12. The Waiting

Tom Petty isn't kidding. The waiting really is the hardest part. After meeting with Dr. Schenk on July 22, I had to wait until August 10 to get a PET scan. Why so long? As long as I was still feeling the side effects of chemotherapy, my body could not lay still long enough for the protracted scan. I couldn't take my mind off what the scan might find. But I was able to do new things. Kate took me out on a greater variety of outings. And I began to appreciate life even more.

For instance, while Kate logged case files in a work computer, I waited in a school's administration office. There, a father and son new to the area were trying to find out which school they could attend in the fall. The son's case was more complicated than usual because he needed access to a specific academic program not offered in all schools. I watched one of the administrators work the phones and call several people before coming up with the correct answer. We don't often think about the staff in schools. But they can be just as important, and dedicated, as those that teach students. When Kate showed up, I walked away with a smile on my face. What a good memory for my nighttime ritual of trying to get to sleep.

We also went shopping at the local furniture store and a wine store, both family-owned businesses in the heart of Ashburn. Both stores had owners willing to talk with you about all matters and help you buy the right items. We ended up buying two small tables and a couple bottles of wine. Before my diagnosis, I hardly noticed these stores, much less their owners. But now, as a cancer patient at home during the day, I was able to experience how more people live and work outside a traditional office environment. And it enlightened my mind and lightened my mood. Another great memory to store.

Slowly, my appetite began to return. So Kate and I, sometimes with Jack, would go out to lunch at local restaurants. I loved these events because I got to spend one-on-one time with Kate in a non-medical situation. Again, I got to observe the life of others at home during the day. Retired people. Moms meeting up with each other. Kids home for the summer. Workers in the neighborhood taking a break. God, what a great environment. Later, Kate and I went to The Birchmere club in Arlington to see one of our favorite bands, Fountains of Wayne. I was amazed that I had enough strength to stay out so long. And I got home with a horse voice from all the singing we did that night.

After several days of all this -- concert, eating out, school visit, wine and furniture shopping -- I felt like I was on an extended vacation. It had that same great, liberating feel. Then it dawned on me: I was beginning to heal emotionally. I was seeing the beauty of everyday life. Beauty that had been obscured by side effects while I was undergoing treatments. Beauty I was never aware of pre-diagnosis. Which of course made me cry.

I even carried my upbeat mood to oncology, where I had perhaps my first amusing experience. Now, amusing and oncology are words that rarely go together. But in this case, they did. When I returned for a port flush, the nurses noticed that my hair was, well, barely noticeable. And they felt sad for me. "It's okay, it happens to everyone." Except that's not what happened. In fact, my hair continued to grow during treatments, So much so that I asked Kate to cut my hair; I didn't want to risk getting cut by a barber. But she cut my hair so short that any remainder was difficult to see. Argh. Just when I was trying to move past treatments, I now had chemo hair to deal with!

In addition to hair, I parted with other things as well. For instance, I wore buttoned shirts to chemotherapy treatments. Those shirts made it easier than golf or t-shits for the nurses to access my Mediport. But now, I put those shirts in the back of my closet, not to be worn again anytime soon. My white iPhone reminded me too much of oncology, So I switched with Kate and got her black iPhone. These things sound kinda silly. But at the time, I was looking for any way to put bad memories behind me.

All this led to my big date: the PET scan. This time, I didn't think twice about walking out to a trailer for the latest in modern medicine. I knew the routine. My body still tingled, but I managed to stay still enough long enough for the diagnosticians to get a reading. What it was, I would have to wait. Sigh. This was Wednesday, and I would have to wait until the following Tuesday, August 16, when I would meet with Drs. Moreas and Schenk. Kate tried to distract me by taking me to an Orioles baseball game, the first one we had attended since treatments began. But my mind inevitably drifted to what the scan might show. What if the treatments didn't work? Would Moreas add more cycles for me to go through? Would the drugs be changed and I begin a whole new set of treatments? Would I even have any options?

Thursday. Friday. Saturday. Sunday. Monday. The longest five days of my life. My first break happened Monday night when I talked with my brother Bob, who I had included on the list of doctors to be given my test results. He had the results. He admitted that some of the technical jargon eluded him. So he was cautious about what he was about to tell me. There were two words on the report that he believed offered me hope: "complete response." Sounds encouraging. But what does that mean, Bob? He wasn't sure. But Moreas was. "Complete response" means that the scan found no cancer in my lymph nodes -- the area that initially indicated possible spread -- nor anywhere else. You're kidding, right? I said. No, it was not good news, he said, it was great news. In fact, he had seen only one other case like mine.

Okay, I began to feel a whole lot better. But I was still holding back. Why? I needed Schenk, who was straight and blunt with me all along, to tell me. "You've heard about your results?" he opened with. Yes, I had. But I said no. I needed to hear it from his mouth. What did they show? I asked. "Complete response." And that meant what? "It worked." Those were the best words I had heard from Schenk. My body just collapsed in joy and relief. It meant I wasn't going to die, at least not anytime soon. Schenk has told me so, and there was no greater authority. All those treatments, all that agony finally paid off. Thank you, Lord. Tears flowed.

After catching my breath, and hugging Kate, I asked, "What's next?" He said: "It means that you're a candidate for surgery." This is where I pushed back. Let me see if I got this right: chemotherapy killed my cancer cells, and you still want to remove my bladder? Yes, he said, "you remember what we talked about." Yeah, I did. Bladder cancer has a high rate of recurrence. Even scans are not definitive in identifying all possible cancer cells. Blah, blah, blah. Of course, I knew all this by heart by now. And I knew I would have to do the surgery. But mentally, I just wasn't in that space. I had just been given the greatest reprieve of my life, and I needed to enjoy the moment. What's more, my body was gradually building strength, chemotherapy side effects were gradually abating, and I wanted to keep this going instead of putting my body through another kind of hell.

Still, I left the meeting with Schenk agreeing to a surgical date, September 19. In the weeks ahead, though, I would ask myself one question over and over: Should I really go through with the surgery?

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Reader Comments (2)

This is really helping me to understand what my Mom is going through, and what she likely has yet to go through. Today is the PET scan and liver biopsy, which I now better understand. You have a great gift for putting into words what is tough to verbalize. Thank you for continuing to share your story.

April 25, 2012 | Unregistered CommenterNicole Brown

Wishing your Mom all the best

April 26, 2012 | Registered CommenterJim Kurtzke

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