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.

Good MRI, bad nausea

Yesterday at our clinic visit with Dr Cloughesy at UCLA we were once again relieved to learn that Susan’s brain tumor remains stable. A fourth stable scan since beginning CPT-11 and Avastin infusions in June makes for an excellent trend. Also, with slightly improved liver enzymes, she was able to receive the CPT-11 again after a six-week layoff. Even so, last night brought a struggle with nausea and vomiting that thankfully hasn’t been too much of an issue for Susan – and hopefully will ease soon. She had some vomiting on Tuesday prior to chemo, some abdominal cramps yesterday during chemo, and a long spell of vomiting during the night. We’re used to having a variety of suspects when an unpleasant symptom arises, so this is no exception. The urinary tract infection we learned yesterday has made a comeback can cause vomiting. The antibiotic she began taking last night for the infection can cause vomiting. Weaning off steroids like Susan is doing can cause vomiting. The chemo she had yesterday can cause vomiting. In any case, last night was a rough one. She managed to eat a little food today and get some rest. Hopefully, she’s past the worst of it. In the big picture, Susan’s official medical prognosis is still “guarded,” thanks in a big way to her tumor stability. When dealing with a brain tumor like GBM, terms like “stable” and “guarded” actually are comforting. We’re still in God’s hands, as always.

We strolled to Westwood Village again yesterday after chemo and had lunch at Jerry’s Deli. When we were led coincidentally to the same table we had last time, I wheeled Susan into place and my mind flashed to our meal there two months ago. I’m so thankful for how much she’s improved just since then. Nurse Nikki had remarked earlier at Susan’s progress when she realized Susan was thick in our conversation together – that hadn’t been possible last summer. As we approach Thanksgiving Day, I am aware of many reasons to be grateful. Susan continues on a good path of recovery. Our children have their mother back home after a long absence. The malignant brain tumor that changed our lives 17 months ago has not advanced since April. We’re blessed with caregivers that allow me to work as much as possible. Our family and church support us in countless and priceless ways. The Living God we trust meets our needs each day. We are grateful.

On a stable path

It’s been over three weeks since Susan came home. She’s more like her normal self than ever, for which we are thankful. Memory, awareness, and alertness have improved greatly; about to the point she was in February or March. For an idea of just how “with it” she’s become again, she probably could write this update herself. When she wants to confirm what day it is, she’s usually right. She’s remembering what activities our kids are up to, whom she talked to earlier in the day and things she did days or weeks ago. These things simply were not possible for her this past summer. It’s amazing what combined effect her back injury, hydrocephalus, anemia, and blood infection had on her, and it’s wonderful how far she’s come out of it. Susan continues to make progress physically also. When she came home, she needed a guiding hand from me and a firm grip on her walker to get around the house. Now the walker stands nearby since she needs only my hand or two to go short distances. Before, the only way she could leave the house was in the wheelchair through the back patio and out the side gate for transfer to the car. Now I can support her as she manages the front steps. Balance is still an issue; but her muscles are stronger. I think she’s ready for more aggressive rehab work and will contact the team who worked with her a year ago. Lord willing, she’ll have another good MRI this week and remain free of complications.

We’re getting great support from caregivers who help Susan from 7-4 on weekdays. Victoria is a freelance health aide who attends our church and is here Monday through Thursday. Cynthia is another aide from a home health company called Sheridan Care and is here each Friday. The help they provide is invaluable for companionship, safety, hygiene, and meals; and allows me to get in some decent hours at the office. My work providing financial advice is a challenge during the present economic and market crisis, so knowing Susan has competent care at home allows me to focus on the needs of our clients while I’m there.

Susan continues her chemotherapy regimen every two weeks at UCLA. Her liver enzymes have been elevated each of the last three visits since October, so she’s received only one of two drugs, Avastin. One of her daily drugs also expresses through the liver, so the CPT-11 only adds to the load. We’ll see what her blood tests reveal this week and whether she’ll resume with both IV meds. Aside from the 8-10 types of pills Susan swallows every day, we’ve also added twice-daily injections to our routine. I give her a Lovenox injection in her abdomen every morning and evening to prevent blood clots (deep vein thrombosis, or DVT). Dr Cloughesy informed me that developing blood clots is fairly common in brain tumor patients (for some reason). Susan already has an implanted IVC filter to prevent a clot from traveling to the heart; but the neuro-oncologist wants to prevent clots from forming – thus, the Lovenox. Susan dislikes getting stuck as much as I don’t like sticking her. But we do what we must.

I asked Susan out on a date Friday night. Lexie and the boys were at work and a football game respectively, so I contacted my wife’s social secretary, managed to clear her calendar, and asked her out on a date. She said “yes.” I was relieved because I couldn’t have handled the rejection. We went to Polly’s Pies for our first dinner date since May or June. She used the walker (not the wheelchair) in another point of progress. We had a terrific dinner and took home dessert to share. I think I’ll ask her out again.

We’ve been back to church together now for several Sundays. What a blessing. We’ve been greatly encouraged by expressions of care, prayers and reminders of prayers, hugs, tears, and well-wishes from our family in the Lord. Susan and I are continually aware of God’s greater purposes during our season of struggling with her brain cancer. We don’t know exactly what those purposes are, but we know God does, and we trust Him. Once again, it comes down to a profound mystery. We are not promised a life of ease or one that is free from threat, devoid of pain, or absent of calamity. But God does give us His presence and His peace during hardship – more than enough for us. The mystery is not just the fact of God’s hidden purposes during tough times – it’s that the circumstances do not need to be attended by the fear, worry and despair that naturally follow apart from God. That is a marvelous gift.

One other gift I’ve come to appreciate with our cancer journey has been the gift of intimacy with my wife. I think it’s the result of time spent. We’ve been together a lot over the past seventeen months, during periods ranging from uncertainty about death to lightness and joy. We laugh a lot. I tease Susan mercilessly, sometimes pushing past the obvious point of annoyance to prolong a manic moment. She’s usually ready to forgive me for that. We’ve had countless tender moments of sharing our deepest hearts with each other and professing our mutual love. We just enjoy being together. We genuinely never tire of each other – I guess that’s the mark of abiding love. We trust each other totally as our lives are more intertwined than they ever have been. Susan knows I’ll do anything for her. Anything. And she never forgets to express her appreciation. I often tell her I need to do a good job so she doesn’t fire me. I’m not surprised it took brain cancer to bring us to the finest point of our marriage, and I’m not even sorry for it. To rally together and grow closer during hard times is the way it should be.