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.

I’m Better…Now What?

[TL;DR version: I’m fine, but we all need to be better]

I'm a SurvivorMy good friend and colleague Jill Hurst-Wahl asked me to write a bit about my current state of health. I think she is tired of letting folks know I’m fine now, have been doing some travel, and not stuck in a bubble. I feel like I have said this, but have probably not put it in one succinct post. So…

I’m fine. I had a cancer free PET scan in June, and then another clean one in September. In three months I’ll have another scan, and then more after that as my oncologist follows-up. While there is no guarantee that the next scan will be clean, or that the one after that will be and so on; no one is promised a day on this earth, so I will take the bliss of cancer free for whatever period I’m given before a scan. For those keeping track 50% of transplant patients remain cancer free for 5 years.

I am not, in fact, living in a bubble. Yes, I am immune compromised and will be so for a few years. This is in part because I have a brand new immune system and partly because I have yet to get re-vaccinated for things like polio, and whooping cough (that re-vaccination happens in an accelerated fashion after 1 year). However, I have a working immune system that apparently does well with viral infections, but is more vulnerable to pneumonias (imagine how pleased I am to follow the recent news with Ebola and the Enterovirus).

I also have to be very careful with food born illnesses. Anyone would have problems with things like Salmonella and Listeria, but I would have a VERY hard time with them. So food needs to be served well done and hot. I also have to avoid buffets and food that has been sitting under heat lamps. Really folks, we should all avoid those…have you seen what people do at salad bars?

I also have, in fact, done a bit of traveling. I’ve done a few trips to Albany, to Fairfield Connecticut, and later this month I’m actually flying to Springfield Illinois to join my tribe at ILEAD USA. My doctors have given me the go ahead to get on planes as long as I wear a mask and douse myself in hand sanitizer. I think this is to freak out my fellow passengers so they give me more space.

I’ve been limiting my travel to mostly places I can drive to. This is really out of an avoidance of getting back in planes (those damn things shake in the air) than health issues. However, I am thrilled to announce that I have accepted speaking gigs in Liverpool (UK), Australia, and New Zealand. I’m also working on putting together a speaking tour through Italy in the summer (hey…want to host an academic in Italy this summer? Let me know). I’m also working on an idea to get me to ALA Midwinter in January.

Which brings me to a very weird spot. It would be very easy to fall back into a life of the traveling professor. I am teaching an amazing class of LIS students. I have offers to speak. I have a lot more to say on the future of librarianship. In essence, I have the incredible good fortune of being able to pick up my life where I left it before cancer.

So should I? As I have been recovering these past months I have seen a community I love, librarians, both profess noble principles (diversity, respect, concern for the well being of their communities, a call for greater service) and engage in the worst kind of pettiness, to the point of lawsuits and character assassinations. Do I really want to give more keynotes when the speaking contract seems to come with a target for my back?

When I had cancer I became part of an unfortunate club – cancer patients. It is an amazing club because it is amazingly diverse. Mothers get cancer, celebrities get cancer, children get cancers, black, white, yellow, old, tall, male, female all get cancer. Some of us blog, some us write books, some of us speak, and some of us become YouTube sensations. And no one-no one-talks about shiny cancer patients, or rock star victims. Because in that community, we are all rock stars, we are all shiny, and we are all deserving.

I have read your posts and your Tweets, and there are some great ideals expressed. Those with more attention, or more opportunities have a responsibility to bring along those around them. Yes. Those who live with cancer, who survive, teach. They teach their parents, and their kids, and their friends, and their co-workers. They teach because every cancer survivor knows they are alive because of the work and suffering of those who came before. My bone marrow transplant was a success because of literally thousands of people who died before me, hundreds who were willing to be a lab rat for new treatments, and doctors, researchers and nurses, who refused to stand by and allow more death. We teach, we write, we appear hairless on magazine covers because we have learned that every day without nausea or pain is a gift, and one that we must share for those who will come after us and need hope.

In the cancer club a 9 year old becomes famous…he or she inspires blood drives, and scholarship funds, and the building of new cancer centers. They are famous not because they “did cancer the best,” but because they can inspire others to action. Every rock star with cancer is reminded every day they are there, they are worthy, they are important not by autographs requested, but by platelets donated. Every cancer patient knows that in their veins course the immune system of others, their cells breathe due to red blood cells from across the nation.

I am shiny, I am a rockstar librarian, and people invite me to give keynotes…and when they do, I am keenly aware that I am there because of the work of mentors like Mike Eisenberg and Chuck McClure. I am there with the support of people like Liz Liddy, Corinne Hill and the wisdom I have drawn from Meg Backus. I am speaking because Lane Wilkinson took the time to argue epistemology with me; because Jill Hurst-Wahl lets me snark over lunch. I am there because of Mike Nilan, and Andy Dillon, and Kathryn Deiss, Scott Nicholson, Megan Oakleaf, Kim Silk, Wendy Newman, Nicolette Sosulski, Joe Janes, Barb Stripling, Ruth Small, Jeff Katzer, Todd Marshall, Anne Craig, Gwen Harrison, Joe Natale, Mick Jacobsen, Andy Bullen, Steve Thomas, Buffy Hamilton, Joyce Valenza, Joe Ryan, Bill Moen, Joanne Silverstein and an entire nation of genius. I am there because of Melvil Dewey, Ranganathan, Wilson, Buckland, Pask, and Taylor. I am there because my wife took the effort over two decades to beat out of me the misogyny that the Jesuits in high school used to push me forward. I am there because every year I get a sea of fresh faces of LIS students who push me further. I am there because of Mia, and Lauren, and Carl, and Bob. I am there because the librarians of Ferguson and Alexandria did their jobs in the face of uprisings, and the librarians of Fayetteville took a risk of 3D printers. And when I am at a conference, at work, on the Internet, or frankly anywhere, I behave with respect for myself and others because of those I represent.

I don’t think we need to get rid of Movers & Shakers. I don’t think we should get rid of Think Tanks, or Emerging Leaders or any awards that give librarians an opportunity to showcase how great librarianship is to the world around us. Do you think those awards are for librarians? Do you think these awards should be about self-congratulations or creation of a class system, or pushing one above the many? Do you think we place folks on pedestals for us to admire them? If that is the case, then tear them down. We must use all of these pouts of distinction as ways to scream to those that we serve that we are here, we are important, and we only succeed in the success of those we serve.

So be shiny and a rockstar and a leader. 3,000 years of librarianship are here to push you forward. But shine to your members, rock the worlds of your communities, lead the world to better days. That’s what I’m going to do with my gift of life…what about you?

Cancer Posts and the Boring Patient

Writing was part of my coping mechanism when going through treatment for Hodgkin’s Lymphoma and my stem cell (bone marrow) transplant. That writing was mainly in the form of blog posts. While The Boring Patient is much more than just a compilation of blog posts, these writings give you a good feel for the style of the book:

The Loss of Hope

You see, that’s the thing about hope – it is not a guarantee or a promise. It is a prayer, and desire, and it lies at the core of making this world a better place. We fight inequity, poverty, corruption because we hope for a better day. We teach because we hope we can impart some idea that will blossom into a better world for all. We raise children in hopes of a better future. We marry because we hope we can live up to the promise of our spouses. We work either out of the hope that our efforts will improve the world, or at least the wages of our labor can provide a better world for us.

Mundane Miracles

See the spectacular every day in the love of friends and family. When you wish your son would just be quiet, remember the wonder and thrill of his first word. Make the next peck on your wife’s cheek rekindle the passion of your first kiss. And laugh – every day – laugh. The world we live in is a wondrous mundane miracle. Rejoice in it.

Beyond the Bullet Points: PET Scans and Water

Now I would like to describe to you the immense awkward feeling you have when in a small examine room with your wife when you are told that your “salvage treatment” (actual medical terminology) is not working. You can’t lose it, or your wife will, and you have to be brave and not wanting to wail like a little girl amongst nurses you have come to know and like. I would like to describe that for you, but before I could figure it out there was a knock on the door.

Personal: Victory through Surrender

Then there is a final thought, a crucial insight that must accompany the surrender. If you accept the treatment, and the limitations, and the proxy battle, you can then focus on the other things in your life. You can focus on your son’s graduation. You can focus on your wife’s affection, and the love of friends. You can focus on your work, and your mission, and all the things that will be waiting for you after the poisons and the drugs, and the pain, and the limitations.

Percoset and Puppies

Cancer does not make me noble. It makes me afraid and sick. It makes me every day make promises of redemption to my family, friends, and co-workers. “Next year, we’ll do our anniversary in Hawaii,” “next birthday we’ll have a big party,” “next time I teach I’ll pay more attention.” My life has increasingly become a promissory note; one conditioned upon survival.

Click here for more of my cancer posts and Read a sample chapter and learn more about the boring patient here.

Cancer Videos

As part of the roll out of my new book, The Boring Patient, here are two videos I produced through the stem cell cancer treatment:

The actual stem cell transplant. The whole procedure took over an hour, so here is a much more watchable version. If you look carefully you can see a priest do a drive-by blessing at 1:37.

[vimeo 87505187 w=500 h=281]

“Face Journal” from biopsy to day 100 of the stem cell transplant.
[vimeo 97336093 w=500 h=667]

Sample Chapter from the Boring Patient

The following is the first chapter from my new book, The Boring Patient. Buy it now:

You can buy it now via CreateSpace (my preference) and Amazon. You can also get the eBook via Amazon (and Amazon Unlimited).

Chapter 1: Getting to Know You

I strive to be the boring patient. In the hospital, or during chemotherapy, I want to be the charming man who only requires a vitals check or a scheduled chemo dose. You don’t want to be interesting in most medical settings. Interesting means complications, and that is bad. I did not originally set out to be a boring patient. I never set out to be a patient at all. I’m a professor, a husband, a father, a speaker, a writer…but a patient? A patient, sick, needing to be cared for, weak? No.

Now don’t get me wrong, I was hardly without my run-ins with the medical profession. I used to say that if it was hard to diagnose, painful, annoying, but not life threatening, then I would have it. Kidney stones? Yup. Digestive issues? You know it.

I remember the faces of the doctors in the emergency room when they told me I had gallstones. My wife had rushed me to the hospital because I was doubled over on the kitchen floor in pain. After many tests and hours the doctors came into my room looking very earnest and told me “gallstones.” I cracked up. Seriously, laughed like a maniac…painful, non-lethal, that’s me. I should take bets on my appendix and tonsils.

It was around 1994 during my doctoral studies that I realized that it was pretty much my brain versus the rest of the meat that made up my body. Ken Robinson[1] puts this beautifully when he describes the structure of America’s education system. He says when you are in kindergarten your whole body is involved in learning…singing and moving. By about second grade we have students sitting in chairs to learn, losing the lower half of the body. As the system continues through middle school, to high school, to college we use less and less of our bodies: hands to write, arms to raise. If you go to the extreme of that system, your Ph.D., you end up inside your head, and slightly to the left. The rest of you body is only used to move you from meeting to meeting.

This meant I didn’t really give my body much thought other than waiting for the next weird thing to happen to it…I mean me. I was (am) fat, balding, and ate like crap (sorry ladies, he’s taken). I’ve had 7 kidney stones with no real explanation as to why or how to avoid them – instead opting to carry around powerful painkillers just in case I had another stone during a transatlantic flight. I had my gall bladder removed, and was one of the lucky 10% of folks that develop “bile malabsorption issues,” that means taking a chalky powder every morning or having to run to the bathroom at 2:30 every afternoon. I have Irritable Bowel Syndrome that means even with the powder there is an excellent chance I will be running for the bathroom at all times of the day anyway if I eat the wrong thing.

By the way, fun fact, know why they call it a syndrome? It means the medical community has no real idea of the cause. It’s like telling the doctor, “Something’s wrong with me, but I don’t know what it is,” and having the doctor say, “Yes, I agree,” and then billing you.

This set of annoying medical interactions is why, in some ways, it was a relief when I was first diagnosed with Hodgkin’s Lymphoma. It was something real. It had a name and a treatment and a plan. It could be made boring. It is a cancer that comes with a built in schedule. Chemo on days 1 and 15, then 15 days off. What was chemo? Sitting in a chair for four hours. The chemo regime, called ABVD (so called after the toxins used: Adriamycin, Bleomycin, Vinblastine, Dacarbazine) is almost 30 years old.

But through the infusions, through the surgeries, through the scans, I learned something very important. I may be the boring patient, but I could never be the passive patient. To be boring is not to be idle, or ignorant, or complacent. The road to my health did not and shall not come from simply following the instructions of a doctor on high. Rather it will come from me learning, and integrating a whole host of talents and expertise.

But I am getting ahead of myself. I should explain a little about this book, and why I am writing it. This book is not about cancer. It is about my response to being diagnosed, living with, and being treated for cancer. That is an important distinction because cancer is not funny. Cancer sucks. Cancer does not teach, cancer does not preach, cancer does not comfort, or inspire, or inform. Cancer kills. How one responds to cancer? That is a completely different matter.

With that out of the way, and before we start with the whole response thing, we should get to know each other. I know I am writing this for myself and my children (when they’re old enough to get all the jokes), and I think it could be useful for others living through a journey with cancer. However, the folks I really want to read this are in the business of delivering health care like doctors, med students, nurses, and medical administrators. So here are a few words for those groups to put them in the right mindset for the book.

Dear Doctors

Hi. I come humbly before you to suggest you need to change. I know that doesn’t sound too humble, and I wouldn’t bother you, but I think the changes I’d like to talk about are very important. I know you’ve done a lot of hard work to get to where you are today. I know the work you do is noble. However, I think your profession is changing and not all in a good way. What’s more many of these changes aren’t in your control.

I say these changes are important not only as a patient, but as a professor and information scientist. I don’t roll out my credentials as a way of sounding important, but more as a cautionary tale. You see I am a tenured full professor at a research university and in the past 5 decades folks like me have gone from the norm in academia to the minority. Have you noticed any discussions recently of calling doctors “health care providers,” and patients “customers?” Have you noticed how much time you spend learning how to enter what you do into a computer system, and less in actually performing medicine? How about this one…have you noticed how as more doctors head to administration they are being replaced not by more doctors, but other “health care providers?” Have you noticed a change in environment that has led to 9 out of 10 doctors recommending folks NOT go into medicine as a profession?[2]

I’ve studied a lot of professional service providers (teachers, professors, librarians) and there are moves afoot across these domains. You call it patient-centered, my colleagues call it user-centered, teachers call it learner-centered, but it comes down to a change in relationship between those you serve and yourself. And it can be great. Instead of seeing patients as a bag of symptoms or as a lawsuit in the making, it is important to see them as people who are ultimately responsible for their own health. That’s easy to say, but it can be hard to make real.

I have also seen all this “centeredness” turn into rampant consumerism. I have seen it turn into attempts to automate people out of jobs. I have seen it turn into deliberate diminishment of status and importance in organizations. We need to avoid that.

Dear Medical Student

Those are my lymph nodes; my eyes are up here. Look I know you are learning a lot, and I know that the vast majority of it is about, well, you know, medicine. That’s very important. It’s why I will always take the time to be poked and prodded by you folks. However, let me be as clear as possible, there is a distinct difference between a car engine and a human patient. That may seem obvious, but it is not always seen in how doctors behave. People, unlike cars, have feelings, fears, opinions, and need to be part of their treatment.

Here’s the good news and the bad news. The good news first. Good research has shown that major innovations in a field come from the field’s newest members. You have the most precious gift of fresh eyes and a new perspective on the problems of medicine. You’ve been raised in a world of greater technology and communications. You’ve been sold the idea of heroic innovators. You can make a huge difference.

Now, the bad news. There is also a fair bit of research that shows that graduate students inherit the behaviors of their mentors and advisors. In some cases, this makes sense; it worked for them and put them in a position of being mentors and advisors. However, see the part I wrote for doctors…the world is changing. I see it from the “information” perspective, but you can no doubt already see it from the medical perspective. It is not just about new treatments and therapies. It is about new organizational structures and economics. Beware when people try to get you to call folks like me customers and not patients. I am not your customer, I am your partner, and you and I are going to have to work together in new ways if I’m going to stay healthy, and if you are going to remain important.

Dear Heroic Noble Inspiring Cancer Survivor

The first line of the first pamphlet I read after my diagnosis of cancer told me I was a survivor. I didn’t have to be cured to be a survivor, I guess I just had to be breathing. This struck me as a pretty low threshold. But as you have probably already found out, there are a ton of stupid metaphors and assumptions around cancer.

Take “fighting cancer”…yeah, that’s what it feels like to lie in a bed asleep for 16 hours straight…fighting. Or, I love it when folks tell me I’m heroic. If anyone was given the choice to take drugs to extend their life wouldn’t they do it? That’s not heroic, it’s common sense. I hope, like me, you have made the brave decision to try not to die.

So what’s in here for you? I hope some comic relief. Seriously, humor has been the best medicine I have gotten – other than, you know, actual medicine (that’s Seth MacFarlane’s joke I stole). You’re going to hear a lot about the importance of a “positive attitude.” Screw that. You have cancer and could die from it. Feel free to cry, scream, piss people off, and flip the bird to God (he can take it). I do have to tell you, however, that gets very tiresome after a while. Tiresome not for everyone else, who cares, but to yourself. So why not confuse everyone and be happy…besides they all have to laugh at your jokes now.

Dear Everyone Else

What I really hope you get out of this is a chance to expect more from those who you work with in your life. Doctors, lawyers, architects, librarians, teachers, engineers, all of these folks are now working in a different world than the age of the almighty experts. The days when you sat quietly and did what some expert told you because they were an expert are gone.

The experts are still here, and expertise is still important. However, the new measure of expertise is not in how well the expert performs their craft, but in how much better that makes you perform. Architects, lawyers, doctors and such are there to make you better, to teach you, to empower you, not simply to service you like a car.

At the very least read my story and laugh – I hope. If you get inspired by it, realize that is your prerogative, but it is not the reason I got cancer.

 

Notes


 

[1] http://www.ted.com/talks/ken_robinson_says_schools_kill_creativity

[2] http://www.thedailybeast.com/articles/2014/04/14/how-being-a-doctor-became-the-most-miserable-profession.html

 

More on the book at http://rilandpub.wordpress.com/about/the-boring-patient/