|From left to right: Sharon, me, Callie, Nicki, Jan|
Day 27 of hospice care. Still no symptoms.
It’s been a long weekend of goodbyes, extending into Monday. I went into it with the intention of saying my goodbyes to some special people, but I didn’t end up saying the G word all that much. The past three days were really about the L word.
I met with my nutritionist Katie today. I’ve talked about her before, especially in two posts; My Manna From Heaven and The Road To Zero. For those who remember her real name, she asked me to use this alias for my blog and book. I am happy to protect her privacy. Not everyone is a showoff like me.
Katie saved me from unintentional weight loss twice during my journey. What I learned from her was priceless. I learned how to eat to keep weight on. This is why both of those chapters will be in my book, Bearing Witness. I know I’m not the only skinny guy with cancer who battles that problem. If you are and you do, read those posts.
When I said goodbye to my oncology team a few weeks ago, I found out Katie had left. So I’d missed my chance to say goodbye to one of the most valuable members of my team. Well, I couldn’t allow that to happen. I had to track her down. I found out she was now working at University Hospital, the same one where I had my consultation for clinical trials. In fact, Katie now works for the oncologist who interviewed me. University Hospital is a huge complex with several campuses, so it was pure luck that I called the right place and found her fairly easily. Or maybe it wasn’t luck.
I left Katie a message last week, and she was kind enough to call me back. She remembered me, and though I’m no longer her patient, being in hospice care, she agreed to meet with me so I could say my goodbyes.
I'll admit I got a little emotional when we met today. I owe this young woman a lot. I asked her if she gets that kind of thing much, patients tracking her down to thank her and say their goodbyes. Not very often, she said. Many patients have difficult memories of their time in treatment, and don't want to go back there. But I've made plain how much I love my team. I still get to see the rest of my oncology team when I go in for consultations once a month, but Katie won't be there. That's why I had to find her.
I gave her printouts of the chapters in my book about my consultations with her. That's when I learned she didn't want me to use her real name. I told her that she had the misfortune of having a patient who is a born performer, and can't do anything without an audience. Including die. My natural tendency, as you know, is to blow up everyone I love on social media. But not everyone wants that. So before my book comes out, I'm methodically asking people's permission to use their name in it. If I've talked about you in this blog, you may get that question.
I also gave Katie a cross pendant. I figured she needs one, since she helps cancer patients every day. Katie and I didn't have a real friendship. We only met a few times. But I couldn't just let her slip out of my life unnoticed. I had to say my goodbyes and thank her for all she's done for me. It's who I am now.
Last weekend, however, was about doing this with real friends. As real as real gets.
Last Friday, Sharon and I flew to the Dallas/Fort Worth, Texas area to visit our close friends Jan Koch, Tony Koch, and Nicki Morgan and their families. Tony and Nicki are Jan’s son and daughter. Sharon and I watched them grow up when we were in our 30’s and 40’s. Our families have been close friends since the 1980’s. Now, Tony and Nicki have families of their own. I wrote about this family in Introducing The Kochs. Their father Galen passed away almost seven years ago. I’m ashamed to say that this was our first visit there since his funeral.
My first reason for wanting to visit them at this time was to say my goodbyes to these three people. I thought it would be my last chance to do so face to face. But in most cases, it was impossible to say goodbye. We know we will see each other again, either here or there. But I’m hopeful that I’ll see at least one of them here again. On this side of the curtain.
Jan is the kind of friend that’s like family, and we always pick right up where we left off when we see each other, no matter how long it’s been. Jan and Sharon have been friends for decades, and Jan made Sharon a promise this weekend that meant the world to me. They will have something in common soon that none of their other friends will understand. The fact that Sharon will have Jan in the coming years is an immense source of comfort to me.
My time with Tony was very heartfelt. He reminds me so much of his dad, it's spooky. Right down to his laugh. When Tony laughs, I hear Galen. But I also see Galen in Tony's calm, thoughtful manner. Many of our conversations reminded me at once of serious conversations Tony and I had when he was growing up, and philosophical conversations I had with his dad. Tony is a great man that I feel blessed to call family. We said our goodbyes on Saturday night at Tony's house. It was a very meaningful time.
Nicki, her husband Josh and their three kids live with Jan right now while their new house is being built. So we got to spend much more time with them than we would have otherwise, which was perfect for me. I know Nicki’s very frustrated with the amount of time it’s taking for their house to be ready, but I was glad, because it meant she was with us.
I gave Nicki this montage, printed and framed. It's shows how our relationship has pretty much stayed the same since she was very young.
Nicki and I have had a special relationship and a powerful bond since she was an infant. She’s in her early thirties now, and not having had children of my own, she’s the only person in my life that I’ve had that kind of bond with at every stage of her life, from infancy to adulthood. She’s the closest thing I have to a daughter.
When the time came for me to say goodbye to both Jan and Nicki, I couldn’t do it. All I could do was tell them how much they mean to me. All I could do was make sure nothing was left unsaid. That’s what I mean by saying my goodbyes. I might not actually say goodbye. I might just make you sit still while I tell you how much I love you.
But in the midst of goodbyes, there was one big hello. One of my goals for this trip was to bond with Nicki’s daughter Callie. From everything I’d heard, she’s just like her mom was at that age. Which meant I had to meet this girl, come hell or high water. I wondered as we planned this trip and as we traveled whether meeting Callie would meet my expectations. Callie is five, and measuring up to five year old Nicki is a tall order. But I also wasn’t sure Callie would warm up to me. You never know with kids. So I tried not to get my hopes up.
The rumors were true, beyond my wildest dreams. It took maybe twenty minutes for Callie to climb up in my lap. As the weekend went on, we drew pictures, played games, and I pushed her on the swing. Each time we went out to eat, she wanted to sit next to me. We bonded almost instantly, just like her mom and I did almost thirty years ago. It was amazing. Nicki’s three year old son Kellan also seemed drawn to me, and I’m told he’s normally shy. The first night, Nicki said it was like “suffer the little children and let them come to Mark.” I loved it.
I doubt Kellan will remember me, but I’m sure Callie will. Sharon and I made an impression on her, and she definitely made one on me. What I wouldn’t give to be in her life all the way to adulthood like I was with her mom. Like Sharon will be. But being remembered will have to be enough. That's true for so many young people I've gotten to know since I was diagnosed. I wish so much I could see you reach your potential, but being remembered will have to be enough for me.
The G word for this weekend wasn’t Goodbye, it was Gratitude. I am grateful for a nutritionist like Katie, and friends like Jan. I am grateful for beautiful children who become admirable adults, and who are like what I hope my children would have been. I am grateful for the time I got to bond with one little girl. I am grateful for love.
Saying my goodbyes doesn’t necessarily mean saying goodbye. It means making sure nothing is left unsaid. One of the few good things about dying this way is it gives me time to say my goodbyes. It gives us time to say whatever needs to be said. That’s what I did these past three days, and it’s a big part of what I’ll continue to do until my time comes. When it’s your turn, we might not even say the G word. We might just talk about love. #waroncancer #bearingwitness