Sunday
Apr082012

11. One Year

Until now, I've recounted my experience with cancer in chronological order. That's the best way to tell and understand a story. However, this blog post is an exception. That reason: it's been one year since I was diagnosed with bladder cancer. Thus, it's appropriate to break from the chronology to share lessons learned from my experience to date. After first being told that I had a life-threatening disease, I have learned many things and they are all important. So don't consider how I articulate them to be a rank ordering. They all shape the person I have become.

For starters, I have a much better appreciation for the daily wonders of life. Everyday, I tell God how grateful I am to have another day. Everyday, I think about how much I love my wife and family. Everyday, I marvel at the beauty of the sky and landscape as I drive in my car. All this might sound corny -- and before my diagnosis, that's what I would have thought, too -- but emotions can be powerful motivators in your life.

I certainly don't fret about many of the issues that I used to worry about. For instance, if it takes me a while to get ready in the morning -- and it often does -- I don't worry about being late to work. Hey man, I think, there are priorities in life. And getting my body ready to go takes longer than before my diagnosis, so deal with with it.

That feeds into the next lesson learned, which is probably all too obvious. I have a much better perspective on what is and is not important to me now. Or, rather, I have a better sense of priorities. My health. My family. My relationship with God. Things that I enjoyed in the past now I really want to enjoy. On the flipside, I now know what it's like to come close to death. Even though I don't look forward to it, I know I'll eventually be there again. And that makes me a very humble person.

Kate frequently asked me why I never got angry about my disease. After all, I never smoked and yet I still came down with stage IV bladder cancer. (The doctors aren't sure what caused my cancer, although my exposure to second-hand smoke raises a red flag.) I would feel sorry for myself from time to time, but I don't really know why I never got angry. Instead, my thoughts were more on another feeling: I felt I had taken a lot of things for granted in my life, and my cancer was a wake-up call to stop doing that. Message received. I now know that my life means loving Kate as much as I can, helping my kids grow up into adults who can build lives and pursue passions of their own choosing, and to be a bigger part of the lives of my extended family.

In addition, I think one reason why God let me live is to help others facing cancer. And the best way for me, a professional writer, to do that is to tell and share my story with cancer patients. That's one reason why I started this web site and post my blogs on community support boards such as the Bladder Cancer Advocacy Network. I'm so pleased that people have told me that my experience is helping them in some way. If that's one purpose of my life going forward, I embrace it.

What else did I learn? Well, and I can't underscore this enough, cancer patients need a tremendous support network to help them survive. Doctors, nurses, other medical professionals, family, friends, neighbors and more. I've blogged recently about how my family and friends have helped me. Their outreach has left a lasting impression on me: there are far more people who care about me than I had recognized before.

Of course, there's Dr. Schenk, who scared the living daylights out of me with his words, but his actions literally saved my life. The nurses in oncology, urology, telemetry, family practice, ER, surgery and post-surgery have made the biggest impact on me. These are people who don't get into nursing to get rich; they do it because they get satisfaction from helping others. And they help you when you are most vulnerable. Just thinking of them makes me tear up. I love each and every one of them.

Since I'm on medicine as a topic, access to high-quality practioners, treatments and facilities is something that everyone should have. I have been fortunate in that my health insurance coverage is incredibly generous. But others are not so lucky. The cost of my many procedures has been in the hundreds of thousands of dollars. But I have come across others whose health insurance isn't so generous -- either because it doesn't cover specific drugs or procedures, or because coverage is capped at a certain dollar amount. For a modern society like ours, that's sinful. Thus, universal health insurance has become an issue about which I am unyielding.

In addition, I, like many others, now have a pre-existing condition. So when I ultimately leave my employer and have to go into another, employer-directed health plan, I am at risk of not being covered should my cancer recur. The federal health care law approved by Congress a few years ago gives me that protection. So political candidates and Supreme Court justices who want to repeal this law earn my emnity. Whatever happened to the old saying, walk a mile in another man's shoes? To the extent that I am active in political affairs, getting people like that out of office will be my permanent cause.

Now that I've got that off my chest, a few words on the horrible effect that treatments and radical surgeries can have on your body. When Dr. Schenk first walked me through his plan of action, I thought that there's no way I could endure all that. Indeed, chemotherapy hits your body and mind like a ton of bricks. And that turned out to be a walk in the park compared to recovering from surgery and all the complications that set in. But here's what I have learned: people have an inner strength in them that they don't know exists. That's because it lies dormant until you really need it. I found mine. And if you're unfortunate enough to be facing cancer, I am here to tell you that you will find yours. You can get through this. You can survive. You can build a new life.

Your mental attitude will determine a lot of your strength. One way I thought positive: I descibed chemotherapy as "medicines," ones that would cure my body. I saw my survival odds on the Internet -- and they weren't good -- but the doctors and nurses told me to think of myself as a statistic of one. I was younger, stronger and healthier than a typical bladder cancer patient, so don't let depression creep in. I survived surgery and its many complications by focusing on the immediate task in front of me, whether that was cleaning my body from leaking drains, to drinking healthy fluids, to pushing myself to walk around the hospital ward. Don't think for a minute that you can't do the same thing; you can. And you will.

Lastly, I discovered that recovery doesn't happen all at once, nor in any single dimension. For instance, there is the immediate, post-surgical phase. This is incredibly difficult, to be sure. Pain radiating throughout your body. Drains leaking all over the place. Clogged drains creating acute, abdominal pain. Sleepless nights. Collapsing veins from the daily blood draws. Irrigating drains became a many-times-a-day experience. Kate became such an expert at this that she would instruct nurses in the hospital on how to do this.

Getting home helps so much with your recovery, probably more mentally than physically. But drains will be with you for many weeks. Learning how to use a neobladder was the next stage of recovery. Let's just say this did not go as planned. Oh my God, what had I gotten myself into? Problems and complications will rise. And you have to develop new skills, from using catheters to removing mucus blocks through irrigation. Doesn't sound pretty, but as Dr. Schenk reminded me, "You can be around to deal with issues like this, or not be around." Okay, he's right, of course. But why is it so damn difficult?

Rebuilding strength in your body in yet another phase of recovery. You need to push yourself to get outside and take walks. My initial walks were while I still had several drains in my body. So I tossed on a bathrobe, hung the drains on a walker, and proceeded to walk my street. Not very pretty, that's for sure. But I did it. I also went through extensive physical therapy to rebuild muscles I had lost, from my quads to my arms.

That's the physical side of all this. But recovery is not so uni-dimensional. One of my nurses, Leigh Ann -- who became so important to me -- told me there are three dimensions to recovery: physical, emotional and spiritual. And don't sell any one of them short. She is so right. Kate would help me emotionally by taking me out on long drives through the mountains. This was during the fall of 2011, when the colors were peaking, and she drove her convertible Mini Cooper with the top down. Feeling the breeze, seeing the colors, looking at the sky, listening to music combined to create an enormously liberating feeling inside me. I felt glad to be alive.

Spiritually, I became a lot closer to God. Not in a religious way. I had been raised Catholic, but didn't belong to that church anymore. Still, I talked with God much more frequently than before. Some of my talks obviously were about giving my strength to get through all of this. Other talks, though, were about my family, the beauty of each day, and a deep appreciation I had for continued life. I felt lucky to be alive. I felt humbled to have so many people rooting for me. I felt blessed. Truly blessed. And maybe that's the biggest lesson I have learned so far.

Cancer has given my new life. And I plan not to waste a minute of it.

Friday
Apr062012

10. Prison Break

Back to oncology on June 17. By now, I had stopped taking Xanex. It was incredibly addictive, and I suffered really bad withdrawl. Without it, the tingling returned. But there was no way I was going back to that drug. So here I was, back at oncology, my tingling self. This session would be a short one, with only Gemzar being injected in me. That Friday was special for another reason. It was the first day of summer break for Kate and the kids. What did that mean? No more being alone in the house for most of the day. It also meant something else. More time out of the house.

Up until then, I had limited time outside. I had made a routine out of getting a light breakfast at the local Starbucks. Stephen worked there, so many of the staff knew about my cancer. Their way of helping: they didn't charge me for food or drink. That was incredibly nice of them. I also would force myself to take daily walks. But aside from the Starbucks run and my walk, I didn't have the energy to venture outside much.

Kate changed all that for me. She knew that the house had become a prison for me. So she took me out on long drives. She would drive us through the Blue Ridge mountains, into rural Virginia, West Virginia and Maryland. My neck was sore from a deep muscle spasm caused by my anxiety. Still, as the passenger, I got to look around as we drove. And I was struck by the beauty of the mountains and the quaintness of small towns.

As we crossed the Shenendoah River, I was reminded of the John Denver song about West Virginia, "Take Me Home, Country Roads." When I was a kid, my family would vacation in West Virginia. Every summer. And each summer, I would hear that song. Many times. Everyday. I got sick of that song. But now, decades later, the song was comforting, reminding me of the innocence of my youth.

That kind of music wasn't on our radio, though. Instead, we listened to the First Wave station on satellite radio. Mostly '80s music with a deejay, Madison, who became a daily voice in my life. Kate would get her daily fix of Elvis Costello and smile. She has such a pretty smile. Kate would push me harder by taking me on errands, We would shop at Wegman's, where I walked very slow and leaned on the shopping cart to keep me upright. I would refer to these outings as my Wegman's Walks.

Even though we were shopping for food, I still wasn't eating. A couple years ago, my weight had ballooned, and I worked hard to drive down that number. Since then, I had lost 40 pounds. Then, after the start of chemotherapy, my weight began dropping like a rock. So much so that the oncology nurses were concerned about my loss of physical strength. They were spot on. I was feeling weaker by the day. My muscles were fading fast. But I just had no appetite. One day I entered my weight into the iPhone app I was using, and the app rang like a bell. I had met my goal! the app exclaimed in celebration. What a cruel irony. Because it surely was no time to celebrate.

On June 24, I limped into the final session of my second cycle. By this time, the roof of my mouth had thinned considerably. Anything slightly warm was burning hot to me. Another side effect: water began to have a metallic taste. So I switched to sodas and iced teas, but couldn't avoid water altogether. To keep my kidneys functioning, I had to keep the water flowing and tolerate the taste. Yuck. This trip to oncology was just for a blood test, but I felt exhausted. All I could tell myself was, "I'm two-thirds of the way through chemo." That motivated me for a while. But then I thought, what if it doesn't work?

The third cycle started the following Friday, July 1. Just get through the two tough sessions upcoming, I thought, and I will have survived chemotherapy. Whether I would survive for real was another thing. But my focus was on this particular session. Again, I felt like crap. Patience injected her drug cocktail to boost my energy and lessen my nausea. And I settled in for another marathon session, this time with Kate by my side from the outset.

My sight had been blurred by the treatments, so I couldn't read on the iPad. What I could see: others were faltering from the treatments, too. An elderly woman who I had seen often at oncology failed her blood test. Her platelets were dangerously low. So low, in fact, that she could not receive treatment and had to be transferred to the hospital for a blood transfusion. Another guy about my age was in terrible shape. too. He was extremely weak, sweating profusely, with a wet towel wrapped around his head, his upset stomach getting the better of him, with his wife, Dr. Moreas and the nurses trying to help.

With cancer patients, misery doesn't love company. After going through chemo, you don't want anyone to go through these kinds of struggles. That day, I learned that chemo treatments are an endurance contest, and often the chemo wins.

Once back home, my paranoia went into high gear. The ungodly hot summer -- the temps soared into the 100s for weeks on end -- spawned torrential rainstorms every afternoon. I was scared that our power would go out, the house would heat up, and I'd be in the dark. Every afternoon. I looked at the radar on the weather app and the outage map at the power company, and prayed that we would be spared. I would check again and again.

For anxiety. Dr. D. had prescribed paxil. For sleep, ambien. Maximum dosages, of course. I worked hard to try to get to sleep within 20 minutes of taking ambien. Otherwise, it wouldn't help. The drug did give me an extra hour or two of sleep, but still well short of a regular sleep. Paxil helped with my fast heart rate, but it took several weeks for it to have any effect. At the time, I thought, I couldn't wait several weeks!

Then it was back to oncology on Friday, July 8. My last marathon session. Knowing that gave me the strength to get out of bed, be driven to the hospital, and collapse into the chemo chair. I felt awful. I was so weak that Dr. Moreas had to examine me in the chemo chair rather than in a patient's room. As I sat there, I had one of my many talks with God. Why did I need to go through this agony? What did I do wrong? If you wanted to send me a message about my life, couldn't you just drop a note in the mail? I would have read it. The old saying is that God works in mysterious ways. Well, his mysterious ways were making me miserable.

Marla, my nurse for this session, brightend my mood by taking my mind off the treatment. She had just returned from a vacation in Italy with her husband, and I asked her to tell me all about it. It sounded wonderful, and for a while I was mentally transported out of the chemo chair. Then she brought me back by saying that the trip was on their bucket list, which of course reminded me of death. Oh no, not that again. With her help, as well as that from Dana, Julie and Patience, I made it through this session and the next. I was done.

What now? In a way, not having more treatments was unnerving. It was the only routine in my life, and it was being taken away. It meant no more comforting nurses. It meant being forced to know whether the treatments had worked. As long as I was getting treatments, I could take comfort in knowing that the cancer was being attacked. Now I was to know whether the attack -- past tense -- had worked. Yikes!

Dr. Moreas was encouraged because I held up so well throughout the treatments. Huh? I could barely stand. He explained his point. Typically, the oncologist prescribes the maximum dosage of chemothepathy drugs and reduces that dosage based on how well a patient's body, as measured by all those blood tests, holds up. Many patients are strong enough to receive 50-70 percent of maximum dosages. Me? He gave me 80-90 percent. Well, at least I knew why I felt so crappy. But I understood his point: higher dosages have better success rates.

Dr. Moreas' work was done. Now he hold me to let my body recover. Then, back to Dr. Schenk. Oh, that guy. Dana told me that Dr. Schenk likes to perform surgery on a cancer patient within a few weeks of completing chemotherapy. He doesn't want to give the cancer an opportunity to grow back; thus, the short interval.

I dutifully scheduled an appointment with Dr. Schenk for Friday, July 22. We met and walked through the process from here. He wanted me to get another PET scan to see whether the cancer was retreating or advancing. If it was advancing -- meaning, the treatments didn't work -- then he wouldn't put me through the trauma of a radical surgery. And that meant what, exactly? "You wouldn't be a candidate for surgery," he said. In plain English, I was going to die.

Dr. Schenk told me to take a few weeks for my body to recover enough for the scan. And so, I set the date: Wednesday, August 10. That's when I would get a test that would determine my fate. I was scared.

Wednesday
Apr042012

9. Family Matters

I first met Kate in 1986. We were working at the same public interest group. I was really taken by her warm smile, terrific eyes and a breezy attitude to many things in life. Amid all the seriousness of life and relationships, she was a breath of fresh air. And in the biggest incident of brainwashing ever seen in Washington, D.C., I convinced her to marry me. I figured I had better act quick in case she woke up one day and thought, "What, marry this guy? Are you kidding?" In other words, I had to keep her from listening to her mother.

Fortunately, Kate had a bit of rebelliousness in her. So we walked down the aisle, had three kids, and shared a lot of terrific moments together. Not all our moments were terrific. I couldn't make brainwashing a permanent state, after all. That's when I learned to say three words more often than any others. "I love you"? Nope "I was wrong." Those words diffused many an argument. Together, we built a life through all the years of diaper changing, home life, careers and vacations. From when the kids were young and would greet us with a big hug, to when they were older and barely noticed whether we were there or not. And, ultimately, through the death of both of her parents.

Through it all, Kate has been the strong, unifying force in our family. When Stephen realized that he was gay, he turned to Kate for reassurance. When Michael had moments both good and bad, he turned to Kate. And only Kate could convince Jack -- my buddy Jack -- to do his chores. When I was diagnosed with cancer, it would be no different. All of us turned to Kate.

For me, it was that initial meeting with Dr. Schenk, the one where I realized that I might not live for long. Right at that moment, the thought that popped into my head was, "Whether I have months or years, I am here to love Kate as much as humanly possible." Where this idea came from, I don't know. After all, it's not like I didn't love her before. What I felt, though, was that I had taken for granted that she would always be there, for me and the kids. Now, I wasn't taking that for granted. I couldn't afford to. And knowing that triggered a much deeper love for her.

When we left that meeting, she displayed her strength. "We're going to beat this," she said, with a more powerful determination than I had ever seen. It was Kate who talked to the kids first. It was Kate who organized our house in preparation for a long convalescence. It was Kate who held me at night. It was Kate who held all of us together.

After treatments began, and she still had to work, she texted me all the time. Some to see how I was feeling. Some to remind me which meds to take. Some simply to say, "I love you." She would come home at lunchtime -- she teaches at a middle school that's five minutes from our house -- and give me a big hug. Once she finished her work day, she would sit by my bedside. Just looking at her raised my spirits.

The kids rallied to my side in their own way. Stephen, who works at Starbucks when he's home from college, would bring me all kinds of drinks and light food. Michael would run errands at all hours of the day, picking up things I needed or wanted to help me get through the day. Jack would come into my room and cheer me up. Together, the boys and Kate set up the media room upstairs for me, put a small fridge in my bedroom, and kept it filled so I wouldn't have to leave the room during the night.

My sister-in-law, Kerri, also was a great source of support. She lives 30 miles away in Arlington, and would come out to see me on the weekends. Kerri is a lot like Kate. They tend to put the interests and concerns of others ahead of their own. That can be a good and bad thing. She worried a lot for, and helped, her parents during their illnesses, and now I was next in line. She would cheer me up, sit next to my bed, and help me take my mind off chemo and cancer. In a way, our family is not just Kate and the kids, but Kerri as well. And I care for her deeply.

The scariest event happened when Stephen and Jack contracted strep throat at a time when my immune system was the weakest. It was horribly unfair to them, but we had to resort to quarantines -- Stephen, Jack and me all in separate rooms -- until they were no longer contagious. Stephen, whose bedroom was in our basement, also suffered from the poor airflow of our air conditioning system. In the summer of 2011, half of the country was engulfed in a tremendous heat wave where temperatures hit tripple digits for weeks on end. To keep me comfortable upstairs, Stephen endured temperatures so cold downstairs that he had to wear sweaters and sleep with lots of blankets.

My family, all in their own way, made big sacrifices for me, and came to my aid in amazing ways, I am not only blessed to have Kate in my life, but Stephen, Michael and Jack, too. That feeling -- a feeling of deep, deep love -- strengthened my will to fight and endure. I wanted to be part of their lives -- to help them when they need it -- for many years to come.

Thursday
Mar292012

8. Support

I don't think cancer really changes your priorities. But it sure does intensify your feelings about them. For instance, if your family was important to you pre-cancer, now they're REALLY important to you. Same about how you feel about your spouse, friends, things you enjoy, etc. One exception: work. At this point, I couldn't care less about work other than as a vehicle to have good health insurance, which I did care about. My focus was on survival and enduring these terrible treatments. Period.

And I quickly learned that I couldn't do it by myself. I don't mean needing the nurses and doctors. Of course you need them. No, what I discovered is that I really needed a great support network. Kate. The kids. My extended family. Friends. Neighbors. And others who were either going through what I was gong through, or had done it before. This is where I got lucky.

My brother Dr. Bob, for instance, was a lifeline. He was my first contact when I was experiencing side effects from all the meds and poisons in my system. I trusted him implicitly. The only area where his advice made me nervous was taking CoQ10. It's a supplement designed to spur cellular growth. His intent was to help my body rebound from the beating it was taking. But wasn't cancer growing in cells, and wouldn't CoQ spur growth of these bad cells as well? Hmm. He said yes -- gulp! -- but it would make these cells more sensitive to chemotherapy. More sensitive is medical jargon for being vulnerable to attack. Dr. D., himself an admitted CoQ user, later explained that cancer cells and good cells grow differently, and that CoQ helps good cells. I didn't have a clue whether Bob and Dr. D. were right, but it sure sounded good to me.

Dr. D. was amazing. He gave me his cell phone number, and told me to call him directly for everything. If he could help me with a medical complication over the phone, he would. If I needed to see him, he would change his schedule. And given what was happening to my body -- tingling, fast heart rate, insomnia, the list goes on -- I sure did talk to him a lot. When I saw him for the first time since my treatments began, he gave me a big, big hug. That was a first. Wait, let's see if I got this right: I need to have a life-threatening disease to get a hug from Dr. D.?! Geez, this guy is tough! Others in Dr. D.'s office were huge, too. His nurse, Lynn, was someone who saw me the most. What a sweetie she is. And Tammy, the office manager, helped me with information for other doctors, work and Aetna. And their wishes and prayers for me were touching.

My sister Betty was another important person in my cancer battle. I love all my siblings, but I'm probably closest to Betty. In fact, she was the best man at my wedding. Betty would e-mail me almost daily, and we would talk on the phone for long periods of time. Well, a least she would talk. I would tire during these conversations. But I so appreciated her love and support. She even flew from Denver to Virginia to see me, passing up the opportunity to make a lot of money at a Nordstrom holiday sale. If you know Betty, you know this is the biggest sacrifice she can make for another person.

My sister Joan told me that she was convinced -- utterly convinced -- that I was going to beat cancer. And she said it with such prayer-like calm, I knew she really meant those words. When she drove up to my house from Richmond, we just fell into each others arms. My sister Chris called and visited. I had been upset at Chris for how Michael found out about my cancer. But I told her that I really needed her with me, and she was great. My sister Cathy took a different approach. She purposely gave me space and waited for me to reach out to her. Not because she didn't care; quite the opposite, it was because she cared so much. She understood the difficulties I was having during the day, and how calls or visits could come at bad times. This was great, because whenever I was strong enough to call her, she was there for me. As was her husband and my brother-in-law Steve. I've known Steve ever since I was a kid. He was literally the boy next door for Cathy. Okay, up the street, but close enough.

Facebook helped me connect to my many nieces and nephews. Jeff and Craig were regulars in checking up on me. Valerie, Ally and Kathleen, too. Melissa, who had endured her own bout with cancer in college and would soon marry my nephew, Peter, was a constant source of support. And the Brennans. Oh, so many Brennans! Mara, who would soon marry my nephew, Matt, texted me the most. Her niece, Eleanor, was going through chemotherapy treatments at the same time. Having cancer is bad enough. Having cancer as a little girl is simply awful. In reaching out to me, Mara could better understand what Eleanor was feeling. In turn, Mara's accounts of Eleanor gave me more strength to fight.

My parents were regular visitors at the house, and I talked on the phone to my mom almost daily. At the same time, my parents were concerned about a downturn in the condition of my brother Bud; he had suffered a brain hemorrhage some years back. So my parents had difficulty processing what was happening to their oldest and youngest sons. Many years before, they had lost one of their children to leukemia. They didn't want to lose another.

Whenever my parents came over, they brought food. Tons of food. My sister-in-law, Leala, also sent food to my house every week or so. My favorite: Kate's manager at work, Tonya, who had her own bouts with cancer, constantly dropped off pizzas at the house. Now, these wonderfully smelling cheese and pepperoni pizzas were not intended for me; they were for Jack, who promptly gobbled up each and every one.

When I was strong enough to go outside for a walk, I would run into my neighbors. My friend Jim was especially helpful. He had a terrible cancer a few years ago, and had gone through chemotherapy and radical surgery. Jim helped me understand how to get through the days, and how my life was being changed. Nancy also had gone through rough medical treatment with a brain tumor. Her husband John was an encouraging force for me, as were my next-door neighbors: Julie introduced me to organic drinks; Ashly, a medical intern, told me of the cancer experience of her boyfriend at the time. Kathy would give me the biggest hugs. And our mailman, who is a woman, checked with me every time she drove by.

At work, few knew about my condition. Before I left, I had told no more than a handful. Eric gave me a big bag of DVDs. James bought me music. Mike and Cyndi worried for me. Sharon, whose husband had passed away of kidney cancer, knew what it meant to be in the chemo chair. Jane, who had nearly died from leukemia, knew exactly how hard all this was. Lorig protected my privacy. Still, lots of people figured out that something was wrong, and flooded my email or mailbox with messages of good wishes.

Kate's friends also would stop by. And a number of them had had cancer. As I listened to them talk about the experience, a couple things stuck in my mind. First, they were still alive. That was hardly a given for me, so it was encouraging to see that you can survive. Also, they spoke a language different from other people. A greater appreciation for each day. Wonder at the marvels in life. And a care-free attitude to things that normally would have bugged them. I connected to all of this. It seems there is a club for cancer patients and survivors, and they speak a different language and have different ways to live life. It's a great club to be in. But you don't want to pay the entry fee, that's for sure.

I could go on an on. And I know that I haven't told you about many other wonderful people who helped me. Sometimes, the influx of attention was too much for me to handle. Other times it was just what I needed. But at the end of each day, I felt so blessed to have so many people caring about me, rooting for me, praying for me. Now, you might be thinking, hey he didn't talk about his wife and kids. You're right. That needs a separate post all its own.

Sunday
Mar252012

7. Empty Days, Scary Nights

The second cycle just sucked. I went in thinking I could will myself through it. When I showed up at oncology on Friday, June 3, to start the next treatment, I said, "I'm ready to go. I can do this. F you, cancer." Seems that I forgot to include the chemo drugs in that sentiment. They clearly had another idea in mind. When Dana said that chemotherapy has a cumulative effect on your body, she wasn't kidding.

By this point, my zombie feeling had set in. I discovered that Xanax is highly addictive. My body was weakening. I was losing a pound a day. My mind was deteriorating. I kept plugging away at an academic paper. But I found myself reading and reworking the same section time and time again. And my emotions were out of control. I couldn't talk to many people because I would inevitably choke up with emotion. Kate would listen to me say many times a day how much I loved her, and wonder where the old Jim went. Not that I didn't appreciate her before, but now the mere sight of her now made me cry. I was fighting the chemo drugs, and they were winning.

Then I discovered something new: paranoia and panic attacks. With Kate and the kids still in school -- Stephen was home from college, but spent his days working at Starbucks -- I was alone in the house most of the time. Every night, I panicked about how I would get through the next day. When you think about it, people typically spend their days going back and forth to work, running errands, visiting friends, and the like. I could do none of that.

My days were a vast wasteland of emptiness. And it scared the hell out of me. What could I do to get through the day? Everyday, I had absolutely no idea. I tried watching television, but I couldn't handle any violence. ESPN analysts take themselves way too seiously. I had no tolerance for the shouting voices that represent television news. And from television to Twitter, I suddenly noticed daily accounts of sports figures, business leaders and celebrities dying from cancer. One in particular was Nick Charles, a sportscaster, who died from bladder cancer after not having the strength to go through more chemotherapy. That shook me to my bones.

My respite: the Home and Garden network. No kidding. If I survived the cancer, at least I would become a good home decorator. I watched video podcasts of Leo LePorte's TWIT network. Entertaining discussion of technology trends, coupled with practical knowledge on how to use my Apple devices. I watched a ton of baseball games. Mostly Washington Nationals and Baltimore Orioles. Pure escapism. Since I couldn't attend games, I followed my team by reading the daily blog of Mark Zuckerman, who covers the Nationals and has become a friend of mine. Somehow, I would make it through the day. And knowing that gave me some comfort heading into the next, empty day.

Nights could be worse, though. I had extreme insomnia. I struggled mightily to sleep. Most nights, I would get only an hour or two of sleep, and that was about it. My body was still tingling. My heart pounded away. My ears were constantly ringing. It seemed that my system just couldn't stop going full speed. What did I think about in the quiet darkness? Schenk's words. "Ugly tumor." "You know what we're talking about." And other Schenkisms. My heart woud beat harder and harder. And I woud sweat in fear. A lonely fear.

Kate tried to help by teaching me how to program my mind into a sleep state. Remember all the good things about the day, and feel good about them. Place people and events into rooms of a house, and close the door on each one, she said. I coupled this approach with watching the same movie every night, Eight Men Out. It's a John Sayles movie about how the Chicago White Sox threw the 1919 World Series for gambling money. After a time, I memorized the dialogue and it created a comfort zone for me. It drove Kate up a wall, though. Together, these tactics helped me get a couple more hours of sleep each night. What I didn't plan for: just as I was finally falling asleep at 4 in the morning, Stephen would be up getting ready for work, and the sound of his shoes hitting the hardwood floor downstairs woke me up. Geez, I can't catch a break.

Then it was back to oncology on Friday, June 10, yet another long treatment. Perhaps for the first time, I started to feel sorry for myself. How would I know if the chemo meds were working? What if they weren't? And why me? I tried to express how I felt to Dana, and I just broke down. She comforted me with a big hug. But I thought to myself, when will this end?