Transplantiversary

Cake

Yesterday was my 2nd transplantiversary. The first thing I would like to do is thank Rebecca Friedman for that term.

You see I used to use, and many do use, the phrase new birthday. After all, my new blood system turned 2 yesterday. But here’s why I am no longer happy to call it a birthday (though I am still welcoming presents). For me it is not a remembrance of when my blood system started, or that some new life that began two years ago. For me it is a time to remember, appreciate, and recognize all those that made this new lease on life possible.  

I would not be alive today if it was not for my son whose first day of college was spent face down, anesthetized as 50 probes extracted over a liter of bone marrow. I would not be here without my transplant oncologist Dr. Horwitz, his amazing nurse practitioner Kristi Wiggins, or the entire care team at Duke.

But just as important to my recovery was my wife who was my constant advocate, memory, cheerleader, drill sergeant, and ultimate reason to go on living. Also, my mother who was with me the first week before the transplant, stayed with me for weeks during the transplant, and who, with my step-father Bob, uprooted their life so that my sone Andrew could stay at home, at school, and cared for.

When I unveiled the beautiful cake Nikki Gilbert made for the 2nd anniversary, Andrew, my youngest son, said that this was really a celebration for me and Riley – he didn’t do anything. It was a great opportunity for me to explain just how wrong that statement was. Knowing he was doing well in school, having him send me jokes and memes, knowing what a great man he was growing into was essential to me persevering. I also wanted to acknowledge the toll this took on him. The uncertainty, the stress, the trauma of a parent in with cancer is a very real cost to be paid, and his contribution to that cause is equal with a donor and a doctor.

TO this list I have to add my sister who supported me the whole time and did time as a caretaker. Her life was in the midst of major change, and she took the time to lift me up.  This anniversary is very much a remembrance of my work colleagues that covered my responsibilities at the university and advanced the school while I was in treatment. From classes covered, duties accepted, and meals delivered, I can never express how much their support mean to me.

And this support extends to friends and colleagues that sent notes, and cards, and simply let me know that I mattered, and they cared.

A birthday is a time for celebration, a transplantiversary is a time for gratitude and reflection. It is a time to remember earnest talks with my wife about what my funeral arrangements should look like. It is a time to be glad that after months of chemo and treatment I was unable to climb stairs, and now go for (nearly) daily 3 mile walks with my dog. It is a time to be grateful for good health care that paid out hundreds of thousands of dollars and the recommit to advocating for health care for all as a right. It is a time to recognize that cancer will always be a part of my life, has shaped my life, and deepened my appreciation for life.

Celebrating a transplantiversary is an easy thing to do, and I invite you all to join in. Donate blood. Give to the Leukemia and Lymphoma Society. Hug the ones you love. Write a person you know wrestling with cancer just to say you were thinking of them.

I’m sorry I didn’t get a cake big enough for all. But do know that you are in my thoughts and you have my thanks. Next year we’ll celebrate outside of our house and without masks.

2nd Annual Lankes Family Red Cross Blood Drive

A Message From the Lankes Family:

Please join us on Wednesday, June 3rd, from 1-7p.m. for the 2nd Annual Lankes Family Red Cross Blood Drive. It will be held at Holy Cross Church in Dewitt, NY.

David was diagnosed with Hodgkins Lymphoma in 2013. He underwent a stem cell transplant and is now 1 year cancer free! This blood drive is a way for our family to give back to the individuals who helped save his life.

Last year, our goal was to collect 50 units of blood and thanks to the generosity of our friends and community, we were able to collect 66 units! These units helped 198 individuals! Please consider taking time during your day to help us save lives. To schedule your appointment, call the Red Cross at 1-800-RED-CROSS or visit www.RedCrossBlood.org.

All donors will also receive a Red Cross t-shirt!

As an added incentive, and to tell you our story, We’re making David’s latest book, The Boring Patient, available as a free download leading up to the event.

Click here for the Kindle version

Click here for ePub

Any updates or additional announcements can be found here.

My First Re-Birthday

One year ago a lab technician thawed out six syringes filled with my stem cells. She handed them one at a time to a doctor. Over the course of about an hour, and under the direction of a nurse practitioner, that doctor pushed those cells into my heart and saved my life. Saved my life most immediately from lethal chemotherapy that had destroyed my bone marrow and more generally from cancer.

Over the next 14 days my body systems would begin to breakdown – unable to be replenished by my body’s now silenced blood cells. I would be kept alive through blood transfusions and I would be isolated from the world to avoid simple pathogens that could be fatal to a man with no immune system.

Throughout this whole process my wife and mother stayed by my side and got me to walk and eat and hope. My brother-in-law supplied feedback and teaching. Nurses cared for me. Doctors monitored my progress and ordered transfusions and medication. Friends sent in cards, colleagues covered classes, and my distributed social network transformed into a cheering section wishing me to health.

To my wife, my mother, those nurses, doctors, friends, colleagues and the network thank you.

Today. Today. Today.

This semester I am teaching a class in self-publishing (Publish or Perish: From Monks to MOOCs). This post is the result of my most recent self-published book, The Boring Patient.

There are a lot of reasons folks self-publish a book. Some for fame, some for money, some because they have something they want to share. In most cases it is a combination of all of these. Throw in the increasing ease of doing it yourself versus the difficulty of breaking into “traditional” publishing with agents and such and you have the amazing increase in self-publishing.

I’ll be honest, when I published The Boring Patient I was interested in selling books and making money in addition to simply wanting to share my message. It was nice to have a pretty paper book to give out to friends and family, but somewhat discouraging when I didn’t sell thousands of copies (yet). Then I was invited to do an interview on the book for a locally produced public radio show on health matters.

The interview was recorded (you can hear it here) in the same hospital where I had been diagnosed with and treated for my cancer. After the interview I went up to the oncology and bone marrow transplant ward. I had spent 25 days in the transplant ward walking 31 miles 42 steps at a time. I saw a nurse who remembered me. She have me a hug, and I gave her a book. Then I went to the general oncology ward where I had spent a month when first diagnosed.

As I turned the corner, a nurse I mentioned in the book saw me. This is the passage about her from the book:

Here is one of the most poignant moments I have had in my life, and frankly, if you take nothing out of this book but the following story, I would be very happy. As the fellow lowered the bed for more leverage to push into my skeleton she requested a steel needle to bore into the crown of my pelvic bone. A nurse who had been taking care of me came to the head of the bed, and with one hand gave the fellow the steel needle, and with the other took my hand.

For the next 10 minutes that nurse asked me about my job, my kids, my wife, where I liked to travel, anything to keep me talking. Meanwhile the fellow continued to lower the bed for better leverage. She was getting direction from another doctor…it was the fellow’s first bone biopsy – great. As soon as the fellow removed the needle, the nurse let go of my hand, walked down to the lounge where my wife was losing it, and told her, “You are planning his funeral, stop it.”

Now here she was, and before I knew what to say she hugged me. She proceeded to tell me that she not only heard about my book, but had given it to the head of medicine, her fellow nurses, and even patients. She asked if I would be willing to talk to patients and possibly be involved in some staff development. To say that she made my day is an understatement. I told her I was at her disposal. If she needed me to talk to nurses or patients or doctors, I would be there. It would be a pleasure to give back.

As I was leaving the floor, she found me again and asked if I had time to talk to a patient. So I was soon sitting next to – well – me really. Me from twelve months ago. Hair gone to chemo, port connected to a pole pumping in chemo. We talked for the better part of an hour about cancer, stem cell transplants, chemo, pain, family, drugs, dying, and getting through it all. After the better part of an hour I left. What hit me at that moment was that if I didn’t sell another copy of the book, it had already accomplished more than I could have hoped.

Which brings me to this post. Turns out my story has been used in an Italian course on “The Sociology of Health” (Google translation). I wrote a brief post for the class and received these questions:

Good evening, it’s a pleasure to talk to you. I have two questions.
How has this experience of disease changed your life? And how the narratives clinics can change the concept of care of and public health? Thank you for your availability.

That is not a set of answers I can easily squeeze into a Facebook comment. So with that very long preface, here are my answers:

On the matter of what clinics can change around the concept of public health, I think the short answer is that clinics don’t make you healthy. Doctors, drugs, and treatments don’t make you healthy…they are a crucial PART of your health. So, however, are you. It takes a team of committed professionals, patients, and caregivers to get and stay healthy. All members of that team are important, all must teach and learn from each other, and the key is knowledge. That nurse holding my hand was as important to my treatment as the steel spike piercing my bone. Me taking my pills was as crucial as the doctors writing the prescription, and the pharmacist who ensured the correct dosage.

How has this experience of disease changed my life? Wow. There are the expected answers. I have come to appreciate my family and friends more. I have seen how powerful the caring and contributions of even remote acquaintances can be. Meals, sitting with me, lottery cards, Christmas caroling form library students via Facetime, all can be overwhelming. They show that people care that you are alive.

Then there is the more truthful, and frankly painfully personal answer. I don’t know yet.

It has been nearly a year since my bone marrow transplant. While I was living that year it felt like a straight path of recovery. Every day feeling better than the day before. Every day stronger. Now I can leave the hospital, now I can leave the house. Now I can travel by car, now by plane. A first clean PET scan, then another, and another. Always getting better; always moving forward. That’s the way health is supposed to work. You get sick, then you get treated, then you get better. It certainly seemed like a straight line at the time. Feeling better, then joyous, then more work and more impact; always forward. Always joyous.

But looking back on my “first year” I do not see a straight path. Yes there is the forward path of my body, but all around it is the sometimes jarring emotional swerves and bucks and skids. Always joyous? Joyous and relieved and then depressed and lost. Is it my mind, my body or the latest drug side effect. Always forward always forward until you stop and breath and want to crawl back into bed for no reason. No reason. But you try and find one to explain the fear and anxiety and depression when yesterday was joy. You take out your mental checklist: Drug change? Insomnia (again)? Bad food? Am I sick – oh God am I sick?! Where’s the thermometer. How’s my breathing and my chest? There has to be a reason, it has to be physical right? I don’t get anxious, I don’t get depressed. I’m the brave one, the strong one, the cancer is gone. I’m better…right?

Then they are there. Your wife who hugs you. Your kids joke with you. Your friends and your mother are there. And it is not so bad. Sometimes it is still bad, but you force a smile, or a joke…and then you fool yourself too. Better. Out of bed. Then joy…thank God that in all that swerving and bucking, joy comes.

Today I am better. Today I have survived a year when many would have died. Today I have a chance for joy. Today I can have the straight path…or perhaps today I will once again skid and buck. But I can do that. And maybe today as I slide and skid I can also close my eyes to just feel the rush of wind on my face. And today as I look down and see hands that every day resemble more and more those of my dead father I can remember him. And today as I try something new I can applaud myself for courage – get out of bed – get out of the house – get out of my head and do the most sincere prayer I know: today I will make the world a better place. Today I will use my gift of life to help others. Today. Today. Today.

The Boring Patient Reviews are In

Gold starMy new book The Boring Patient has been out for about 2 months and the reviews are starting to come in. Available as a paperback, ebook, and audio book here are some highlights.

Amazon (5.0 out of 5 stars)

5.0 out of 5 stars an inspiring but realistic journey of a great man dealing with cancer

5.0 out of 5 stars Should be required reading for all

5.0 out of 5 stars The Boring Patient will allow you to do this, all while being entertaining and emotionally accessible.

5.0 out of 5 stars This book adds real and unique value to the pantheon of books, including personal stories, about dealing with life threatening illness.

5.0 out of 5 The combination of humor, criticism of the medical system, and description of an emotional cancer experience make this text multidimensional, and a quick read.

GoodReads (4.8 out of 5 stars)

5.0 out of 5 Best cancer patient narrative I’ve ever read.

LibraryThing (5.0 out of 5 stars)

5.0 out of 5 Most impressively and importantly for those of us involved in training-teaching-learning, Lankes never loses sight of the important role he plays for his readers—the role of someone who makes information meaningful to those of us receiving it through the book.

Announcing The Boring Patient Audio Book

PromoJust in time for the holidays, you can now listen to my recent book, The Boring Patient, read by the author as an unabridged audio book (3 hours 17 minutes).

How better to celebrate things like giving thanks, family, people coming back from the dead, and…candles, than with a book about cancer. No reindeers or elves, but there is chemo and stem cells!

So celebrate the season with Bringer of Doom, discussions of naked mole rats, and the threat of certain death! Not to give away the ending, but the main character lives.

Get it via

Amazon
Audible, or
Apple

(Make sure you check around, as I have no control of the pricing and they do vary by outlet)

Moving Forward 42 Steps at a Time

Three weeks back I gave an ending talk at the ILEAD U project. It was about overcoming fear and resistance, and the importance of building a team that will encourage you to move on. A few folks told me how that message was important outside of the context of librarianship and the project. Upon request, I have written down my thoughts for a more general audience. If you would like to read more about my journey with cancer, please consider my book, The Boring Patient.

The Parable of the 42 Steps

IMG_1530The stories we tell help us make sense of events in our lives, as well as helping others learn from our experiences. Many have asked me what my journey with cancer taught me. They comment on hard it must have been, or how scared I must have been, or how reflective I must have been. My reaction is normally to minimize the difficulty of my treatment, preferring humor and looking forward rather than focusing on a dark chapter in my life. However, recent events have shown me that in the darkness I can find something to share for those who are struggling in their own lives: be it in work, in a relationship, or simply to continue forward in the face of a creeping push to simply stop, lie down, and give up. For me, one of the key lessons I learned happened in 42 steps.

What many people do not talk about when they recount life in chemo, is how small your world becomes. In the years before cancer I traveled to Austria, Rome, Amsterdam, Australia and China. I spent a fair amount of my time in the air going from talk to talk as a professor. When my illness first appeared as a set of seizures, and then as a diagnosis with Hodgkin’s Lymphoma, my world shrank. What had been moving from home to work to the world became moving between work, home, and the hospital.

After six months of treatment, work, home and hospital came the devastating news that the cancer was still there. Still there and growing again. Still there and killing me. Still there and requiring another, more extreme treatment. As one doctor put it: where the first round of chemo was hitting me with a hammer, I needed one that would hit me with a sledgehammer.

My life shrank again from the work to home to the hospital. Eventually as the toxins took their toll, my world became simply the hospital for treatment, and home to recover. The end of this process was a bone marrow transplant that meant my world shrank from home and the hospital to just a hospital ward 42 steps long; locked away from the world, my friends, and my children.

IMG_4983The process began by checking into the hospital and being hooked up to a rolling metal pole that held a pump that shot a steady stream of chemo into my blood stream. That was day -9. On day -1 nurses fed me a steady stream of ice chips to slow the circulation in my mouth. The last toxin, Melphalan, would tear through my digestive system from entrance to exit. Ice hips slowed circulation in my mouth and would minimize open sores in my cheeks and gums. On day 0, my stem cells were injected, and the transplant process began

As the days rolled on my blood cells died with no marrow to replace them. My body’s vital system of feeding and repairing itself began to falter and fail. I was tired, every swallow felt like shards of glass and barbed wire being dragged down my throat and into my chest. At night, nerve damage lead to uncontrollable twitching, robbing me of sleep.

The nurses told me that one key to a successful transplant was to walk. So every day I would walk. Every day consisted of 42 steps up the ward, and 42 steps down, up and down, over and over. As my blood counts dropped, I walked. The nurses would feed me painkillers, and anti-nausea drugs and tell me to walk. 42 steps up, 42 steps down.

As day 0 become day 3 and then day 5, it became harder and harder to get out of bed, but my wife would come into my room and tell me to walk: 42 steps up, 42 steps down. As my muscles cried out for oxygen from a crashing red cell count, and the remaining toxins tore up my gut, my mother would visit, and tell me to walk. 42 steps up, 42 steps back, 42 steps up, 42 steps down. Ativan for the twitching, 42 steps. Oxycodone for the pain, 42 steps.

IMG_4993My white blood count went to 0. My children couldn’t visit because a stray infection picked up from school could kill me and I couldn’t bear the thought of them feeling responsible for my death. I would try to sleep as every hour the nurses checked my temperature, pulse, and blood pressure. So at 1 in the morning I was awake. 42 steps up, 42 steps down. 42 steps up, 42 steps down. On day 9 I couldn’t get out of bed. I hurt, and was tired, and even the drugs couldn’t prevent me from wanting to give up. To stop the walking, and eating, and caring. All I could do was lie in bed and feel sorry for myself, and just want it to end…and the nurses and the doctors checked me, and tried to reassure me it would get better. And my wife? She made me walk “just 42 steps.”

Day 10 and 11 were better. My counts got better. My body began to repair itself. So I walked and I walked, and by day 14 they told me I could go home. I had walked 33 miles on that ward – 42 steps at a time.

I could end the story there: I go home, I’ve made it through. But that is not the moral of this story. You see, the real effort – the real work – was not in the transplant, but in the struggle to cope with a world that had to grow again

Leaving the hospital was not easy. People would say how relieved I must have been to go home. But to me it was one of the most frightening things I had ever done. I was leaving behind the doctors. I was leaving behind the nurses, and the drugs, and the HEPA filter, and the safety of an isolation ward. I was going home in the middle of cold and flu season, and a stray virus could kill me. Forcing my world to expand from a hospital ward to home and then to work was as much effort as getting out of bed on day 9.

Expanding my world was effort I never imagined would be so great. It was having a panic attack in the lobby of a library; my chest feeling like it was going to burst. All I wanted to do was run home or collapse into a fetal position on the floor. I called my wife: “go outside” she said ” go outside and just walk. Just start with 42 steps.

IMG_0189Expanding my world was getting on my first plane in over a year. I had to get through security – 42 steps through the line. I had to get to my gate – 42 steps to the gate. I had to get on the plane with a surgical mask and worried glances…42 steps down the jetway; 42 steps down the aisle.

And there it is – there is the point of the parable. We all have times when our world shrinks by choice or apathy. Maybe it’s going back to school where your world has collapsed into courses and textbooks. Maybe it’s a job that has become routine. It is natural to look at a bigger world with fear and anticipations of failure, it is natural to want to stay in bed: to say no more; to give up. That’s when you need to force yourself to take those steps. That’s when we all need a team to push us and say “just 42 steps.”

We all face challenges, we all have times of depression, or failure, or where we simply want to stop. These challenges are not minor or unimportant – you have every right and every reason to simply stay in bed, to simply stay where you are and give up. But you can move forward, even if just a little bit, even if it is only 42 steps.