Saturday
Apr202013

27. Role Reversal

Kate and I were up early this particular morning, Time for another drive to the hospital. Yet another surgery.

As the car motored down the road, I wondered how the surgery might go. How long would it take? Would previous problems make the surgery more difficult? What kind of recovery are we looking at?

This surgery was to be done at Fair Oaks hospital in Fairfax, Va., and not at my usual haunt, Loudoun Hospital. So it took a while to figure out where to park and, once in the hospital, where to go. But cancer patients must have a kind of GPS in them, pushing them to the right places no matter the hospital. And so it was in this case.

Lo and behold, there was the surgery area. A bit nicer than the one at Loudoun Hospital, but largely the same. My sister Cathy was already there, sitting in the waiting area, reminding me of that night, after my major surgery, when I awoke oh-so-briefly in the ICU to see her sitting next to my hospital bed. Soon, Cathy would be joined by two more sisters, Chris and Joan. And then my mom emerged from behind a door. A family affair, to be sure.

As a group, we talked about the surgery. If no complications reared their head, it could be a pretty straightforward one. Of course, the last time I had that thought before a seemingly easy surgery, Dr. Schenk came out of the operation concerned that my cancer had returned. So in our family conversation, I didn't take anything for granted. And neither did anyone else. My mom's face looked especially worried.

Now, it was time to prep for surgery. Time for us to part ways. Only this time it was not me walking through that door that said "patients only." It was my mom. For this surgery was to be not on me, but my dad. My role, as well as my sisters', was to sit in the waiting room until everything was done.

What led us to the hospital this day? Several weeks back, my dad had herniated a disc in his lower back, causing incredible pain that began just above his bottom and ran all the way down one leg. I knew of this feeling, having had two back operations. I reached out to my mom, explaining that if the surgery went as planned, my dad could well wake up and discover the searing pain completely gone from his body.

My dad had already lived an amazing life. He, like my mom, grew up during the Great Depression, an experience that forever shaped their outlook. Once World War II broke out, he volunteered for the Navy, offering his expertise as a medical doctor in training. Providing medical care to returning servicemen also would define my dad's future. Once the war was over, he finished medical school, with my mom the chemist as the bread winner during this time, became a neurologist, and joined the Veterans Administration hospital system, where he spent the totality of his professional career, initially in New York where my parents were born and raised, briefly in Philadelphia, and then for 50-plus years in Washington, D.C.

During his career, my dad specialized in medical care for patients afflicted by multiple sclerosis, or M.S. for short. He conducted studies spanning decades and decades, offering a rather novel conclusion that M.S., long thought to be a hereditary disease, also could be contracted through a virus, a finding that still sparks controversy in the medical community. As part of his research, he developed a scale to help physicians match specific forms of treatment to specific stages of the disease, which is progressive. The scale, known as the Kurtzke Disability Scale, is one of the standards in medical care to this day.

I first learned of my dad's scale during remarks made by colleagues at his retirement ceremony. Having fathered eight children, I thought the scale referred to the dysfunctionality of his offspring. When I mentioned this to him later, he smiled and looked out in the distance, as if intrigued by the notion. But, no, he reminded me, it was indeed for something else.

My parents have quite the relationship. It's hard for me, or any of my siblings, to think of one without the other. When I had cancer, and in the Zombie-like state caused by chemotherapy, Kate took me over to my parents house. It was a quiet night, with few lights on, due to the light of the long summer day, and barely a noise to be heard. My mom, of course, made dinner for all of us, of which I ate very little. This being my first foray outside my house since I began treatments, I could barely hold myself up in a chair. But what I witnessed was special.

My parents talked of the days early in their marriage. Their first apartment, which was not elaborate. Their first dinners, even less elaborate. Their definition of entertainment, which hardly lived up to the word. Throughout the talk, I saw on display the special connection that my parents have with each other. The affectionate glances, the warm touches, the harmless rolling eyes, the gleeful laughs. These two have lived a life many of us would envy. It hasn't been always easy, far from it -- I always wondered how my parents raised so many kids on a public-sector salary -- but their love is very real. And it has made everything they've done together possible. My mind could barely process anything that night, but I did process that.

Because I had gone though the pain and treatment that my dad was now experiencing, in the weeks leading up to surgery I would counsel my mom on how to help my dad. Make sure he took the steroid pack, the initial treatment to relieve inflamation around the nerves. If this doesn't work, the doctor will send dad to get cortisone injections directly into the affected area. Three sessions is the rule of thumb, and don't put off any session.

If the injections didn't relieve the pain, get surgery scheduled as soon as possible, I urged. For goodness sake, don't wait. In my first back surgery, which plagued my mid-1990s, I waited way too long and ended up with permanent problems. But in my second, 10 years later, it could not have gone any better. That's because I didn't wait. What's more, the surgeon who would operate on my dad is the same who gave me relief years before. So, mom, you should feel good about that.

Throughout my dad's painful ordeal, I found myself playing a very different role. No longer the patient, I was the advisor and comforter. Actually, my brother Bob, the second neurologist in our family, my dad being the first, was the true advisor. His help, indispensable as always, came in the form of telling my folks the standard of care and getting my dad to see his friend and surgeon, Dr. Tushar Patel, as quickly as possible, no small feat in our modern-day medical system.

My advice, though, came from experience as a back surgery patient, perhaps the first time in a long time that I thought of something medical without cancer being the subject of it. A different, and welcome, experience, to be sure. Of course, what I didn't know was how a patient 86 years old would fare once his body was cut into. My dad, not uncommon for someone in these elder years, had medical issues that could complicate the surgery. A respiratory system weakened by Legionnaire's pneumonia, which had almost killed him. A pulmonary system plagued by embolism. And the natural erosion of protective muscle that affects someone advanced in years.

While I thought the surgery could be pretty straightforward, the worried look on my mom's face was an informed expression of caution. My mom emerged again, which meant that my dad had been wheeled out of the prep area, down the hall, and into the operating room, a route I knew well by now. Together, we sat and waited.

People in the waiting room have a different experience than the patient, of course. You're awake, obviously, and not put to sleep, much less have your body opened up. It seems odd to talk about something else, because something else pales in significance to what is occurring on the other side of that door. Some walk around or pace. Others grab a bite to eat, which makes sense since many surgeries are performed during breakfast hours. But, mostly, people just try to make time go by. No rhyme or reason to how. Just that it occurs.

I reflected on a prior hospital stay of my dad's, when he barely escaped from pneumonia. One night, he coded, and as luck or God would have it, right at the time that Bob had stopped by. Bob immediately summoned the doctors and nurses, stabilized my dad, and rushed him down to the ICU, where he was sedated and a breathing tube inserted into him. Days later, the doctors woke him up and removed the tube. But they didn't know for sure whether my dad had suffered any lasting damage.

"What's your name?" "Do you know where you are?" they asked. Groggy and sore, my dad struggled to respond, which slowly improved with time. That's the thing about patients under sedation or in pain, our mind doesn't have an on-off switch -- it's more like a slow, gradual focus, much like adjusting a picture with a camera, and that's if you're lucky -- a fact seemingly ignored by doctors everywhere.

Later, I asked my dad, "Who is President?" He turned his head, contorted his face, and said "Clinton,' which was correct, followed by a loud belch. I took that not as a sign of the pent-up air in my dad"s body, but as a political comment, he being no fan of the White House occupant, "He's fine," I concluded.

Back to the present day, about an hour had gone by, and Dr. Patel came through the door. Tushar is a handsome, tall, dark man. So much so that one of my woman friends seeks out Tushar every time she has a orthopedic problem. The verdict? Surgery is complete, my dad is resting, and the nerve pain likely is gone. That's all good news. But he wasn't finished.

One problem occurred during surgery, which will affect my dad's post-op treatment and recovery. To get to the disc area, Tushar had to retract a layer of protective material around the spine, which upon touch tore open and disintegrated. That was the wild card of operating on someone so old. Just plain wear and tear. The tear resulted in spinal fluid being released, which in a healthy person remains sealed in a sack.

The impact: my dad had to lay absolutely flat on his back for several days, with any incline in his bed to carefully managed, initially by nurses and later by my mom. But, after a while, the sack, put back together by Tushar, should heal and my dad otherwise okay. So, good result with a curveball, if you will.

Tushar wasn't finished. Now, it was the two of us talking about my condition. For the past several weeks, I had experienced an odd pain in an odd part of my back, roughly in the middle and to the left. It occurred when I voided my neobladder. The pain was not as severe as my dad's, just a twinge. I thought it was just a muscle pull related to learning how to use the new contraption in my pelvic area.

However, pain around the spine or kidneys is not something that doctors take lightly with a cancer patient. So I was put through a battery of tests, which identified something called an arachnoid cyst, which on the c-scan looked like a piece of Lego lodged next to my spine. I talked with Tushar about it over the phone a few times, and was examined by his physician assistant. He didn't believe the cyst to be cancerous -- good -- but to remove it, if it needed to be removed, would not be easy. Rather than go through my back, as with other forms of back surgery, instead my chest would be cracked open. Not good. But Tushar would have the final say.

In the waiting room, we stepped aside from my mom and sisters to discuss the situation. His conclusion: no need for an operation, no need for worry. The pain would likely go away on its own, which happened almost once he commanded it, and the cyst likely would not grow in size. If either happened, he'd revisit the diagnosis. But in the meantime, enjoy the fact that "you're one of us." One of us? Initially, I thought he was referring to being a friend of Bob's. But then he looked at me in the eyes a bit longer and finished his thought: "among the living." I hadn't talked with Tushar while I was coping with cancer. But he kept asking Bob about how I was doing. Today, he could finally express his support in person.

Relieved that I still belonged to Tushar's club, it was time to check on my dad. As I approached the doorway, I could see my dad, laying flat on his back, as directed, and my mom helping him drink. It was odd to enter a hospital room with the bed intended for someone else. But then I realized why I was there: to provide comfort and reassurance to my dad. Quite a role reversal from my prior hospital time.

He was still foggy from the anesthesia, and still deaf in one ear, a condition outside the scope of this particular surgery. I leaned over him and began to talk through his immediate recovery. Was the back pain gone? Yes, he thought. That's good, it means the surgery worked. From here, his focus needed to be on protecting his spinal sack, of course. After that, it meant building muscle strength around the disc, which would take time, so don't rush it. But he should be up and dancing afterwards, which made him laugh.

He needed to void his bladder, but my mom struggled with helping him. Hey, I know this stuff pretty well, I thought. So I gently took the pee bottle from my mom's hands, and proceeded to do what needed to be done. I cleaned up, my mom placed my dad's sheet back over his upper body, and he looked relaxed.

Then he talked about my recovery. His spoke with true wonder about how surviving advanced bladder cancer and having a neobladder inserted into my body was "a miracle." This was not the first time he expressed this sentiment to me. But it was clearly important for him to say at this particular time.

I responded by telling him what I learned. I had confronted the prospect of near-term death, and been given a reprieve. But I know I'll be back there again, hopefully not for a while, and the big task for me was making good use of the days in between. I don't want to waste a single day. My dad, 86 years old and weak from surgery, summoned enough strength to make a point. With eyes glistening with emotion, he touched my hand and said: "I still have things I'd like to do, too."

Yes, you do, dad.

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