Dr. Thomas Lehner shares his transplant journey

Dr. Thomas Lehner shared these thoughts during the 25th Bone Marrow and Stem Cell Transplant Program’s Patient Celebration in September 2018.

Thank you, John, for inviting me to share my story. My name is Thomas and I had a stem cell transplant on March 10th 2016. I am here to tell you about myself and how I got here.

Often, when people tell stories they hope the audience can relate based on their background, be it social, political, economic, or cultural– you name it. In this room tonight, no matter what your background is rich, poor, republican, democrat, straight, gay, whether as a patient, family member, loved one, or friend, we share the experience of having gone very literally to the edge of life and back. Alone or together, we have become intimately acquainted with our mortality.

Since I have to begin at some point in time, I want to start in 1984–and no, this is not a political allusion, not yet anyway. I was 24, I lived in Vienna and I was an aspiring biologist and working on my dissertation – I did not quite know what I was going to do with the rest of my life, but I was feeling the constraints of old world Europe and had already set my eyes on the New World, where everything seemed possible. This was at a time when young scientists were still welcomed here and I made plans for a new life. Had you asked me then where I would be in 2018 I would have had no idea. I literally could not project that far into the future. If pressed I would have guessed that I would have been uploaded into some virtual reality by now. If you had asked in 2014 when I was diagnosed with AML where I would be in 2018 I would have said that I would, well, not be.

Yet here I am.

People say that when you turn 50 your outlook on life changes for the better. That seemed true for me. In 2010, I was looking back at almost a quarter century living in the US. I had made a life here. In many ways, I lived my version of the American dream. I had become a citizen, and

experienced a modicum of success as a scientist. I lived in our nation’s capital, and had a job at the National Institute of Health that I loved. I had finally stopped fretting about being single and had my future planned out. Life was full of interesting work, culture, books, travel and exercise. I had discovered running in my forties and had become quite the athlete. I would run for hours, 2,4 sometimes 5. Especially on weekends I was out all day, no matter the weather. In those days my worry was Alzheimer’s disease. My dad had been diagnosed with an early onset form of the disease and I was concerned that this might yet mess up my plans for old age.

Then something odd happened, not overnight but gradually. I noticed that I had less energy. I had to take naps during the day; my running slowed down too. I immediately went to see my Primary Care Physician and they found nothing wrong, a cold perhaps. Relieved – I went back to living my life and of course running. This went on for a while. I slowed down more – hey by then I was mostly walking.

What was going on? Back to the see my doctor. Again, nothing wrong. I guess I am just getting old.

What are these bruises on my body? Must be because I am clumsy.

Finally, after 3 years of this my counts had dropped low enough to warrant attention. I was referred to a hematologist. And so, it began.

I am sure you all remember those interactions as vividly as I do. A call while I was at a birthday party. “Thomas, there was something odd about your counts come in this week let’s do a biopsy after all.” I was less horrified by the implications of needing a biopsy than by the procedure itself. I had watched one on YouTube and it was terrifying. How innocent I was – now after having had 12 of them I know that this was the least of my worries.

I still remember when I finally entered the land of the ill. It was a Thursday evening about four hours after my biopsy. I was laying down nursing my hip and watching the news hour when the phone rang. My hematologist turned oncologist in an instant. “Thomas you have AML and you need to come in to start chemo tomorrow.”

I don’t know how you dealt with this abyss before you. But I went straight from my bed to my computer and googled AML. When I came back up from an hour long frantic meditation on leukemia, it’s prognosis, survival and, of course, BMT, I finally started to make calls. Having negotiated a weekend reprieve I needed to get my affairs in order and tell everyone that Alzheimer’s was likely not going to be a problem for me. And I think this is actually how I started many of these conversations.

One of these phone calls was to my mother. How do you tell your mother? It was a fraught moment. I remember sitting on my balcony on Friday morning when I called her. This will probably only mean something to the physician scientists in the room but after I told her I had leukemia the only thing I could think of saying to her, was that cancer is the price we as humans pay for being a multicellular organism. My mother, not being a biologist, had no clue what I was talking about. I guess what I was trying to tell her was that without cancer, a disease that afflicts multicellular and highly complex organisms, there would not have been long living apes that build civilizations and become scientists and artists, there would not have been a Mozart or Darwin or a Toni Morrison. It may sound corny but to this day it helps me to make sense of it all. My mother, in turn, reminded me that parents are not supposed to outlive their children.

I am an optimist, a therapist once called me a “romantic idealist,” and I like that designation. When I started my treatment, it was with trepidation but not a lot of fear and perhaps even some bemusement at the seeming absurdity of it all. Of course, it turned out that not knowing what lay ahead was a good thing. I remember about two weeks into my induction when I came crashing down with infections everywhere in my body a nurse suggested that it may be time for diapers. I laughed her off briefly then the diapers went on.

A few days later and I remember this vividly, I was riding on an elephant to the ICU with the Indian goddess Kali in tow. When I came to a couple of weeks later and 25 pounds lighter the elephant was gone as was my ability to walk or stand up or do anything much. I was too frail to make it to the bathroom or the shower. How do you recover from this? Luck? Time? Yes! But also, sheer defiance.

I noticed this streak earlier on when some whipper snapper intern kept announcing to his colleagues “he has heart failure” – he would say this repeatedly as he was commenting on the state of my edemic legs, which looked like tree trunks. I was outraged and defiantly retorted ‘no he has not”. Tree trunk legs may have been a sign of heart failure, but I simply refused that reality.

There was also an instant when I was in the ICU, where I responded to an overheard comment that I would be dead in 3 months with a loud “No, I won’t.” This may be entirely apocryphal because I remember very little of my time there, but it sounds plausible.

When I was finally able to get up and shuffle around the ward I was told I needed a walker. And honestly, I did, but after a round of that I said no. No more walker. And between my infusion pole and Winnie’s hand I was good.

I always thought of this attitude as less of a sign of resilience but more one of “you do what you got to do”. And this “you do what is necessary to survive” attitude has become a guiding principle in my recovery.

When it was between going to rehab or going home. I was ready to go home,- well I was not really ready but I wanted to go. Among other obstacles there were those pesky stairs up to my house and up to my second story bedroom. Easy problem to solve. Sit on your butt and push yourself up step by step.

For a while the only exercise I was able to do was short walks. This was complicated by a lack of stability. It must have been the Tacro. I did not feel frail but I kept falling and falling …. And after every fall I would get up and go on. Bloodied, often laughing at myself but always undeterred. I must have fallen 10 times in the first year after my transplant.

When osteoporosis broke my right hip. I went walking, only short distances and on Oxy no doubt but walking I did. When the right one healed and the left one broke I did the same.

When it was time to order depends – I did. They are not very comfortable though. If you don’t have to skip them if you can.

All this exercise business was quite frustrating but necessary. And I was not really making a lot of progress, at least I thought I didn’t. I remember the endless fatigue, the nausea, the snail’s pace of recovery. I hit my first home run when I discovered the pool. I will never forget the moment I went into the water and for the first time in years I felt whole. It was an epiphany, the water was like silk and swimming soothes me to this day. If you haven’t tried it and you are well enough go for it.

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Thomas Lehner talks with Siteman’s John DiPersio, MD, PhD, at the Bone Marrow and Stem Cell Transplant Program’s 25th Patient Celebration.

All this reminds me of John’s story about Ernest Shackleton that he told us last year. It resonated with me then and it does now. We endure because we must and because we can. When people come up to me and say that they couldn’t do it, that they would just give up. I always tell them you would if you had to.

Of course, it is not all about surviving at all costs. Every few months, and this is now definitely not apocryphal, I used to examine my place in the world with a simple but loaded question: is life still worth living? and every time I was able to answer this in the affirmative.

Of course, There is an emotional toll to pay for all of this. One of the more surprising aspects about my treatment was the emotional trauma that was inflicted on me. I am not talking about the fear of death though I am sure that played into it but about the uncontrollable storm of emotion that has washed over me at times. It was almost like PTSD.

At the end of my month long initial hospital stay and having had a room without a view I was dying – well not literally any more – to go outside and see a tree. I was obsessed. I tortured the nurses and doctors to let me step out for a few minutes and made my friend Winnie, procure a wheelchair and we escaped. Winnie had tirelessly been by my side for the entire month and stayed for many more to come. The hospital is located in a beautiful lush neighborhood in D.C. and as soon as I finally saw my tree it hit me hard and I broke down crying and I knew I was still alive. I have become quite the tree hugger since.

I would go about my daily business, shopping, or talking to people or giving a talk, something would trigger me and I would break down. That is also why I came prepared today with everything written down in case I can’t go on and need to read.

There is a little farmers market near my house and in that particular season a new pastry chef was selling her croissants. I am Austrian American and the Austrian in me takes pastry very seriously. I had been buying her pastries and we were engaged in an ongoing discussion on the finer points of baking before I left for the hospital. She had not seen me in many weeks and it took her a moment to recognize that ephemeral creature that was me when I visited her. She was so shocked that she filled up a bag with pastries and handed it to me with the words please eat. You can imagine where this ends I broke down mumbled a thank you and walked away. With the pastries of course.

It has only been recently that these emotional hurricanes have abated and I am grateful.

On hope and gratitude, I don’t think one can be diagnosed with Leukemia and go through a BMT without being hopeful and thankful.

Hope has always been part of my fabric. Sometimes I may have been naive but most of the times I hoped because there is always a reason to go on. There were a few moments though when hope seemed to dissipate, to void from my presence. I am sure many of you have experienced these moments too:

The time when Catherine, my always upbeat oncologist, responded to my cautious “I feel better now” with a defeated “but your counts are really low, and it’s time for a transplant.” Or the time when another oncologist speaking for a large transplant center that shall remain nameless – of course not John – told me that I won’t qualify for their program because I had allegedly relapsed; or the time when for a week we all thought I actually had developed a new cancer.

This was a very long week that I will never forget, as I will also never forget the elation that accompanied the news that it had been a false alarm. These were moments when ever so briefly I entered the valley of darkness. And that was hard. But surviving a “bad cancer” is all about hope. The hope and the gratitude that comes with people like Tim Ley, though not my

treating physician, was willing to become my AML consigliere and counseled me on my treatment. He had the brilliant and lifesaving idea to introduce me to John DiPersio. John who agreed to take me on because he takes on difficult cases because for him it is not just about a favorable statistic. It is the tireless work of the people overseeing the registries and the awe and hopefulness I felt when I heard that there was a perfect match for me.

It is people like Peter Westervelt who made sure I was aggressively treated when I needed to be and when I was very anxious that I would not engraft – it was only day 3, but I was freaking out – Peter looked me in the eye and said very confidently that I shouldn’t worry that I would certainly engraft. He made no promise beyond that but he said this with such conviction that a huge burden lifted from my shoulders.

The wonderful nurses and all the staff and the volunteers at Siteman gave me hope and continue to do so. I would not be here without them.

Stephanie Bauer and Kathryne O’Brien thank you!

My donor, what a selfless man who I will never meet. What I know about him is that he is 26 has a little boy and is a fireman from France. To all you donors or potential donors I bow to you in gratitude. Did you know that there are volunteers for international donations who get on commercial planes to bring the donated tissue to Siteman? They spend a night at a cheap motel and return to their home countries the next day. We can only hope that they will continue to get visas when one is needed. None of these folks get any recognition other than from our hearts.

My friend Marlene who without hesitation put her live on hold and moved with me to St Louis because I needed her.

All of you are my heroes. Winnie, Marlene, Olu, Abdul, Susan, Kathleen, Neil, Audrey, Marcia – thank you.

All my friends who stayed by my side during my trials – thank you. All those who did not – I forgive you.

How is my life now?

For one I am always broke. This is because I had stopped saving for retirement for the last 4 years and am now frantically trying to catch up. So, I am probably one of the few people who can say I am so lucky to be broke.

I have become kinder and more aware. I always was a nice guy but this experience has shown me how little most things matter, I don’t sweat the small stuff anymore. I know how important friends are and how valuable kindness is. This is particularly poignant in today’s world so full with hatred and division. I feel as a human being and a cancer survivor I am compelled to speak up for people who don’t have a voice and do not experience the privileges that I do. And I am not only saying this because it is a moral imperative but also because it is practical. There are many ways that the unhappy loaf of otherness can be sliced and I know cancer is in there

somewhere. And they will come for us.

As I continue living I love life. When I leave my house and feel the wind on my skin and can see the world with my eyes and smell life around me – I am happy. Life is beautiful. However, it is short and I have outlived my biological programming by 4 years already, and I probably won’t make it to my actuarial lifespan of 91. No matter, I have already had an interesting life, maybe not as exuberant as Rutger Hauer’s character in Blade Runner, but I gave it a go and it has been good. I want to live everyday of what is left not believing that it is my last but living it as if it were.

Thank you