Sunday
Jul152012

19. Home

Home. There's always been something special about home. Family. Familarity. Warm feeling. I would need all of them and more to recover from neobladder surgery and the whole host of medical complications that had come with it.

Due to my embolism, I couldn't take stairs. In fact, I had lost a good part of my muscle structure from my quads to my arms. Walking had become an aspiration. My strength was zilch. So a hospital bed had to be placed on the main level, which turned out to be in the family room. This meant disrputing things for Kate and the boys. The family room became the "let's visit Dad's room." The kitchen suddenly had a couch in it. A secretary's cabinet became storage for personal supplies. And the rest of the main level was littered with oxygen tanks, tubes, drain supplies and other medical stuff. Yuck.

My brother-in-law, Steve, arranged the family room. He situated my hospital bed in a way that I could watch television -- it was high season for football and baseball -- and see out to the back yard, where the colors were just beginning to change for the fall. All this improved my mood, but not my condition. I still had to go through the routine of flushing drains, cleaning up when they leaked, and forcing myself to get out of bed and sit in a chair.

Kate stayed home from work that first week, taking care of my drains while teaching me how to do this myself. Dr. Schenk had been adamant: Kate would stay home only for a week; after that, I had to take care of myself. And I did learn.

Another benefit of being home was seeing my boys. Kate had given Stephen a car to drive back and forth to James Madison University, where he attends college. So he was able to visit on weekends. Jack was in the throws of adjusting to high school, which can be daunting both academically and personally. And Michael was ever the organizer, telling me where things were, helping me out of bed, and walking with me across the house. I looked forward to the time when I would no longer be seen as the patient, but as a dad.

What else was great about being home? Having so many visitors. My parents. My sisters Cathy, Joan and Chris. Their husbands Steve, Phil and Paul. Steve came by the most, carving out time between teaching college classes. It was such a joy to have him around. My brother, Dr. Bob, helped me understand what I was experiencing medically. His wife, Leala, helped Kate with food for the boys. Kerri, my sister-in-law, was a regular. And my sister Betty, who lives outside Denver, had become such a texting machine throughout my ordeal that I seldom went a day with talking with her.

When you add in our friends, such as Paige, Joi, Kathy, the Scwabs and Ericksons, it became clear I was surrounded by a lot of love and affection. It was pretty powerful stuff. Their feelings gave me added incentive to keep pushing myself, accelerating my recovery.

Oh, yeah, recovery. Not very pretty at the start. A home nurse from the hospital visited a few times a week, as did a physical therapist. I finally built enough strength to walk outside, initially starting with just up and down the driveway. Since I still had drains in me, all I could do was throw on a bathrobe, hook up drains up to a walker, and slowly make my way onto our street. A pretty sight, it was not. But it was a beginning.

Then came the transforming event. To free up a car for Stephen, Kate had bought a red, convertible Mini Cooper for herself. I had never ridden in a convertible. One day, Kate took me out for a drive. Me, my drains and bathrobe. It was one of those beautiful fall days: sunshine, mild temperature, perfectly blue skies. She drove us through the mountains, the wind whipped through the car, and my favorate music (R.E.M.) played on the radio.

In this wonderful environment, I suddenly felt a jolt of emotion unlike anything I had experienced during my ordeal. It was joy. Sheer joy. Joy for being alive. Joy for being with Kate. Joy for a recovery that had finally begun. Joy that a whole new life awaited me. From this moment forward, I would be getting only better, not worse. Other than the birth of my first son, this was the greatest moment of my life. And I was so blessed, so privileged, that God let me live to enjoy it.

Things improved as more drains were removed from my body. It would take a full month for all the drains to leave. And as each drain was removed, my mobility improved. I was now able to take showers and otherwise making myself the cleanest in weeks. Being clean is such a big part of your self esteem.

Now able to wear normal clothes, I would take walks that weren't so embarrassing anymore. The physical therapist would visit and move me through specific exercises. The home nurse would draw blood and measure the effectiveness of my blood thinners. My family and friends would visit. And I was able to spend more time sitting in the chair than laying in bed.

Ah, the chair. On the day I was coming home from the hospital, Kate had gone to the furniture store to buy me a new leather chair to make me more comfortable at home. But the store staff couldn't fit the chair into her Mini Cooper. (Duh.) So she returned home and took Stephen's Honda CR-V back to the store. The only problem: the store was closed and no one was around. Not to be deterred, she broke into the warehouse, grabbed the chair, put it in the car, and peeled off for home. A criminal in the service of a cancer patient! To be clear, she had paid for the chair. But a break-in is still a break-in.

Kate's actions are a great example of how caregivers don't give a damn about rules when it comes to helping cancer patients. This mentality explains the use of things like medical marijuana that are effective in providing relief, but are not necessarly legal. It's pretty simple: who cares about legal consequences when you're staring at death? And yes, the chair is very comfy.

I would return to the hospital bed at night. Since my neobladder was smaller than what it replaced, Schenk has told me to empty the neobladder every two or three hours. Also, I discovered that my body would leak even after the drains had been removed. So I was up a lot. I took advantage of the technology in my family room, and watched Netflix through my Apple TV. I discovered the show "Frasier," which I had enjoyed when it originally ran. Since I wasn't going anywhere anytime soon, I started at episode 1, season 1. I had forgotten how so much of the dialogue was filled with one-liners that make you laugh. And that's exactly what I did.

Except this time, unlike the original broadcasts, my laughs were accompanied by screams. Each time I laughed, I pulled at the stiches that littered my stomach. And it hurt. So, "hah! hah! ouch!" became a regular noise in the wee hours of the night. Kate heard so many "ouches" that she thought I had a real problem. She came running downstairs, and asked me what was wrong. When I told her the show was making me laugh but also hurting me, she just rolled her eyes. "Just turn the show off," she said. Hmm, I hadn't thought about that.

My brain wasn't the only thing that wasn't working so well. I was still extremely weak. It became obvious how the disease, chemotherapy, surgery, embolism and possible stroke had ravaged my body. My legs had no muscle structure. I struggled to raise my arms. My endurance was zilch. It dawned on me that all that work I did before chemo to strengthen my body likely had saved me. Imagine if I had been weaker, older or with other medical complications? Cancer and its treatments would have torn me apart.

There was another complication. Adjusting to this thing called a neobladder. It's only something you have to deal with the rest of your life. Oh, my goodness.

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