Disease Diary (Part 2)

WineGuy quickly recovered from the insulin overdose and settled back into his daily routine:  working from 7:00 a.m. until 5:30 p.m. each day. He is a physician who stands most of the day either doing procedures on patients or seeing them in the office. His chemotherapy regimen proceeded without incident — or so I thought — throughout the summer and early fall of 2013. It’s clear I wasn’t paying as close attention to WG as I should have; otherwise, I would have noticed the progressive loss of his strength.

20/20 hindsight now shows me that it started with a mild neuropathy and loss of strength in his hands. He couldn’t open jars for me; I had to ask Wizard to help me. In the early fall of 2013, I watched as WineGuy arrived home from work and struggled to climb the two steps into the house. He grabbed on to a front porch pillar, hobbled up one step, hobbled up the other shuffled his way into the house. When I asked him how long he’d been having trouble negotiating the two stairs, he replied “a few weeks”. He was suffering from serious myopathy (loss of muscle strength and mass) in his legs, but he never said a word to me. Apparently, the boys had noticed it, but they didn’t say anything either.

The Jewish holidays came early in September 2013. WineGuy, now a trustee of our synagogue, volunteered to chant the Haftorah (reading of the prophets) for Yom Kippur, the Day of Atonement. As I sat in synagogue that morning, I watched him sit on a stool to get through the reading; he never did that before. I listened to a weak and raspy voice that used to be a rich baritone, and I saw a shadow of the man I married. Chemo was killing him. One morning, less than 2 weeks later, he woke up early for work and nearly fell getting out of bed; he was weak and unsteady on his feet. I offered to drive WG to work and pick him up, but he refused. WG left for the office, and I got ready for the day. My phone rang at 9:30 that morning. It was WineGuy.

WG:  Hi, where are you?

Me:  I’m at home. What’s up?

WG:  I’m coming home.

Me:  What??

WG:  I’m on my way home. My nurse is driving me home in my car, and her husband will pick her  up at our house later.

Me:  What happened?

WG:  I did one procedure, and I couldn’t stand up any longer. The surgical nurse told me I’m done and sent me home.

Me:  Oh, my G-d. Just get home safely.

WineGuy stopped working that day and has not worked in more than four months. As of this post, he will not be returning to work for several more months. However, I don’t want to get ahead of myself here.

Once WG returned home that day I or his nurse, Nurse S, stayed with him in the house the entire day. Nurse S was afraid he would fall because he was so weak. It was surreal and irritating. That was the watershed moment when my time was really no longer my own. I was so furious with him for  getting behind the wheel that I took away his keys for several weeks. Once WG admitted he was too weak to drive and that he wouldn’t drive until a doctor cleared him, I returned the keys. I became the family chauffeur for the next three months. I never realized how much help WG gave me with the routine driving until he was no longer able to do so.

WineGuy was so weak, he could hardly get out of bed. He cancelled several doctors appointments because, although he could get down the stairs out of the house with my help, he lacked the leg strength to climb back up into the house. He couldn’t ignore the doctors for long, so we devised a system to get him up the stairs:  each time we arrived home, I would enter the front door and bring a heavy, mahogany dining room chair on to the porch. WG would get out of the car, stand by the steps, then lean back carefully to sit on the chair. He had barely enough strength to lift his legs and swing them around ninety degrees so his feet were fully on the porch. Once he was in position, I had to physically lift him up to a standing position so he could walk inside. I am 5’6″, and WG is 6’4″. At that point, he outweighed me by maybe twenty pounds, and it took every muscle I had to help him stand. Even though Wizard is as tall as his dad and is very strong, WG refused to allow Wizard to help him because Wizard would not (and does not) follow instructions. Fortunately, at one of the myriad doctor appointments, WG’s internist ordered physical therapy for him at home. PT allowed WG to regain his balance and some strength back. After about a month of home-based PT, WG started going to PT three times a week with a local physiatrist.

Other serious side effects of chemotherapy were WG’s altered taste and loss of appetite. WG dropped almost 50 pounds in the fall of 2013; to date he’s down more than 75 pounds, with a diagnosis of anorexia … odd for a big guy like WG. I would alter my dinner preparations based on what did or did not taste good to him that day. When I was planning to go away for a reunion in New Orleans with the August96 Moms, I put out a Mealtrain request with all of WG’s likes and dislikes at the time. My friends were overwhelmingly generous with the meals they brought the family. As an aside, even though WG and I agreed a month earlier that I could go away, I wan’t sure I would go until I actually got on the plane. I had a long talk with Nurse S who advised me to wait until the last minute before possibly canceling the trip. I had arranged all the kids’ rides and stocked the house with food; my housekeeper kept an eye on everything so I could get away for a few days. It was a welcome respite but not without its low points.

While I was in New Orleans, I arranged to have lunch with WG’s longtime, dear friend, Lulu. She is so near and dear to us that our boys call her Aunt Lulu. I called Lulu when I landed, and she met me at my hotel to take me to lunch. She greeted me with a great big hug and smile, and I told her to sit down. I broke the news about WG’s lymphoma, and Lulu wept. Lulu works in health care and understood the diagnosis and prognosis all too well. She and I could barely keep it together at lunch that day. The next day, I was out touring the city with the August96 Moms when my phone rang. It was WG’s oncologist with the report of a surgical procedure WG insisted on having while I was away. I couldn’t hear the doctor, so I told my friends I would get off the tour bus and meet them later. The moms wouldn’t hear of it:  everyone got off the bus and escorted me back to the hotel so I could make my calls in private; they waited in the lobby until I returned.

The oncologist reported that the surgeon removed more dead tissue from WG’s right leg. The pathology report stated that, despite WG’s completing five of six planned sessions of chemotherapy, there was still active tumor in the right thigh. The next step would be a course of radiation to the specific area. The oncologist also said that WG would likely need a stem-cell transplant, if WG were a candidate. We needed to consult with the specialists at Moffitt Cancer Center in Tampa, Florida, about the transplant. I stayed the rest of the weekend and returned home to start planning the next phase of treatment.

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