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.

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...

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."