29. Adjustment

Cancer survivors are different than other people. Not better. Not worse. Just, um, different. Many cancer survivors, and others who have had serious medical problems, live in a world that few others we know have experienced: what it's like to face the prospect of near-term death, and then been given a (temporary) reprieve. The short-hand I use to describe my situation is Life 2.0. It is life, of course. But, to use a sports analogy, it's a whole new ballgame.

People see me now, see that I look just about the same physically, and conclude that my life has been restored to normal. They don't see the body parts that are no longer there, leaving me with alternatives (if that) that sometimes can be a struggle to use. They don't see the mark left by the experiences I endured just to have a shot at life. They think of me as cured, when I actually live with the threat of recurrence.

In this sense, I am not surprised nor judgmental. What I have noticed is that people tend to think linerally and in relatable categories. When they see cancer survivors, they see our life arc as Normal, Crisis, Normal. This is the only way they can relate to us. They understand Normal, as in our lives pre-diagnosis. And they understand Crisis: an event has occurred, and it is bad. They get that, if only from a detached point of view. When they see you again, with you having emerged from crisis, they relate to you as back to normal. That is their frame of reference. When colleagues at work ask me how I'm doing, I sometimes reply: "Well, I'm still here." To them, "still here" means still at the company, and they nod. I actually mean something quite different.

These and other people are unable to see that I live in a different category now. Physically and mentally, I am in a space that is not Crisis but is not Normal. For lack of a better word, I call it Adjustment.

Physically, the illness and surgeries have imposed life-style changes. Certain bodily functions are more complicated to perform than my previous normal. My body is more prone to infections, dehyrdration and weakness. Mentally, sometimes I am brought back to that terrible time, triggered by learning of another person with cancer or, innocently enough, the sound of an advertising chime I heard a lot when I was sick. For a moment, my body tenses up and my heart beats a bit faster.

Another difference from Normal: since I must deal with the possibility of recurrence, I go through more medical scrutiny than others. Since my new systems malfunction from time to time, I see a lot of medical mechanics in white coats and blue gowns. As a result, I spend more of my time at the doctor and hospital than, say, the latest happy hour.

For instance, in 2013, I had 56 medical appointments. Some were routine, involving blood draws for the millioneth time. Others fixed, or attempted to fix, a problem or side-effect. Still others were one of many addressing a bigger problem, which culminated in yet another surgery. Case in point: in the fall of 2013, I suffered from a urinary track infection, a common and sometimes serious side-effect of my condition. Perhaps coincidentally, at the same time, my neobladder stopped working altogether. Welcome back to the hospital.

Other appointments have been easy on the body, but tough on the mind. Each time I visit the oncologist or surgeon, I sit in the waiting room and a weird feeling comes over me. Memories of the past. Then, when I meet with the doctor, I hold my breath before I hear the results of the latest body scan or blood test. The doctors even want to know about seemingly normal aches and pains, because some can be an indicator of recurrence. And, inevitably, I am sent for more tests. The Circle of Life. I can see how some cancer survivors become hypochondriacs.

Still, there have been lighter moments. At a recent visit with my oncologist, he said that if my remission continued another year, my odds for long-term survival jump to 75 percent or so. Hey, that's great, I said. But...weren't we talking about the same odds a couple years ago, only in the negative direction? Do I get to choose which 75 percent I believe in? Whatever happened to that "statistic of one"? He smiled. I smiled. But we both knew.

This is kinda the life I now have. I don't recount it here to complain about my condition. After all, I have been given a shot at extended life. And that's been worth all the suffering, trauma and life-style changes I've had to endure. Instead, I recount all this to explain how I, and possibily others like me, live in a stage of life, Adjustment, that exists somewhere between Normal and Crisis.

Others cannot really process the concept of my adjustment, mostly because it requires a rather extensive knowledge of the situation and the abiity to relate to it. To many outside my circle of family and friends, they cannot relate to the former, and they have strained capacity for the latter. The result: many casual relationships, those formed by common experiences or interests, have become weaker. We simply have less in common.

The flipside: my relationships with family and close friends have become stronger. I'm more engaged in others' lives, and they with me. Recently, Stephen suffered a concussion, believed it was 2012 and not 2014, and worryingly asked Kate, "Where's Dad?" thinking I might be in the hospital or worse. (He's better now.) It tells you a lot when that's one of his initial thoughts during an experience like that. For me, I spend much more time thinking about how I can help my boys transition to adulthood.

Also, I have this newfound ability to relate to people with medical difficulties. Indeed, friends seek me out just for this reason. I've joined the club of cancer survivors, and developed a nice bond with them. Compared to others, we speak a different language, focus on different things, and gain enjoyment from different experiences. As I've mentioned before, cancer survivors are a great club to belong to, but you don't want to pay the admission fee.

So my experiences have shifted the composition of people I interact with and where I invest my energy. Much less involvement with a large number of situational relationships based on experiences that are no longer important to me. Much more with those inside my extended family, select cancer survivors with whom I share a new bond, and new friendships I've developed during my recovery. The common threads? Less time spent on transitory matters. More time spent on fewer, core matters of life and how to live it.

Another change: changing for change sake. When Kate floated the idea of moving to a different house, I thought about the economics of the decision but also about leaving behind the past. We moved. When I looked at my car and its maintenance costs but also its own illness-laden memories, I did exactly the same thing. Gone. One area I decided to keep for a time: work. When I went back to work in 2012, I knew I needed to remain at the same employer into 2014. Then, and only then, would I, as someone with a pre-existing medical condition, no longer risk being denied health insurance if I changed employers. (Obamacare created this new protection.) Now the calendar has turned, opening up options for me.

Life 2.0 is about building a new life, embracing a new appreciation for it, and introducing change where and when I can. It means carefully selecting which elements of my past to bring into my future, and closing the book on everything else. But all these decisions and changes don't happen all at once. They take time. In this sense, Adjustment seems like a transition state to something better. I haven't fully gotten there yet. But when I do, I'll let you know what it's like.


28. Reminded

Every time I hear about it, I'm reminded

Every time someone dies from it, I'm reminded

Every time I go to the doctor, I'm reminded

Every time I see my scars, I'm reminded

Every time I get a pain I can't explain, I'm reminded

Every time I pack my bag for the day, I'm reminded

Every time I visit the restroom, I'm reminded

Every time I prepare for bed, I'm reminded

Every time I wonder what survival odds really mean, I'm reminded

Every time I realize I can fall asleep now, I'm reminded

Every time I go to an event I couldn't before, I'm reminded

Every time I see beauty in the sky, I'm reminded

Every time I exercise my weakened body, I'm reminded

Every time I see how Kate still bears emotional scars, I'm reminded

Every time I'm alone in the house, I'm reminded

Every time I lay awake in the dark, I'm reminded

Every time I talk to God, I'm reminded

And I wonder if it will ever leave me


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.


26. Is It a Gift?

Not exactly the word I would use to describe cancer. But I see her point. 


25. Getting Out

After a scary experience with blood gushing out of my neobladder in early 2012, I had a breakthrough. For the good. I haven't said those words a lot. A couple things began to work in my favor and permanently shape my adjustment to a new lifestyle.

First was talking more with Rhonda, Dr. Schenk's nurse. Rhonda is one of those people you come across when cancer strikes. She's understated, sympathetic and knowledgeable. And she keeps Schenk focused on the immediate task at hand. In turn, Schenk mentors Rhonda on all aspects of medical treatments. For instance, when Shenk performs cystoscopies, after he examines me he has Rhonda take a look through the tubular camera as well. It's easy to think of Rhonda as a kinder, gentler version of Schenk. By this time, Rhonda had become a go-to person for my medical treatment.

Rhonda explained how to manage muscus production in my neobladder. This had been my big enemy in adjusting to a new plumbing system. Namely, the neo would continue to act like the small intestine it formerly was and produce muscus. Lots of muscus inhibits the ability to void a bladder, and can be addressed only with catheters.

Before I had surgery, I didn't really focus on this aspect of the neobladder. Now, I could harly avoid it. Each time I would go to void my bladder, I would take a deep breath and hope that the darn thing would work well -- a feeling that continues to this day. When the neo worked, it became a highlight of my day. When it didn't, I would sigh and wonder whether the extended life God had given me meant a life filled with struggle.

How could I manage my way through all this? Well, different drinks and food groups affect muscus production, Rhonda told me. Dairy products are the worst, with sodas and coffee having a somewhat lesser effect. In other words, many of the things I normally consumed would have to go. Argh. Still, go they did.

And things began to improve. Nowhere near normal, of course. Let's say my condition improved from pure grief to difficult. Not exactly the kinda change that makes you jump for joy. But it was enough progress to free me to do something else: get out more.

My first big outing: a concert featuring the Smithereens, one of my more favorite power-pop bands who were popular in the 1980s and 1990s and now represented one of the best bar bands anywhere. For the past several years, Kate and I had made an annual ritual of going to see the Smithereens at the State Theatre in Falls Church, Va., my hometown. This year, we were able to attend the band's soundcheck before the show. Dennis Diken, a drummer in the mold of Keith Moon, stopped by to chat. When I told him about the importance of this night, he was incredibly warm and supportive.

Before and after the show, I also met others who were either battling cancer or who had lost loved ones to it. It's like cancer is a force that organically connects people with each other. The whole evening, filled with singing, dancing, drinking and conversation, reminded me how wonderful a night out could be. Another step in my recovery.

Next up: nighttime classes at Johns Hopkins University. Again, one aspect of being a cancer survivor is deciding which aspects of your past to bring with you into the future. Before my diagnosis, I had been pursuing a master's degree in American Government at Johns Hopkins. But now, in recovery from cancer, my heart wasn't in it. Kate convinced me otherwise. "Finish what you started," she implored. Indeed, I had only one class remaining, which was intended to complete the full thesis.

Doing so meant getting comfortable with the idea of bringing my bag full of applicances with me. I knew I would have to adjust sooner or later to this new lifestyle. And Hopkins classes seemed like a good way to start. Once in class, my mind began to reengage with subject matter that I hadn't thought about it quite a while. That part of my mind began to wake up, if you will, from a long slumber.

The Hopkins community was incredibly supportive and generous. Professors I had known from pre-diagnosis days, such as Dorothea Wolfson and Tom Stanton, welcomed me back with open arms. We spent time discussing the contruct and merits of my academic arguments, as well as catching up on the events of the past year. With their counsel, I completed my thesis on the future of the U.S. housing finance system.

The faculty was kind enough to give me the award for best thesis in public policy and administration. At the graduation ceremony, Dorothea recounted not just the focus on my thesis, but my illness as well. To top it off, she described how I had submitted a paper soon after I was diagnosed with the plea, "Go easy on grading the guy in chemo." Fellow graduates around me chuckled, with one telling me he wished he had thought of that ploy. A good experience.

Then I began to stretch myself. Before my illness, I had been a season ticket holder to Washington Nationals baseball games. And Kate and I woud occassionally go to Baltimore Orioles games as well. But during my illness, I couldn't attend many games at all. Now, as my body began to piece itself back together, I wanted to change that. In fact, I set a goal to attend more games than ever before.

First, I needed to change my seats. Up until now, we had sat in the cheap seats. But with a neo, I needed access to better-quality restrooms, which meant buying expensive seats on the club level. And these seats came with a minimum of a 42-game plan, more than double my prior plans. Translation: a lot more money. Kate and I discuss any purchase over $500, and this was many, many times that amount. In years past, she would frown on things like this. When I ran it by her, and explained why, she just said, "Do it." Hmm, maybe I can get something extra out of this cancer thing!

Lucky for me, the year I had chosen to attend lots of ballgames came during a season in which the Nationals, a traditional doormat in its division, posted the best record in all of major league baseball and made it to the playoffs for the first time. It was such a sharp reversal that Michael, my usual baseball companion, couldn't bring himself to invest himself emotionally in the Nats because, he feared, they would only return to form and break his heart. By late summer, when the team was cruising in first place, I told him, "Michael, I think you can like these guys now."

He did, and he got to see his first playoff game. I spent the remainder of my time at the park with Kate, creating a post-crisis relationship with her, if you will, as well as many other friends who I hadn't spent much time with since becoming ill.

One of my favorite moments occurred when the Orioles came to Washington to play. Now, Kate is more of an O's fan than a Nats fan, and normally there's no real conflict there. Except when they play each other. So she wore her Orioles garb at the game. This caught the attention of Mike, the usher in our section and a prince of a guy, who seated me promptly but couldn't locate a seat for Kate. "No seats here for Orioles fans!" he exclaimed. Once finally seated, Mike just ragged on her the entire game. We laughed our way through it all.

A touching moment occurred at season's end. Mike introduced us to his fiancee and his grandson, who was just a few months old. Never have you seen a person smile with such joy as Mike did on that day.

From a sports perspective, emotions flowed the most in a playoff game when Jayson Werth hit a walk-off home run in the bottom of the ninth inning to win that game for the Nats, forcing an elimination game the following night. Then, on that next night, with the Nats one strike away from advancing to the next round in the playoffs, Drew Storen, the relief pitcher, failed to hold the lead and lost the game for the Nats. And the season ended right there.

From utter joy to utter depression in less than 24 hours. An emotional roller-coaster, it was. But as we left the ballpark for the last time, I reflected on it all. Now many months removed from a life-threatening illness, I was actually able to feel emotions that had nothing to do with cancer. I was able to begin rebuilding relationships with those I cared about and who cared about me. I was able to meet new friends.

Yes, I was still struggling with the longer-term effects of cancer. But I was moving forward. I was building a new life, with a new set of experiences. As we walked to our car, I looked up with thanks at the crisp October sky, held Kate's hand, and said, "Next year will be even better." And I wasn't talking only about my baseball team.