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.

Doing well at home

It’s been two weeks since Susan came home and even longer since my last update. Susan is doing well. Life is busy. Between working, caring for Susan, interviewing and orienting her caregivers, and administering our home, it’s surprising how quickly a couple of weeks went by. Susan’s homecoming came with great joy on October 22nd. We adapted easily to having her back with the family. The hugs and kisses come easily now. Each of the boys has had many occasions to stop and linger for a smooch while walking by or to go out of their way to love on their mom. Lexie has been extra cuddly too, with both of us. But the night Susan came home, Lexie came into the den and announced her plans for the evening. Susan began quizzing her about where she was going exactly, who she’d be with, when she’d get home, and so on. Lexie looked at me sort of puzzled. I just smiled at her and said with a lilt, “Mom’s back.”

As for me, one word sums up Susan being home: satisfaction. In fact, the feeling was ecstatic for the first several days. At the risk of being insensitive, I admit it seemed to me almost like she had returned to us from being dead. Of course, we knew her absence was temporary; but she hadn’t set foot in our home for over three months. Her side of the bed remained empty. Her clothes and cosmetics were untouched. We had adjusted to being at home without mom – the food purchases, the meals, the household routines all adapted to just dad and three teenagers. I couldn’t help but wonder whether we had a dry run to allow us practice in case she should pass away – but such thoughts are too big for me. With good reason, the contrast of her return brought sheer delight to us. We know absence makes the heart grow fonder; but I was surprised how much I had missed having Susan with me. I lay next to her that first night and told her I had missed her, how she completes me, and that I feel utterly satisfied being with her. It took three or four nights of the same thing before I expressed myself well enough. Lately, my words are simpler. “You make me happy.” Susan said it’s strange I would say that when she’s in her condition, so I emphasize the you who makes me happy no matter what the condition. It’s satisfying to be together. I will write more about our life during the past couple weeks as time allows.

I ignored paying bills and doing several other things this evening to sit with Susan while we watched TV awhile and eventually did our bedtime routine. I enjoyed spending the day with her as we went up to UCLA again for chemotherapy and just needed to linger with her. She prayed a beautiful prayer at bedtime. She thanked God for the gift of our lives, that He’s given us to each other and given us our children and our home. She thanked Him for always being with us and for making a home for us in heaven when it’s our time to die. She asked Him to fulfill His plans for us during our time on earth and to help us bring glory to His name. As she prayed like that for several minutes, it seemed like each thought that came to her was laden with truth and bore the nature of the Holy Spirit. I was aware of contentment now and for the future. Afterward, I told her how glad I am she’s secure in trusting God. She said this illness has caused her to test what she believes about God and decide whether it’s true for her. It is. I said her faith and confidence in eternal life have made her strong. She said she doesn’t think she’s very strong. I remembered what Paul wrote and said God’s power is made perfect in our weakness; and that’s the kind of strength she has. She said, “When I am weak, then I’m strong.” Yeah, that’s it.