A hot date

Last Wednesday brought us back to UCLA for chemotherapy with Susan’s bi-weekly treatment, quite a routine event now. Nikki was expecting us and had Susan’s bed waiting. What service. The nurse was impressed once again with Susan’s alertness and said she’s better than she’s been in months. I agreed. I shared that when we’d parked downstairs, Susan asked why I hung the handicapped placard on the mirror when we weren’t parked in a handicapped space. It’s because the displaying the placard allows us to park for free – but the big deal is that Susan noticed such a detail. Following Susan’s blood test, we settled in for 30 minutes of Avastin and 90 minutes of CPT-11. Susan had an exam by the nurse practitioner, then slept most of the time.

It was 6pm when we were ready to leave; and given the choice of rush hour traffic or a hot-date dinner together, our decision was easy. I wheeled her down to Westwood where we came upon Jerry’s Deli and enjoyed the first dinner out together in about 4 months. She ordered one of her favorite meals, open-faced hot turkey sandwich, while I had a great salad nicoise with lots of sour things in it and toasted bagel slices on the side. Afterward, I got her attention with the phrase “ice cream sandwich” and we scooted over to Diddy Reese to share a generous scoop of mint chip ice cream between two chocolate-chocolate chip cookies. We had gobs of deliciousness for only $1.50.
At dinner we talked about Susan continuing to work hard in physical therapy so she can come home soon – not soon enough for her. She’s been feeling cooped up recently and was really glad to have a day away from the hospital. I asked how she’s doing in her spirit. “I’m ok,” she said. “I’m not jumping for joy, but I’m doing ok.” I asked her if she’s trusting God. “Not as much as I should, but as much as I can.” We agreed the hard part about her illness is the uncertainty of the outcome. I told her how proud I am of her that she’s doing so well after going through so much, and that I love her positive outlook and her never-quit attitude. Once again, we were left to contemplate life taking this unimaginable turn while God continues to provide for us in every way. It’s just a mystery. Susan’s a bit of a rule-follower, so she asked me if we’d be in trouble for being away for so long. “Ha!” I scoffed brazenly. “Let ‘em find us.” I’m the wild risk-taker who placed my wife in jeopardy of a hospital reprimand (or having her rations reduced to moldy bread and gruel), all for the sake of a glorious hot date and the nicest dinner we’ve had in a while. At least I’d be getting her back on a full stomach to endure her torture.

Today, I visited Susan at 11am and saw her in action for therapy. She had just finished 20 minutes of leg work on the “omnibike” and was ready for a walk. With Melissa’s help to stand, Susan used a walker to shuffle out the door and down the long hallway to the bulletin board by the cafeteria – about 100 feet, with only Melissa’s hand on her back. I was impressed. We helped her into her wheelchair with missing foot rests and pushed her back to the therapy room as she lifted her feet off the floor for the whole distance. She returned to the omnibike for 20 minutes of arm work and left me grateful for her therapy team and for her terrific progress.

A good week at rehab

With her back repair and recent complications behind her, Susan had a good week of rehab at Broadway by the Sea. Therapist Melissa told me it’s been easier for Susan to lean forward for leverage and push herself up to stand without back pain or her rigid brace. Susan walked using her walker about 10-20 yards down the hallway and back with Melissa assisting. She’s been spending a good part of each day out of bed, having meals in the dining room with other patients, having therapy, or sitting in her wheelchair. Her short-term memory is very poor, so when I see her toward the end of the day, she has little or no recollection of how the day went or what she did. That remains a disappointment. Even so, I’m glad she’s in good spirits and is alert and conversational.
This afternoon when the boys and I visited and Susan wanted to move from her wheelchair into bed, I had her try to stand up from her chair. She didn’t quite have the strength to get up by herself, but she needed only about half the assistance from me than before. I also was pleased that she needed less support when standing. In her chair she was able to extend both legs and lift up her feet, another milestone compared to two months ago. I’m encouraged to see the strength Susan has regained.

I had numerous encounters with people at church today ranging from a few words to meaningful conversations and prayer. Once again, I was deeply impressed by the support and care from our family of God. Debbie Thomas conveyed her love for us with empathy and tears. Daniel Gannon carefully asked about each one of our family. Joyce Wybenga radiated love, as always. Gordon and Michael Weisenberger urged me to make sure I take care of myself. Such compassion, loving inquiry, and firm commitment are a human treasure and a gift from God. Each one said they’re praying for us. In my few moments with Craig Chapman, I thanked him for his prayer and told him we feel it. Perhaps wishing he could do more, he said “it’s kind of intangible.” While I agreed, I also told him the effects are quite real. Thanks to God, we have His true peace – I know it makes no sense, but in spite of our circumstances, we know everything is ok.

Another good week

We spent a lot of time together this week, from Susan’s orthopedist appointment on Monday to chemotherapy on Wednesday to her overnight hospitalization for back surgery on Thursday. It was a good week in all respects; and Susan did well. Monday’s visit with Dr Bhalla got Susan scheduled for Thursday’s kyphoplasty in short order, since it’s been almost two months since her L-1 fracture that by now has begun to heal. The doctor didn’t want to wait even another week. We got the pre-op and admissions stuff going right away.
On Wednesday, it was Nikki’s turn once again to help with Susan’s chemo, so we got excellent care. She remarked immediately about Susan’s appearance and her responsiveness and how much she’s improved in just two weeks. When her routine pre-chemo blood test showed low counts for red cells and hemoglobin, and especially because of Thursday’s kyphoplasty, she received a two-unit transfusion following Avastin and CPT-11. The additional three hours for the transfusion made for a long day at UCLA. After about seven hours in clinic, we left for Long Beach at 5pm. Earlier, as I watched each bag of blood drain into Susan’s body, I saw what it’s like to be on the receiving end of someone’s blood donation and remembered it’s been about a year since my last one. Human blood is one medical remedy scientists can’t manufacture – it must come from a vital person-to-person exchange. My friend Robbie Lyell and I got started donating in high school as soon as we met the age threshold at 18. A retired nurse named Ada was the volunteer who drained our blood at Apollo Park in Downey in 1981 and was the object of our teasing. I think Rob invited her to prom. We went partly for the cookies and I still do.
Thursday’s kyphoplasty brought Susan back as an inpatient at Long Beach Memorial fourteen months after her first brain surgery. This procedure was a breeze in comparison. She was wheeled from pre-op to the operating room at about 1:30pm and was done in about 45 minutes. We thank God for a smooth procedure and no complications. We had a great surprise when Susan’s cousin-in-law Carlos Gutierrez greeted us in scrubs and announced he would be the RN assisting Dr Bhalla. It was a fun scheduling “coincidence” I know the Lord arranged – and it was good to see Carlos in action. Even the anesthesiologist was familiar since he had done Susan’s mastectomy two years ago. It was all kind of a family affair. Of course the best result came with Dr Bhalla’s comments after surgery and exam on Friday. The surgery was a complete success. Susan has no physical restrictions, can resume full therapy right away, and will no longer need to wear a cumbersome back brace. We’re just thankful. We’re hoping she can remain free from complications or infection now, make progress with physical therapy, and return home when she’s able.

I realized how much Susan’s been through when I began to give the nursing team a summary of her medical history and current condition. My head was swimming with facts and details – lymph node removed during 2006 mastectomy (no BP or blood draws on right side); implants include surgical clips in her skull, the IVC filter, the L-P shunt, the port catheter; right side weakness and loss of vision due to stroke; unable to stand without assistance; needs zofran for nausea following yesterday’s chemotherapy – what important info did I forget? For some, a kyphoplasty might be a singular medical remedy to meet a significant need – for Susan, it’s one of many to follow a multitude. It’s kind of crazy; but that’s just how it is. During one quiet moment together at LB Memorial, I told Susan I loved her. She said, “I love you, too…but you got the better end of the deal.”

Progress continues

Following last week’s spinal MRI, we met with Dr Bhalla today to discuss his thoughts about Susan having the kyphoplasty procedure. As I described it before, it's a non-invasive surgery for compression fractures where the cavity of the vertebra is filled with a small balloon followed by bone cement to restore its normal height and shape. The new images show clearly the L1 compression fracture and swelling in the surrounding area – and Susan has tenderness in that area of her back with pain when she moves. These are classic indications that kyphoplasty may provide relief. Dr Bhalla expressed some concern about Susan having general anesthesia due to her neurological condition; but her oncologist cleared her to proceed. She’ll have her scheduled chemo at UCLA on Wednesday; then have the procedure done on Thursday at Long Beach Memorial and stay overnight for observation. We’re hopeful for great results.

Meanwhile, Susan has been making progress in gaining strength and function. She’s been more conversational and in good spirits, making broader mental connections than she has in months – like when I described a church we passed and she thought of my dad. Yesterday, she joked with the boys and teased Adam by snapping her teeth at him, giving him delighted laughter. When we arrived at Dr Bhalla’s office today, Susan unbuckled her seatbelt and opened the passenger door, two simple acts of awareness I just haven’t seen in her for a long time. The current momentum is encouraging.
Her progress can be oddly difficult, like when she recently got some perspective on her state of being and became somewhat depressed. She realized “this version of myself” is hard on everyone and apologized. I dismissed any burden and reminded her she didn’t choose to have a brain tumor. It is what it is. We’re in it together. Her heightened awareness can be hard for me as well. When I visited her on Friday evening, her thoughts were clear. She asked me, “So, how’s life and all of this going for you?” It had been so long since she was capable of showing such a level of compassion for me, I barely could tell her honestly “it’s hard” before I broke down crying. She held me and comforted me. After 23 years of marriage, Susan’s support as my wife is ingrained in me. It’s just there. But it seems like a long time since I felt it like that. Gratitude and sorrow welled up equally. This brain tumor thing is tough and it hurts! Later in the car, I cried more and prayed. I felt healed.

A quiet week

This has been a quiet week for Susan, a most welcome thing. She had a spinal MRI on Wednesday at a local imaging center in Long Beach that will allow the orthopedist to evaluate her recent lumbar and older thoracic injuries. We’ll meet with him again on Monday. Otherwise, she’s been fever-free, mostly pain-free, stronger, more alert and less confused. She continues to have daily therapy. Her stay at Broadway by the Sea is still open-ended and will depend on her getting stronger and walking again. Between UCLA and rehab, she’s been hospitalized for nearly two months – we miss her and look forward to having her home again.