Cate, Blue and White

When Cate was first born I was a young 32 year-old. I had been working as a strategy consultant and traveling Sunday night through Thursday night every week. I got that consulting job coming out of EDS where I was a financial analyst. The consulting gig paid me almost three times my EDS salary, and I lived the fast paced life of a traveling hired gun. I stayed and ate at nice places. I talked almost exclusively to highly-placed executives. I worked above the fray. I liked the job and was good at it.

Leading up to Cate’s birth I had taken about four weeks off from traveling so I would not miss the moment of her arrival. I had been working in Up State New York for a small telecom company doing strategy implementation and process optimization. It was long hours with high expectations, so coming home to down-time was both rewarding and maddening as Deb and I waited for Cate. When she arrived, we were shell shocked. We had been reading about parenting quite a lot, but we were completely unprepared.

I can recall one time in particular when Mac and Gayle were visiting us. It was early evening, Cate’s bedtime, Cate had eaten and was in her bedroom in her crib but she was decidedly not ready for sleep. Deb and I sat staring at the wall as Cate cried. We followed the recipe from our research: wait five minutes, check diaper, pat reassuringly, do not pick up baby, coo, leave, repeat after ten minutes. The minutes passed even more slowly as Cate continued to cry and Mac and Gayle continued to watch us, apparently as determined to let us parent as we were to do it. After about 30 minutes of this, finally Mac stood up, “If one of you all isn’t going to get that baby then I am.” It was a beautiful way to break the tension, and we gave in immediately. In general, we abandoned the notion of “crying it out” that night. We still understood the importance of letting Cate get secure in her crib without us there, but it was with more visits, more coo’ing, more patting, more rubbing, and more staring at her and singing to her. We were there, and she was safe.

But back to my consulting gig. After Cate arrived with her black hair and squishy little body, I went back on the road to close down my New York gig. I was to be on the road for two weeks, including the weekend. I did the tour. We closed the gig with some degree of success and I returned home almost fourteen days after leaving.

I can still see how Cate’s eyes had changed color while I was gone. They had left their deep, oceanic blue behind and were lightening to their current hue. Her face had thinned, her fingers moved in concert and with focus. She was a different baby than the one I left. She had changed.

And I had missed it.

At that moment life presented a choice to me. I could keep consulting from Dallas and traveling, or I could find a job that paid less where I would not have to travel. Believe it or not I had to think about it. It wasn’t a trade-off of money versus my daughter. It was the security of a paying gig with benefits that I knew how to do, versus the uncertainty and ambiguity of finding something new.

The second of these options was terrifying to me since I would undoubtedly take a major pay cut, I might have to relocate, and I would certainly leave behind the career I had built with a top tier consulting company based in Boston and staffed with Ivy Leaguers. There was a lot of fear. But nothing was more terrifying than missing my daughter’s life. And I didn’t even really know the depth of my love for her yet.

It wasn’t until another two weeks or so, after I had given notice and begun my job search, that I realized how special Cate was. Debra had agreed to go out with some friends leaving me alone for the first time with Cate. She left me there with Cate, three bottles of breast milk and my parenting research. I was not afraid. But I was a little nervous.

Deb left “for dinner” at about four o’clock. She had pre-pumped a bunch of milk so she could have a few drinks with friends. I should have realized it was going to be a long night. Cate and I played for a few hours and then it was time to eat. I entertained her as I heated the milk up and got her ready to eat. A few minutes later we had a bottle down the hatch and I had her on a shoulder patting out a nice, manly burp. And then before she knew what had happened I put her down in her crib with its hand-painted stars and moon finials. What could be better? The night was going perfectly as planned.

As anyone with kids knows, “perfect” and “plan” generally do not go hand-in-hand with a six-week old.

As I settled in my chair for some email, Cate awoke. She was needing something and unsure of what it was or how to ask for it, she began to cry. I entered the room, patted and coo’d and left. The need was still unmet and so Cate continued to cry. I waited five minutes. I entered the room again, coo’d and patted and checked diapers… but this time when I left I had her with me. I held her horizontally in my arms. She looked up at me with those light blue eyes from under a little knit cap with pink stripes. I had her wrapped up papoose style, so between the tightly wrapped blanket and my arms, she was definitely secure and feeling safe.

I held her and swayed in synch with The Jayhawks' "Blue" playing over the sound system in our first little house. It was a two-speaker room with a white-brick fireplace and white couch. The Jayhawks filled the space with their beautiful song, and as I looked down and Cate looked up, I realized I loved her in a way I hadn’t experienced loving something before. I was responsible for her. Simply by me doing my job and loving her, she would grow into something I loved more and more deeply. She would be like me, but better. She would be like Debra, but better. She would be our work of art that lived.

Cate is smart. She is beautiful. She loves music and art. She has an innate sense of business and marketing. She is dedicated and impressive. She is talented and creative. If I didn’t know her, I would want to. I am so glad I decided to not miss her.

Christmas Trees

We visited with the most interesting of doctors yesterday. His name is Dr. David Victor, III and he is on the Methodist Hospital liver board. He must be between 38 and 44, although he had that odd complexion that made it impossible to know. He could have been 30 or he could have been 50. He wore low cut wingtips with blue laces and sole highlights. His pants were skinny pants like a top-flight golfer’s. His tie was the knit kind from the late 80s, although I think his was more Beiber than Back Street. And his general approach was to tell us the glass-half-empty angle on everything. That said, everything about him was gentle and kind. The only thing that was distracting was his “half-empty” spin doctoring.

He talked to us for forty-five minutes. We know more about liver boards and statistics than we ever wanted to know. The liver board’s one guiding principle is that they will not provide a candidate with a liver if they believe that candidate has a better chance of survival without a replacement. That is to say they may live longer with the normal cancer treatment than if they got a liver. According to Dr. Victor, getting a liver transplant is the most difficult operation the human body can undergo. It’s challenging, and I must say, it’s frightening. And the board wants its candidates to know. That was Dr. Victor’s half-empty angle.

The bright spot is that the Houston liver board is the most aggressive board in the country about giving its patients livers. This means they will give livers to patients that other hospitals would not. This is where I fit at this time. And that is the second part of the story. The second part is not surprising at all. It’s exactly what Dr. Javle said would happen: the liver board wants me to undergo six more months of chemotherapy and then reapply.

The new chemotherapy will be administered via IV here in Austin. I don’t like getting stuck with needles, but by taking this option I only get chemo once every two weeks versus taking pills twice a day that make me feel bad and require hour-long walks to avoid chemo sores. I anticipate I will feel bad after the injection, but better shortly thereafter. This is my hope, and it is what Dr. Javle has lead me to believe.

The road we travel reveals itself slowly, but true to the form its experts predicted. I will walk the road with a smile and determined steps. It will not be easy for anyone that I love and I appreciate your thoughts and support for all of us. I am facing the journey with optimism and an ever deeper patience and appreciation for my family. They are struggling through this with me because of how this disease affects me. Thank you for supporting them. They need you.

Speaking of your support, yesterday when Debra and I pulled up from a long trip our home was decorated with not one but two Christmas trees, bedazzled with ornaments. There were also logs in the fireplace, wreaths on the door which was flanked with two poinsettias, candles, orchids, santas, hot chocolate, cookies, soups, peppermint chocolates, roses and a tangible remainder of love. It was an emotional day and this welcome home was deeply and personally felt. Thank you to everyone who had a hand in this, and thank you to everyone who has thought of us these past few days. My family is happier this Holiday Season because of your selflessness.

Cancer's update

I had the CT scan on Monday. No one weighed me. I went back to the foreign halls of IVs, nurses and scrubs where they poked me with a needle, taped me up and gave me a big-gulp size apple juice with barium contrast inside it. In case you’re wondering, it’s not a tasty après ski drink. I nursed it for the requisite hour and a half. Then they called me back again. I changed into blues and got flat on a hard table. They tested the IV with a speed-racer injection of saline. All systems go. The giant white donut whirled to life and the next bits of information began to cascade into the computers. It was cataloging the progression or regression of my cancer.

Deb and I ate steak and had a nice glass of wine that night to run-off the memories of the testing and the fears of finding out the results with Dr. Javle.

The next morning, Tuesday, Deb and I found ourselves again in the waiting room for Dr. Javle. We sat for an hour, two hours, waiting for him to show. Someone weighed me. I broke the 150 mark and my weight has fallen to 147. This is the lowest I have gone in a long, long time, and is really worrisome for me. I will have to start eating more and more and more. Looks like it’s time for some Ben and Jerry’s!

Dr. Javle showed up in a good mood. My treatments have shrunk my tumors in all cases. I look good for a cancer guy. The past 10-12 weeks of constrained life have indeed accomplished something positive. He was so late because he had already called the liver transplant board at Methodist Hospital to see if they could interview me this week. We’re waiting to see if that happens. We were with Dr. Javle for thirty minutes asking questions about liver transplants and next steps. In short, liver transplants are hard to get, but we are at least on the next stage of the journey.

He also told me I can start working out again. This is, as you know, bitter sweet since I have loved lying around watching Sports Center while others stay fit. Of course that is not true. I will be out there doing something physical now – it’s about time.

Finally, we go to get the stent replaced this morning. I am fasting in preparation; losing more weight. We hope to get the stent in so that we can go into the Holidays with a brand new piece of plastic stuck in my liver. We find out today.

Because it is so present in my thoughts, I have to say that while we have been here one of our close friends who has been so thoughtful to me during my bout with cancer is struggling in his own fight. He is here with his wife and some of their friends and family. They live close to us. They have kids at our school. He loves to fly-fish. They have brought us Howdy Donuts on Saturdays. They are friends. 

Deb and I have been with them several times here and it is devastating. The fiction of the situation has become so real. It sits in a strange “other” zone that comes and goes with distraction; when you engage in a conversation, when you read, when you walk through a crowd, the hospital room with your loved one lying in bed fades. But when you snap back to reality, all the undeniable presence, sadness, and inevitability are still there, demanding engagement.

We are heartbroken to see our friends in this place. Life brings a shocking reality upon which all of us teeter. It helps to remember that loss is not so far away. Hugging a kid, helping with dinner, making the bed, doing a date night, building a fire, wetting a line, taking a hike, having lunch with a friend—these are all extravagant luxuries to be appreciated.

Back to Houston

Tomorrow Deb and I drive to Houston. We are going there so I can have a CT scan done again at 1:00 pm. This is the test that feels like warmth cascading down your torso while you lie in the big pulsing white donut. It’s not too unpleasant, but it wouldn’t be a popular ride at an amusement park. Tuesday, we meet Dr. Javle who will have looked at the CT results and will tell us how the cancer reacted to the treatments we have undergone. As I said earlier, if the treatments made me feel as bad as I have over the past few months, then the cancer is definitely in trouble. Then Wednesday the famous Dr. Lee will try to replace the stent once more.

Deb and I are confident in our security with one another no matter what we find out on Tuesday. But the fear of the unknown is difficult to manage. It keeps your mind busy while you’re trying to fall off to sleep. I am confident that no matter the outcome my family will be secure; no matter the findings I will be here for a long while. But the pending verdict certainly has my mind churning.

A very close friend of mine told me about his daughter who went to a park to let a helium balloon go to help her visualize my cancer floating away into refracted light. I have used this very same trick in my past to let go of things. That included my wife at one point; before she was my wife and I had to let her go to hopefully one day have her back --- just like the poster. Thankfully for me, that story turned out well and she is my life partner. I can tell you that she has been with me heart and soul through this, and is a diamond-plated treasure. I have told my kids about how special she is, and how lucky I am, we are, to have her.

Another time I let go of a balloon was with this damn cancer. As I watched that spec disappear once, twice and then forever become an indiscernible part of the vast blueness, it helped me remember that I am not alone. It’s not in my control and I can’t beat it alone. And I haven’t had to. Any one who reads this note is on my team. And there are many more who don’t even know I keep this blog but who pray for me and my family and think about us daily.  Thank you all. I think without that balloon visualization and all the people supporting me and my family, the anger and resentment would overcome me. There is no love in that.

Debra and I noticed today that we are very close since my diagnosis. It’s not unusual in these cases to have more patience for one another. But it’s a benefit and we appreciate it. Another benefit is the number of friends we have grown to appreciate more deeply. Still more include my deeper relationships with my kids, my extended family, and even my dog.

Life is hard – no impossible – to justify. It brings death and it brings beauty. It brings brittle cold and glowing warmth. It brings morning dew and hurricane. It is yin and yang. No matter the information on Tuesday, our lives have been made richer from this experience. Thank you.  More Tuesday(ish).