes to watch him for a moment. She smiles and closes her eyes again, saying something about his energy.

Owen left with dad to run some errands, and while they were gone, Lori, the Hospice nurse arrives. Mom hasn't met her yet, so I take her in and introduce her and leave them to talk for a few minutes. Dad and Owen return, and dad goes in to talk mom and the nurse.

Owen's curious and wants to meet the nurse, so we go and sit on the far side of the bed for a moment, then he's back to playing Legos with his brother.

Hospice in the House

We've now arranged for Hospice care for mom. When Hospice care begins, much of the other care falls away. So, instead of the daily home health care visits, she and dad will now be visited by the Hospice team. They pretty much take care of things here at home. I'm still trying to figure out how it all connects.

Mom hasn't had anything to eat or drink today. I don't know how much the Hospice team will be able to help us with this. I don't think they will force her to eat. Dad has pretty much decided it doesn't matter any more. I think it's been so hard for him these past weeks trying to get her to eat and drink when she hasn't wanted to that he's just giving in to her wishes.

Owen wants to see mom. I tell him she's sleeping, but let's be real quiet and go in to check on her. He giggles at the plan. She's sleeping on her side, back to the edge of the bed. The bedsheets envelop her completely -- only a bony arm and her tufted head peek out. Otherwise, it's like there is nothing there. We turn and leave her sleeping.

Oncologist - Neutral Territory

Dad says mom's visit with the oncologist was good, but even the doctor is scratching his head about what triggered mom's reaction and downhill slide over the past several weeks.

The doctor didn't want to prescribe anything for pain, because he's worried that it will only increase her confusion. I'm thinking that if she's in pain, it doesn't really matter whether she's confused or not. She still knows when she's in pain.

On the optimism scale the doctor was neutral. My dad took that as a sign that her condition will not improve from here on out. I didn't know what to tell him.

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.

Still at the Hospital

Not a great way to spend a Sunday. They did a contrast CT on mom's abdomen this afternoon, which meant that she had to drink the nasty contrast stuff. I'm thinking "We haven't been able to get her to drink water for days. How the hell is she going to drink all of that?"

She wouldn't do it for dad...she finally agreed to drink it for the nurse.

As I suspected, there is a large obstruction high up in her bowel. There is no fun way to remove that. But leave it alone and it will rupture, she will become septic, and that's a completely different way to go. I suppose if she wants to cheat the cancer...but I doubt she's got the presence of mind to be thinking about it that way right now.

She's laying on the stretcher/bed in the ER exam room. Eyes closed, hands over her belly. Suddenly, she turns her head to one side and starts kissing the air. I wonder who she imagines she's kissing at that moment. She smiles and turns her head back to center.

I stand close and tell her that I'm leaving for a little while to go pick up the boys, but that we'll be back soon. Right now, she has no concept of "soon," so that could be five minutes, five hours or five days. She opens her dry, encrusted eyes to look at me, smiles, and politely says, "No thank you. I just had some. I don't need any of that right now."

Back at the Hospital

Mom is back at the hospital this morning. Finally got dad to agree that EMS was the best way to get her there.

As I made the call, dad wanted to make sure that they didn't come into the neighborhood with sirens blaring. As usual, he doesn't want to call attention to the situation or create unnecessary drama.

I explained to mom that I was making the call, and that dad and I thought she needed to go the the hospital and not to be alarmed by EMS, but that we thought it was the easiest way to get her there. She understood what I was telling her and agreed.

Dad followed in his car, but asked me to stay back and take care of a few things at the house before I head over there to join him. I'm taking a few minutes to make a few phone calls and post some online updates.

Coordinating Life Stuff

Best laid plans...

Friend and neighbor Cyndi, who is also spending a lot of time caring for an aging parent right now, has given me a lot of perspective on caring for family and preparing for loss, as well as some good medical advice.

Cyndi doesn't mind the ping of my text messages at 3 a.m. and she knows when to push me to talk and when to stay back and let me keep to myself. I return the favor by bringing her Starbucks or pasting Aretha's inauguration hat on her head shot.

Cyndi is leaving tonight to spend the week in Houston with her dad before he travels to Georgia to stay with one of Cyndi's siblings for several months. When Cyndi goes to Houston during the week, I get Kim to and from school every day.

If I decide to stay here with the boys for a day or two during the week, of course, I will have to help Cyndi carve out a quick Plan B for Kim. I know she won't mind and that we'll come up with a solution, but still, I hate having to change plans on friends like this. I know she'll tell me I'm ridiculous for even worrying about it.

Bringing the Kids?

Since mom's health has declined so fast, I haven't really had a chance to explain anything to Isak and Owen. They were here with me two weeks ago, and it was pretty clear to them that she was ill, but I don't think they thought about it a whole lot.

Of course, in the days since, the kids overhear the conversations, the multiple, daily phone calls with my dad, Sarah and the people in my life. That gives them a gradual awareness, but it's time to have a more in-depth conversation with them about it.

My friend and neighbor Nicole, who lost her mom to cancer two years ago, reminded me of the importance of letting the kids spend time with mom and to absorb what's happening in their own way. Being here to see it and connect with their grandmother makes it easier for them to say goodbye when it's time to do that, and takes away the mystery of death.

Alternate weekends with their dad make it tough for me to bring the boys here every weekend. At this point, I'm considering bringing them up here for a day or two this week. Nicole reminded me that it's OK if they miss a day or two of school right now.

It's impossible to say whether mom is in her last days with us. Even so, I don't want to wait until it's too late to have the experiences with her, or to encourage the people in her life to be here with her if they want to. I don't want to call it saying goodbye, but I think we will all be grateful for just being able to spend a little more time with her right now.

Sunday Morning Decisions

Mom was up at 5 a.m. vomiting. Since she hasn't been eating or drinking, "vomiting" is relative, of course.

This morning, she refused meds again, and refused to get out of bed. Of course, she hasn't eaten or had anything to drink. I was surprised to learn that she's not taking anything for the pain in her abdomen, which is now a constant.

Mom's stomach and back are so distended. I think her bowel is obstructed and I want to get that looked at before rupture/perforation.

I had to talk my dad into getting EMS to take mom to the hospital. He agreed that we should go ahead and take her to the hospital today but thought that we should drive her ourselves. I had to explain that EMS would be easier -- one move onto the gurney and that's it, as opposed to us moving her from the bed to the wheelchair, the wheelchair to the car, back to the wheelchair, etc.

I think dad was worried that if we take her to the hospital, she won't be coming back home. On the other hand, my dad has moments where logic tells his that if she's in such pain, he's ready to let her go. He lets logic override emotion more often than not, but I know that emotionally, it's taking a lot to get him to where he is now.

And Then There's My Way

I don't mind talking about what's going on with my mom -- feel free to ask in fact! But sometimes, when there's not time for long conversations, or those times when something happens "in the moment," it's easier for me to write about it.

I write things so I don't forget about them. If you know me, that makes sense.

Some of what I write here is sad, some of it is frustrating, some of it is funny. A lot of it may seem irreverent, but it's what's happening. 

So, consider this fair warning: I will tell stories about how my mom and I had dinner with my dead grandmother and Mary (as in Mother of Jesus). You'll hear about the sometimes amusing ways she rebels against me and my dad. If you know Betty Ann, you understand that rebellion is a new color for her.

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."