Recent reflections

Our family enjoyed several days at the cabin in Angelus Oaks after Thanksgiving, the first time Susan had been there since May. We’ll normally get 6-8 trips each year to our family’s mountain retreat that my grandparents built, but we've had to settle for fewer visits recently due to Susan’s illness. We enjoyed relaxing with my mom, sister and brother; family meals, forest walks, and watching football and movies. I said before that I tease Susan relentlessly and often proceed past the point of annoyance to complete a manic moment. One evening at the cabin I said one too many jokes and surpassed her limit. She decided to ignore me. She did a phenomenal job, to the amusement of the household. When I spoke to her, she would not acknowledge me and would ask if anyone heard anything. When I got into her line of sight, she would gaze past me. She became the relentless one and was perfect at it. I knew in a short while she would need my help to get ready for bed and thought she’d end it there. I was wrong. She allowed me back into her world, but only as her bathroom attendant. And she insisted I avert my eyes from her. We ended the night with a return to reality; but Susan gained my unwavering respect as a most worthy adversary on the field of contest.

One day last week as Susan sat at the dining table after a meal, Austin came up to hug is mom and then nibbled on her ear. Just then he whispered he’d bit her ear off and asked if she wanted it back. She didn’t respond. He asked again. She just looked around blankly. Then he moved to her “good” ear and asked again if she wanted her ear back. She said that would be good. Austin got a kick out of his funny mom.

On Monday I sang with our church’s Holiday Chorale in a Christmas presentation for Pathways Volunteer Hospice at the Lakewood Civic Center. It was a poignant opportunity and a privilege for our choir to minister among people who provide such important help to the terminally ill and to grieving families. That night as we lay on our pillows I told Susan about the evening. We talked about knowing three other people with brain tumors who had needed hospice care before they died. We recognized those who need hospice care are usually in the end stages of life and don’t communicate very much, and how hard that must be for a loved one. We wondered together whether Susan would ever need that type of care since it seems so far off from her presently good condition. I told her how glad I am that we have each other now and that we can talk about anything. I’m glad I have my friend, my partner, and my sweetheart with me. I recalled her occupational therapist’s question that day whether Susan had resumed normal social activities, perhaps like talking on the phone with a girlfriend. Susan said no, but said she didn’t really talk on the phone a lot to friends before her illness. We have close friends we love, but we realized she doesn’t have a chummy BFF girlfriend and I don’t have a best buddy. We have each other. Susan talks to me on the phone. I hang out with her. She said we’re none the worse for not having those types of friends. I said we have a strong marriage, a marvelous and enjoyable relationship. We prayed together and were thankful.

More chemo, more nausea

After over six months of chemotherapy injections, it seems the accumulation of the stuff is catching up with Susan. For the last two treatments, she began feeling nausea even during her infusions and started vomiting within hours. These episodes have been tough. Last Wednesday, the vomiting lasted overnight and into Thursday morning on about two-hour intervals – and this followed an extra heavy dose of Zofran for nausea before she left the treatment center. After a long night, I was able to get a different anti-nausea medication going. She stabilized. Up until month five on the Avastin/CPT-11 regimen, Susan had no nausea at all when having Zofran the day of and the two days following chemo. She would be tired, but not nauseous. While Avastin doesn’t seem to be an issue, evidently Susan’s tolerance for CPT-11 has waned. As a result, Dr Nghiemphu (back from maternity leave – it’s a girl!) said she’ll give Susan a different drug for nausea next week or just give her a break from the CPT-11. Seeing Susan as ill as she was made me wonder if we were headed for another hospitalization or who knows what. I’m just glad she snapped back well after several days’ rest.

Our insurance company approved Rehab Without Walls to begin working with Susan for the aggressive, in-home therapy – almost exactly 12 months from when the team began treatment last time. We met today with the physical and occupational therapists and will meet tomorrow with the speech therapist. It was great having Tracy and Kim back with Susan since this round of therapy promises to be another effective step toward independence at home. We discussed Susan’s goals for unassisted activities of daily living, housekeeping, and homework supervision. Tracy got her using her single-point cane instead of her walker and worked with her to overcome an acutely sore right shoulder and strengthen the muscles she needs to get up from a chair. Kim got her back into the kitchen with a quiz about the contents of each cupboard and drawer. I’d say Susan is physically weaker but cognitively stronger than she was a year ago. We all expect her to make rapid progress and sustain the encouraging path she’s on right now.

While trying to get home from Westwood last week, Susan was getting sick, we were stuck in gridlock on Wilshire Blvd behind some police activity, and we desperately needed to find a bathroom. I shucked and jived into a u-turn and aimed for the driveway next to a bank building, figuring we could use the facilities there. The driveway led to a narrow alley with no parking, but as we proceeded I saw a grassy area and a home-like building and knew we’d stumbled upon Pierce Brothers Westwood Cemetery. The lady there was very gracious to us as I explained our need, so we found a little God-given sanctuary among the skyscrapers. Susan was able to take all the time she needed before we made our way back to the car. As we thanked the lady I asked whether she knew my cousin Jim Biby, who’s an area director for the company that operates the property. She said she knows Jim and that he would be visiting there the next day, so I was able to leave a greeting for him. As I drove around the roadway on the way out, I pointed out some of the gravesites I noticed to Susan, like Merv Griffin (“I will not be back after this message”), Rodney Dangerfield (“There goes the neighborhood”), Marvin Davis, and Mel Torme. It wasn’t quite like seeing Mel Brooks at Junior’s Deli or John McCain on the 405, but was sort of a celebrity sighting nonetheless.