Monday, July 22, 2013

An Environment of Hope

Friday, July12, 2013

Friday morning dawned feeling very surreal. I was home but my world had shifted off its axis. Everything here looked the same. The raised bed garden needed tending (after more than a week it still does), the deck hadn’t magically finished itself, and there was a big stack of mail to sort on Danelle’s desk. While for us it seemed that time had frozen during the past week, for the rest of the world it was business as usual.

The good news was that I was home in my own bed (thank you Original Mattress Factory, the best money I’ve ever spent), with normal smells and sounds. The bad news, I was experiencing new symptoms like night sweats (which are just gross). I awoke before the 5 am alarm and Danelle and I got ready to go. After eating a quick breakfast and having coffee from fresh ground beans we rolled out the door by 6 am.

The previous day when speaking with the physicians liaison she had told us to pack bags in case Duke wanted to keep us over night. Just packing the bag with the potential of not coming back to my “place” that night made me nauseous. If I have learned anything it is that it is easier to face anything as long as you can make it home at the end of the day. I warned Danelle that if they wanted to keep me it might just be the straw that broke the camel’s back and I might very well lose it.

Arches viewed from third floor.
We drove what I am sure is going to become a very familiar path, Highway 64 West to 540 West, to Durham. Danelle navigated the growing amount of traffic, which was still light due to the earliness of the hour. We pulled up in front of the Duke Cancer Center about 7:30 am. We were excited to see valet parking because finding parking at Duke is akin to winning the lottery plus I was still a little unstable on my feet and the long walk from the garage to the center may have been taxing.

We walked into the mammoth lobby and were immediately greeted by an older man who notices our bewilderment. He asked where we were going and we showed him our destination. He then guided us to the elevator, led us up to the third floor, pointed out the restrooms, and showed us where we would check in at 8 am. It was the first time I have ever experienced such hospitality from a hospital. It was more like entering a fine hotel than a medical facility.

The waiting area itself surrounds a multi-floor entryway that has beautiful art in lovely tones,
architectural features like wood framed finishing that is reminiscent of the windows of Duke Chapel, and on the ground floor an amazing piece of tile art that is filled with quotes of hope. If there has ever been a building designed to inspire hope, it is the Duke Cancer Center.

We eventually signed in and were handed a clipboard with a form on it to complete about pain level and basic personal information as well as what resembled a restaurant pager. We sat at a small, wooden café table and completed the form while making small talk about how lovely the building was.

After spending days during the first part of the week in clean but very clinical surroundings, I
Quote Floor at Duke Cancer Center
can’t tell you how much I appreciated being somewhere that felt hopeful. Oh, I can’t imagine the conversations that must have arisen over the extravagance of the architecture, but I thank God that in this case the artists had a voice over the pragmatists. There is something about entering the building that lets you know, “this is where the best of the best come and give people a big dose of hope to go with their chemo, radiation, and medicine.”

A few minutes before our appointed time our buzzer went off and we were escorted back into the “inner sanctum.” I was measured, weighed, and had my vitals checked (a pattern I’m becoming accustomed to) and we were assigned an examination room. What a great room, in the center of the room is what appears to be a throne, with a soft seat and armrests and a high, padded back. You eventually realize it is also the exam table that rises from the floor and can lay back to make the patient supine for an examination. The room is more spacious than a typical exam room with extra seating available for family and an efficient workstation. The first bubbly, young woman enters and begins gathering essential information, asking if we need something to drink or eat while we wait. She comes across more of a hostess than the medical professional she is. Then our nurse comes in, a sturdy woman with a European accent and takes medical history.

“This is all the medicine you take?”

“Yes.”

“No symptoms before Sunday?”

“No.”

“Well you are an overachiever, Dr. Cauley. I can’t think of anyone I have ever seen who was diagnosed on Wednesday and here on Friday.” I think that was her attempt at humor. She was professional, efficient, and obviously experienced. When she came across the pain meds that the hospital had given me she clicked her tongue in disapproval that they would give something with Tylenol to somebody who had liver issues. “We will have to take care of that.”

Next came Dr. Harder. We later found out that he was a Navy physician who was training with our oncologist in gastrointestinal oncology as his specialty. He was an amazing listener. Danelle and I took turns relating the story of our vacation. A couple of days in Berkeley Springs, a roller coaster ride, the family party, the discomfort that turned into pain that turned into an attack requiring an Emergency Room visit. Once we asked if our telling it together was problematic, he said no, it actually gives a more complete picture of the situation. I laid out my pain med enhanced version of the hospital stay and Danelle filled in the gaps that I had missed. Then, the questions:

“Night sweats?”

“Well not really until last night.”

“Reflux?”

“Yes but I’ve been taking Priolosec for years.”

“Flushing? Hot flashes?”

“Nope.”

He did ask some more personal questions, but I’ll just skip over those since none of them applied. LOL

“So no real symptoms until Sunday morning?” Get the feeling there is a trend in these questions? Sometimes it felt like a very polite police interrogation and that they were looking for any inconsistency between stories or to see if any new revelations arose. He listened to my lungs (figured out later they were trying to see if I had decreased lung function), pushed on my abdomen (still a little tender), and felt my glands. Everything seemed normal, except for that whole cancer on my liver thing I mean. Before he left he indicated that he and the senior oncologist were going to review the film, biopsy report, blood work, etc. from St. Vincent and they would be back in a few minutes.

He stepped out of the room and Danelle and I just sat there, still in that surreal state where you know what’s happening but you keep thinking, “This can’t be happening.” The funny thing about being sick, especially with a time-sensitive illness like cancer, you spend a lot of time waiting. I generally don’t wait well but I’m learning to be comfortable just waiting.

Dr. Uronis blew into the room like a whirlwind. A thin, small framed woman who exudes confidence (and who would rather be called Hope than Dr. Uronis) has the appearance of a marathon runner. “How are you feeling?” At that question Danelle and I burst out laughing, “Oh I know!” Dr. Uronis said, “It just comes out.” Danelle and I had been experimenting with creative ways to answer that question. This time I answered, “like used gum on the bottom of an elephants foot walking thru a dung pile.” I thought that was pretty accurate at the moment.

Back through the history to verify what we have verified: no symptoms, pain level, started Sunday, diagnosed on Wednesday, etc. She listened to my chest, poked on my abdomen, felt my glands (medical de je vu).

“Well, its not pancreatic cancer in the traditional sense…what you have is neuroendocrine carcinoid. This is set of slow growing lesions that have metastasized to your liver and perhaps other places. We will need an octreotide scan and another CT scan at least to determine more about the state of the metastases.” And then medical terminology, Danelle is writing furiously while I sit on the exam throne and listen as if through a fog.

We then ask the big question, how long? Will I be able to go to the Masquerade Ball in October, “Oh, that shouldn’t be a problem.” She then went into the frustratingly vague medical language, “We can’t really know until we have more time points how fast its growing,” “It’s of indeterminate origin.” Then she said, “You should have many, many months.”

When you are thinking you have six weeks to three months to live, “many months” seems like an eternity. Those words came as a relief that I wasn’t going to abandon those I love so quickly. Danelle said it was like a band of pressure lifted off her head hearing those words, “many months.” Don’t get me wrong, if I walked up to you in the street and said you had “many months” to live, you’d probably panic (or think I was insane). Funny all I could think about was the music video, Savin’ Me by Nickelback where there are clocks over everyone’s head counting down the years, months, days, hours, minutes, and seconds they have left to live. At that moment I really wanted to see my “life clock” so I could make the most of the time I have left.

We left the exam room and headed down to schedule additional scans and to get more labs. I believe I had more blood drawn in this one week than all of my life up to that point. Funny thing, all my blood work came back within acceptable levels. No red flags. Actually, my labs were all better than they had been a couple of years ago. These would be the same, all coming back within normal range for a healthy, adult male of 48. Essentially, I’m healthy as a horse, except for the whole cancer thing.

The beauty of modern medicine is that now when the doctor orders a test, they can give you access through an online patient portal to see the results. You can become an “expert” on your own information. We can look up and see the lab values and then compare them with what is considered “normal.”

We left the Duke Cancer Center with a great sense of relief and a lot more questions. The octreotide scan and CT scan were scheduled for July 23 & 24. We see Dr. Uronis again on Monday, July 29th to get the results. More waiting. More wondering. More making wish lists of what we want to do together during our “many months.”

We were told to “return to normal,” whatever that means, as much as possible. That returning to our regular life was the best thing we could do. Yes, I can go back to the gym, but take it easy for a few weeks. Yes, I was cleared go back to work on light duty for a couple of weeks, then to do as much as I could tolerate. I was given better pain meds, told to abandon Tylenol and use ibuprofen three times a day on a regular basis to control ongoing discomfort, and sent back to my “normal life.” All of this before lunchtime.

With our new lease on life we picked up the car and I got behind the wheel for the first time since Sunday morning. We headed to Macaroni Grill to celebrate having “many months” instead of just a few weeks. Not long after we had navigated off the Duke campus I looked over and Danelle was asleep, I mean really asleep. I have a picture but I'm forbidden to share it. With the band of concern lifted from her head and the immediate need to “be strong” gone, the week’s exhaustion settled in and took over for the thirty-minute ride from Durham to Raleigh. It was the first time she looked relaxed in days.

After lunch we made our way home. We gave Lydia the update and headed for a nap, a nap that would last for three hours. All of the week’s weariness had sapped our bodies, minds, and souls of all reserves. We lay down on the bed and within minutes were fast asleep. Everything looks better after a nap.

Time is precious. We talk about living every day to the fullest, but usually live most days like we have an endless supply. Mortality is an interesting thing. We all give intellectual acquiescence to the idea of our mortality but live as though we are really immortal. I understand why, if we spent all of our time considering our mortality we’d succumb to being narcissistic, navel gazers and never get anything done. On the other hand, if we aren’t careful we allow the urgent to overwhelm the important when we assume that we can always make up for today by borrowing on our tomorrows. We leverage the future by sacrificing the joy of the present.

So what am I doing with my new knowledge that I have “many months” to live? I’m making lists and setting goals. I’m setting twelve-month goals, what do I want to make sure I do during the next year? I’m setting eighteen-month goals, twenty-four month goals, thirty, and thirty-six month goals. These are simple things like I want to see my second grandchild who is due January 1, 2014; I want to go to Disney World and suspend reality for several days; I want to turn 49 (and 50, and 51…lol); I want to see my daughter graduate from Duke Divinity School, and my stepson graduate from high school. I want to do more baptisms, marry a few more couples who are really in love, even do more funerals because I really understand how precious life is. I want to live every minute as if it were my last. I want to sit on the beach and watch the sun come up; I want to drink really good wine; I want to eat really good food; I want to laugh with friends until we cry, and cry with friends until we laugh. I want to live my many, many months so that when I die I can slide into heaven and say, “Whew, what a rush. Hey, God, what’s next?” At the risk of sounding like a country song, I’m going live like I’m dying, because I am, and just so we are clear, you are too. And, I’m going to live with hope.

Gracious God, I am truly thankful for every moment I spend with those I love, for every tear I shed when another's heart breaks, and for every time I laugh deeply with the joy of being alive. Help me to live every moment for You, with You, and as You would lead me. AMEN

PS. Both my oncologist and my presiding bishop are named Hope, I’m surrounded by Hope!

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