The Boring Patient

- Title Page

- Introduction

- Part I: Diagnosis

- Chapter 1: Getting to Know You

- Notes

- Chapter 2: Sick and Tired in Amsterdam

- Chapter 3: Super Bowl Sunday

- Notes

- Chapter 4: Dear Bringer of Doom

- Part II: Treatment

- Chapter 5: My Cancer is Worse Than Yours

- Notes

- Chapter 6: Too Much information

- Notes

- Chapter 7: The ROC

- Chapter 8: Your Side Effects Will Vary

- Chapter 9: HemOc

- Chapter 10: Dear Doctor

- Part III: Transplant

- Chapter 11: Schrödinger's Cat

- Chapter 12: ICE ICE Baby

- Chapter 13: PET Scans and Water

- Chapter 14: Harvest

- Chapter 15: A New Birthday

- Chapter 16: Home

- Chapter 17: Dear Fellow Cancer Survivor

- Epilogue: A Cancer Free Summer

- About the Author

The Boring Patient

R. David Lankes

The Boring Patient

R. David Lankes

© 2014 R. David Lankes. All rights reserved.

For more on the book, to join the conversation, or for volume discounts visit http://www.riland.org.

This book is dedicated to the caregivers, without whom cancer would simply be unbearable. In particular, it is dedicated to my caregivers: my wife Anna Maria, my mother Bet, my on-call microbiologist Joe, and the nurses who chose everyday to face down the plague of cancer.

Acknowledgements

My editor: Nicole Dittrich

My medical fact checker: Joe DeMasi

My early readers: Katheryn Dies, Joe DeMasi, Bet Stephens, Anna Maria Lankes, Meg Backus, Mia Breitkopf, and Hugh Bonner

Liz Liddy and the entire iSchool of Syracuse who provided unbelievable support to me and my family through this journey.

Readers of my blog who didn’t know they were giving me feedback on this book.

Introduction

There are a few things you need to know before you jump into my story. The first is that I have changed the names of the doctors and nurses in my story to protect the guilty and innocent. Sorry family and friends, I used your names. Now, to be honest, this isn’t much protection. I teach librarians; I work with librarians; librarians are friends of mine. It would take a good librarian about 10 minutes to chase down most of these names and places and that’s only if they stopped for a latte first.

The book itself is broken into three sections roughly covering three phases of my treatment:

1. Diagnosis: the trip leading up to my eventual diagnosis with Hodgkin’s Lymphoma, a cancer of the blood/immune system. It was not the straightforward path you might expect (or that I hoped for).

2. Treatment: the first round of chemotherapy when I was convinced I was curing my cancer.

3. Transplant: the story of my autologous stem cell transplant with accompanying chemo for my refractory cancer (in other words, when the first round of chemo wasn’t enough).

I would love to add a section 4, the “Happily Ever After” section, but as you will learn throughout this book, cancer doesn’t ever really have an end date…just a not yet date. But I am getting ahead of myself.

The last chapter of each section is a reflection in the form of a one-sided conversation. The reflection seeks to outline what I hope folks can take away from my story.

The next thing you should know is that the book is a cross between a memoir, a textbook, and a case study. I lived through the events, and my memory is the primary source for the narrative. However, I have also used the copious treatment notes kept by my wife, my own journal, my blog posts, and medical records to fill in gaps and nail down the timing of events.

Also, for the OCD among us, I use the term “Hodgkin’s Lymphoma” over “Hodgkin Lymphoma.” I’ve seen it both ways by reputable sources, so I picked one. I suppose it may be unfair to ascribe my illness to a dead English guy, but any book about cancer is ultimately not well framed in the context of fair and unfair.

Part I: Diagnosis

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

Chapter 2: Sick and Tired in Amsterdam

It may seem odd, but in truth I’m not sure when I first knew I was sick. I first became aware something was not right while on a trip to Amsterdam in August of 2012. I was in the Netherlands to speak at the Amsterdam Public Library and Tilburg University.

Excuse me as I take a moment to clarify some misconceptions of professors. Most folks think of professors as people who teach all day. I remember sitting on the campus quad taking a break from writing one summer when a parent approached me with his child. “Excuse me sir, are you a professor here?”

“Yes I am,” I responded.

“Great, it’s summer, so you’re not doing anything and can show us around.” There was no irony in his voice.

A professor at a research university has three jobs: writer, actor, and secretary. Writer in that all of the research we do eventually ends up as an article published somewhere (mostly journals, but sometimes books or other outlets). An actor in that teaching these days is much less about lecturing and more about getting and keeping the attention of students that were raised on Sesame Street and YouTube. And secretary? It is called faculty governance, and it means that you sit in a huge number of meetings and committees discussing everything from should someone get tenure, to planning the annual holiday party.

Now my research is different from that of say a chemist or physicist. I don’t have a lab, and my field of study, library and information science, has a closely aligned group of professionals. That means that part of my job is to see how people and institutions act, while another part is trying to change those same people and intuitions to adopt better ways of working. That means add salesman to the list of my jobs as a professor.

In fact, I spent a good amount of time on the road at conferences speaking and talking with peers. I’m lucky. My area of study is library science, and there are libraries all over the world. I’ve been to Sweden, Italy, China, Austria, Australia, England, Scotland, as well as a fair number of states in the U.S. At one point when my sons were 3 and 6, I calculated that I spent 1/3 of my eldest’s life on the road. After that I cut back, but the Netherlands was still my 6th trip of 2012.

To be honest, I was not that impressed with Amsterdam. The public library was incredible, but the rest of the city was full of expatriate partiers that left the city crowded and dirty. Also, my Irritable Bowel Syndrome seemed to be acting up so I was uncomfortable. I was also wrestling with a bit of a midlife crisis. I had just published a series of books that were well received and I was not sure how to follow that up…or if I should do something different. One great aspect of being a tenured professor is you can pretty much change your job and call it a “shift in research agenda.”

By the time I got home, however, I was feeling sick, had a low-grade fever, and was just tired. As the weeks rolled on I started getting very bad headaches and started losing weight. By October I was sleeping 14 to 16 hours a day and had lost 30 pounds.

Initially my doctor diagnosed me with bronchitis and gave me some hefty antibiotics. Then he added steroids. Nothing. Chest X-Ray for pneumonia. Nothing. I was getting a bit depressed. My mid-life crisis (what am I going to do next) and body woes were not going away. My hands and jaw had also started to tremor. When I showed this to my doctor he called them “conscious tremors; the more you notice them, the more pronounced they become.” Super.

Now I have a great doctor, or as I now have to refer to him, primary care physician (when you have a ton of doctors, each needs their proper title). He refers to me these days as his “humbling patient,” because apparently I remind him how much medicine doesn't know. My condition was driving him nuts as well. He was sending me for blood tests nearly every week as we tried to figure out what was wrong with me.

Lyme disease – nope

Thyroid – nope

Anemia – nope

Meningitis – nope

Parasite – nope

Kidney disease – nope

Liver – Nope

Nope, nope, nope, nope, nope.

I was not getting better, and we couldn’t figure out why. Then one day, I forgot how to speak.

I came down from bed to watch some TV. I brought up the cable guide and couldn’t make out the words. “Odd,” I thought. So I called the doctor. Here’s how the conversation went:

“Hello, Dr. M’s office?”

“”

“Hello?”

“Words…” It was all I could say.

“Hello?”

I hung up and freaked out. I called my wife:

“Hello?”

“I…can’t…words”

“I’ll be right there.”

Now, I have to take a minute out of the story to point out just what a nerd I am. You see, while I waited for my wife to come home, I pulled out my laptop, opened up my word processor to see if this was just a verbal thing, and wrote the following:

I cannot to plan on studying. I cannot dictate how interests work on in how to I palmons on work how needs make. I cannot trash how to dictating how people busing systems.

Did I mention that I freaked out? I have no clue exactly what I was trying to write, but I think it was along the lines of, “Can I write down the words I want to say?”

It is hard to express exactly how I was feeling at this point. I was terrified, of course. As I’ve said, a HUGE part of my work was based on my ability to speak (lecture, preach, piss and moan). I have to admit, however, I was also a bit intrigued…what could be going on? But to be clear, mostly terrified.

When my wife arrived home, and saw that I couldn’t remember, or at least say, the names of our children, or put a sentence together she whisked me to the emergency room. All along the drive she tried to get me to talk. It was like a bad version of “This is Your Life” mashed up with 20 questions. “What’s my name? What’s your name? When were you born? Where do we live?” By the time we arrived at the doors to the emergency room I’m pretty sure I lost the game, but I was getting a bit better (I finally told her the names of our sons).

The next few hours were a series of monitoring my vitals, sticking my tongue out, and doing stroke tests. Touch your nose; now touch your fingers together. Look up, now right, now left. Do the hokey pokey…no, not really. My words slowly returned after about two hours.

The emergency room led to a night full of MRIs and blood tests. I was finally diagnosed with a Transient Ischemic Attack or TIA. A TIA, I was told, is a mini-stroke that leaves no physical damage. I was prescribed blood thinners, set up with an appointment with a cardiologist and sent home. At least I knew what was wrong with me.

A week before my appointment with the cardiologist, my mother, who came to town to watch me while my wife was away. I was still having bad headaches; I was still sleeping most of the day. Then my mother asked me a question. I was puzzled why, as I answered her, she looked increasingly concerned. I was getting a bit perturbed when she called up my doctor and had me talk to him. I was really upset when she called 911 and had an ambulance come and take me to the emergency room. Apparently, while I thought we were having a nice conversation, we were not having the same conversation. I was making no sense and this time I had no idea. It is terrifying when you can’t make a sentence. It is a hundred fold more so when you don’t know that you can’t make a sentence.

I was taken to an emergency room at a different hospital. This time the doctors skipped the stroke worry and I was handed to neurology that wired me up and gave me an EEG to look at my brain...and another MRI. After a few days in the hospital it was declared that I wasn’t having TIAs, I was having seizures. What’s more, blood thinners would make the problem worse. So I was put on an anti-seizure drug called Keppra and sent home. At least now I knew what was wrong with me.

Now before I jump to the next part of my story, I need to tell you something about Keppra: it’s a deal with the devil. On one hand it does indeed fend off seizures. On the other hand it transformed me into a limp dishtowel with a grumpy disposition. It felt like my brain was slowed down 20%. I hate Keppra. I hate it so much that I once threatened to check myself out of a hospital evaluating me for a potential heart attack if they made me take it again. But for the time being I took it. My kids called me “grumpy daddy.” I was not pleasant to be around.

Worse, I realized that I still didn’t really know what was wrong with me. What caused the seizures? Why did I lose 30 pounds before the seizures showed up? OK, the headaches seemed neurological, but the sleeping? All I knew was that I could speak, my headaches had ended, and I couldn’t drive a car. Not good enough, and not good enough for my primary care doctor who sent me to the Cleveland Clinic to have a look at my brain.

Wired in Cleveland

My wife drove me to Cleveland the day before I was to be admitted to the Cleveland Clinic for a weeklong observation for seizures. We visited the Rock and Roll Hall of Fame. We ate at an amazing little Italian place in Cleveland’s Little Italy. The next day we walked down to the Clinic for admission.

How to describe the Cleveland Clinic? Think of the last hospital you were at (other than the Cleveland Clinic obviously). Now throw that away because it is nothing like that. They not only have valet parking, they have a concierge staff that meets you at the door, and directs you to where you need to go. They have a massive atrium with artwork and live classical music. It is the kind of place where you’re sure you are under-dressed even when wearing a hospital supplied gown. It is the kind of place that when they look at your MRI from the Syracuse hospital (I am not making this up) the doctor makes a dismissive sneer and mumbles something about it only be a 1 Tesla machine.

I went to the Cleveland Clinic for a five day EEG test. This involved first lying face down in a bed as a technician glued 24 electrodes to my head (the technicians fought to get me because my head was nice and shaved). The electrodes were connected to a long cord that disappeared into the wall behind me. The first ponytail I’ve had in my life couldn’t be disconnected, except by a nurse when I had to go to the bathroom. There is a special kind of pressure trying to go the bathroom with a nurse waiting outside your door holding your wire bundle.

Figure 1: Wired in Cleveland Clinic for Seizure Test

For the next 5 days I lay in a bed while being watched by an infrared video camera. The doctors watched me day and night to see if there was a disturbance in the EEG (like the force) and how it physically manifested itself.

At the end of the week they declared me healthy, no epilepsy, no seizures, stop taking Keppra and go home. When I asked what had caused all my symptoms their answer was, and I quote, “We don’t have a time machine to go back and find out,” and, “There are a lot of things that can make the brain act out.” So now I had no idea what was wrong with me, if it was still wrong. If only they had looked 6 inches lower than my skull, they might have seen the cancer growing in my chest.

Chapter 3: Super Bowl Sunday

I felt better than I had for months when I got back from Cleveland. Off the Keppra my mind cleared and my energy seemed to return. With the official word that I didn’t have epilepsy I was happy. After all, nothing too serious ever happens to me, and all medical problems eventually go away right? This bliss lasted for two weeks, then the blood blisters came.

Ever bite your tongue really hard? So hard that a little bump forms on your tongue and you spend the entire day running your tongue against the roof of your mouth because it feels so weird? I woke up the morning of the Super Bowl with 5 of those sores. They didn’t hurt, but they were ugly. I was pretty sure it was something temporary, so I ignored them. The next day they were bigger. What’s more, my feet looked like they were starting to rust.

It may seem odd to you that having blisters on your tongue and rusting feet would not freak me out. But recall my medical history – all I got was annoying but non-threatening ailments, and this had nothing to do with my brain. Surely this was another annoying, but benign condition. My primary care physician had put me on iron pills to treat anemia (low red blood cell count). Surely, this was just some side effect.

I’d just like to take a minute to address the doctors and med students reading this. Weight loss, fatigue, petechia (the rusting look of the feet), anemia, mouth sores? “Hello, classic lymphoma presentation. You must have had some crappy doctors.” Except for a few things. Remember that up to this point I was presenting with neurological symptoms (seizures, TIA) – not a classic lymphoma. Physical exams weren’t finding huge lymph nodes. And here’s the most important part…I wasn’t being seen by oncologists or hematologists.

What has become painfully obvious to me, is that once you are directed to a given medical specialty, your problem instantly becomes one that that specialty handles. On my first trip to the ER, they thought stroke, so I was handed over to cardiology. What does a cardiologist look for? Strokes. Can’t find one? No problem, must have been a TIA that leaves no evidence. Second ER visit? Handed off to the neurologist. Can’t talk? Looks like a seizure, sounds like a seizure, must be a seizure.

Too many hospitals have become like the three blind men and the elephant. One blind man grabs the elephant by the tail and says, “It is a snake.” The other grabs the leg of the elephant and says, “It’s a pillar.” The third blind man grabs the elephant by the ear and declares, “It is a fan.” Depending on the version of the story you read the elephant then either stomps on all the men, or some wise person sees the entire elephant, and makes fun of the disabled for their limitations (it is not a very politically correct story). The point is extreme specialization has advanced doctors’ abilities to understand and treat disease, but it has come at the expense of a sort of professional myopia.

This is not limited to doctors. Academics have found the same trap. The more specialized they are, the more rewarded they are by that specialized field, and the less able they are to work across scholarly boundaries. There is this sort of unspoken rule in academia: divide pond until biggest fish within you are (best if spoken in Yoda voice). So I’m not just an information scientist, I’m a library and information scientist. I don’t just study libraries, I study reference librarians, not just reference librarians, but digital reference librarians that answer astronomy questions on Tuesdays…you get the point.

Back to my story. On the third day when the blisters in my mouth started growing on the inside of my cheek my wife made me call the doctor. He looked at the blisters and feet and said it might be the iron pills he had prescribed and ordered yet another blood test. So off I went to get my blood drawn…again.

The next day I was sitting having my car serviced when I got a phone call from my wife. “Dr. M has been trying to get you all morning. He says your platelets are very low and you have to go to the emergency room now.”

My wife picked me up, and took me to the hospital (the same hospital where they first diagnosed me with seizures). They did a standard blood test (a CBC, or complete blood count) and found I had a platelet count of 4.

Please let me take a moment for a little hematology lesson. While there are a bunch of different cells floating around in your blood stream, the three basic types are:

- Red blood cells: these carry oxygen around the body and get rid of waste materials.

- White blood cells: these are a series of different cells that fight infection and repair the body; and

- Platelets: these cells help repair blood vessels and stop bleeding.

Now each of these cells have a normal range (a count of how many cells they find in a sample of your blood…hence the “count” of “complete blood count”). Normal white count is between 4 and 10, Red count is 4.6 and 6.1. Platelets are 150-400. I had a platelet count of 4. This is not good.

The reason I was getting mouth sores was the same reason my feet were “rusting.” Small hole were forming in my blood vessels (this happens all the time) and small amounts of blood were leaking into the skin. Normally platelets plug up these holes, but I didn’t have enough, so the blood kept leaking and formed blisters and petechiae (red splotches under the skin).Why the feet? You put a lot of stress on feet by walking. Why the mouth? Lots of blood vessels with thin cell walls there.

Now this might at first sound more annoying than dangerous so why the urgency to get to the emergency room? As the ER attending doctor put it “I could give you a hard ping to your head, and you might die of internal bleeding in your brain.” He had my attention.

So here I was again in the ER waiting for the next crazy diagnosis. I was not disappointed. “Mr. Lankes, we believe you have ITP.” Wait for it. “Idiopathic thrombocytopenic purpura.” Did I mention I took Latin in high school? No? Well I did…I failed the course miserably, but I did get enough out of it to know what “idiopathic” meant. From the Oxford English Dictionary:

“relating to or denoting any disease or condition that arises spontaneously or for which the cause is unknown.”

And so I laughed. “So, in English, I have low platelets,” thrombocyte means platelets…I did have to ask that, “and you don’t know why.” I don’t think the doctor appreciated that. It turns out a lot of folks have ITP, and there is a simple treatment: steroids. High dose steroids and the platelet numbers bounce back.

So, because my platelets were dangerously low they admitted me to the hospital and started pumping me with steroids. And my platelets went down further. This is not good. They got down to 2, and the doctors started getting worried and looking for some other cause. They upped the steroids – nothing. They suspected that my immune system was killing the platelets for some reason so they gave me Intravenous immunoglobulin (IVIG). This is a cocktail of immune components of hundreds of blood donors pooled together. The idea is to confuse my immune system long enough to let my platelets recover. Nope.

To drive the point home to me on how dangerous this was I need to jump ahead a few weeks towards the end of my hospital stay. One afternoon as I was talking to my wife I felt an odd bulge on my hip. I pointed this out to the nurse, and she looked. As she was watching my hip…well my butt really…the bulge got bigger. She took out a magic marker and tried to draw a circle around the bulge, but it kept growing and growing. For the next week every time I saw a nurse or doctor, I had to turn around and drop my drawers so they could check my lumpy butt. My brother-in-law who teaches biology to pre-med and pharmacy students, asked me for pictures he could show his class because they were discussing the lymph system. I respectfully refused letting him show pictures of my inflated butt to undergraduates.

Now I try to see the humor in ending up with a huge purple bulge that ran from my butt down my thigh, but, it was a spontaneous internal bleed. Had it happened in my head or heart, I would be dead. How did the bleed start? Did I bump something too hard? Did I sit down to quickly? No idea. Now back to the story.

At this point I need to introduce another character in our unfolding story: Dr. S. Dr. S to me was a like a mix of Dr. House from the TV show “House” and The Shadow. He was clearly brilliant and always seemed to show up in my hospital room at 2 a.m. alone. While all my other doctors were trying to figure out why my counts weren’t going up, Dr. S was looking back through my medical records. He found this one small entry when I was admitted for my speech problems about an enlarged lymph node in my neck that couldn’t be biopsied because it seemed to disappear on its own. Dr. S found it again and the team decided it needed to be biopsied and a CAT scan was in order.

Here’s how I first learned I may have cancer. As the ITP treatments did nothing, the doctors began to suspect some form of blood cancer, and probably some form of lymphoma. In the CAT scan my lymph nodes throughout my chest and abdomen were enlarged, my spleen was enlarged and both my spleen and my liver looked to have spots on them. A lymph node biopsy and bone marrow biopsy were scheduled. It was late on a Thursday afternoon when an oncology fellow (read advanced med student that my wife and I would come to refer to as the Bringer of Doom) told me that I probably had cancer. I remember it distinctly. My wife was in the room and we both went white as ghosts. All I could think about was “I’m going to die.”

Without any time to let that sink in, Bringer of Doom also informed they had to do a bone marrow biopsy right away as the lab was about to close. Within minutes of being told I had cancer my wife was whisked out of my room, I was lying face down on my hospital bed and the Bringer of Doom was kneeling on my back poking me with needles.

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.”

For the doctors and med students reading this, let me be very clear. You do not simply say it is probably cancer, and then move on. You do not separate spouses within minutes of such a diagnosis. You do not put figuring out the diagnostic puzzle before being human. The lab results could have waited; at least waited a day for the lymph node biopsy to be done. You are treating a human being, a human being that needs comfort, direction, and assurance. I apologize if I still sound pissed off, but this still pisses me off.

The nurses knew what was going on, because they are always there after the procedure, and have to help pick up the pieces. That may be part of their job, but humanity is part of yours. Taking time, listening, assuring your patient is mentally ready for the next steps is not a challenge to your skills, or a questioning of your work, it is a means of connecting to a patient, and that connection is essential to involving the patient in their own treatment; and that is the future of health care. Call it patient-centered, call it caring, I don’t care. It is important – more important than the timing of a damn bone marrow biopsy.

Let me contrast this to how a diagnosis is delivered one floor above my hospital room in the Children’s Hospital. The patient is there, and the parents are there and the doctor is there. After the diagnosis is delivered the doctor brings a nurse, and a librarian up to speed on the diagnosis and potential treatments. As the doctor is reviewing the diagnosis the librarian is writing down the terms used: “Hodgkin’s Disease,” “Lymphoma,” etc. After the diagnosis is delivered and initial questions answered the librarian goes back to the Family Resources Center and uses her iPad to do Google Searches on the keywords. The iPad has a unique IP number so the search engine doesn’t filter the results for a hospital. The librarian reviews the top 10 hits for each keyword. She then sits down with the parents and goes through each of the results letting them know what are ads, what are reliable, and why other sites should be avoided.

Why does she do this? What’s the first thing I did after I heard lymphoma? Google every keyword I could think of. Now I’m a trained information scientist (raise nose in arrogant fashion here), but I was still reading everything from definitions to how juicing machines and burning sage would save me. By the way, the children’s librarian doesn’t stop at Google searches. She brings paired books to the family – picture books for the kids (depending on their age), and more in-depth guides for the adults (and, by the way, an Xbox for the kid as something to do while stuck in the hospital).

My point in all of this is that we can do better in health care, and not just by expecting doctors to do this all on their own. We can be more human, but we must acknowledge that the conversation on conditions does not stop when a doctor leaves a room. It will happen on the Internet. It will happen with friends and family. If the doctors are not aware or do not care about these conversations, they are abdicating a huge percentage of how patients come to understand their health and what they need to do.

The good news was that the bone marrow biopsy came back clean, but now they needed a swollen lymph node. There are two ways to biopsy a lymph node. The first is called a needle biopsy because, as you might guess, you use a needle to get into the lymph node and grab some tissue. Needle biopsies are easy, relatively painless, and don’t lead to bleeding.

The problem is that you can’t grab much tissue with a needle. If you really want to know what is going on inside a lymph node, you need to surgically remove the whole node. Since the team was seriously considering the possibility of lymphoma, they wanted the whole thing. Only one problem, cutting open someone with platelets as low as 2 is just asking for death by internal hemorrhage. So the first thing my hematological team had to do was convince a surgeon to do it.

Surgeons Cut, Anaesthesiologists Worry

There is nothing more reassuring to a patient than watching and waiting for internal hospital squabbles. The hematology team (by this time the hematology/oncology team) had to convince surgery to cut me open. This took two days. Together the hematologists and the surgeons came up with a plan. Pump me full of platelets through transfusion, ship me to surgery and hope for the best.

A little more hematology for you. I mentioned the three basic types of blood cells: reds, whites, and platelets. Turns out each of them have radically different life spans. Red blood cells can live for weeks before they need to be replaced by your bone marrow. Whites live days. Platelets live hours. So a transfusion of platelets might raise your levels, but only for hours.

Despite the risks the surgeons agreed to do it, and I was rolled down to surgery. Turns out the surgeons can agree to all the cutting they want, but the final word really comes from the anesthesiologist. It is the anesthesiologist who puts you to sleep and ultimately has to wake you up. They tend to be more cautious. So even though I was now sitting in surgery I had to wait for an anesthesiologist to agree to the platelet plan and get my consent.

Let me paint for you the scene. I am lying on a gurney in a hospital gown and a hair net. A team of four surgeons walk up to me and say “OK, so we are going to make a cut here, right above the collar bone, and go in and grab that lymph node. There is some risk because you have a lot of nerves there, so potentially we could knick one of those and you might lose feeling in your arm…OK? Great.” Now read that quote again, but this time make sure to ignore any punctuation and don’t take a breath.

There is a great line that goes “Surgeons prefer to talk to their patients after the anesthesia has been administered.” This has certainly been my experience. It may have also struck my surgeon, because a few days later he came to visit me in my hospital room. “I didn’t realize that you and I are neighbors. I live right around the corner from you. Here is my card and my personal phone number if you have any problems. I’m glad the procedure went very well.” It was a very nice encounter…I only wish all doctors treated their patients like neighbors.

Still, the surgeons were in. Next up, the anesthesiologist. He sat next to me with a bundle of consent forms. “We’re going to start by giving you a shot to relax you. Then I will be administering gas via mask. Now, if you start to bleed out, I will put a tube down your throat to ensure you can breathe. You see if you begin to bleed internally it will swell the neck and the blood will eventually cut off your trachea. I just want you to know this in case you wake up on a ventilator…sign here.” This conversation was not fast, by the way. The anesthesiologist took a fair amount of time on this. All I could think was, “Could you just throw an ‘in the unlikely case that’ into the conversation?”

I took the shot, breathed the gas and did not wake up in the intensive care unit.

What I did wake up to was a bit of a nightmare/farce. You will note that this juxtaposition of things being amazingly frightening and amazingly humorous is an ongoing theme in my story (if anyone decides to make a movie of my experience I hope it would be Terry Gilliam and I’d like the part of the Bringer of Doom to be played by Eric Idle in drag). Pathologists could now look at my lymph node and tell me what was wrong with me. Except of course, they couldn’t. Normally, if you have cancer of just about any type, 24 hours is plenty of time to identify it. My biopsy? First since the surgery was late on a Friday I had to wait for the lab to open on Monday to do the pathology. Then, as it turns out, my biopsy was “challenging.”

The pathologist took a look. He sent it to the hematopathologist for a second opinion. The hematopathologist sent it to the National Institutes of Health for a third opinion.

Now, take a moment and put yourself in my shoes. You have now been in the hospital for ten days. The doctors have told you that you might have cancer and even put you through a somewhat risky surgery. Your platelets are still dangerously low (like risk for a bleed out in your brain dangerously low). And the doctors are telling you they still can’t tell me for sure what I have. So what the hell was taking so long with my biopsy?

It turns out my lymph nodes are weird (go figure). They are full of granulomas. Granulomas are, as best I can tell, what happens when your immune system gets confused. Normally white blood cells find an invading pathogen and literally eat it. If the white blood cell doesn’t know exactly how to deal with the pathogen, they wrap it up into a sort of sealed bundle, and ship it off to the lymph nodes. My lymph nodes were full of the suckers.

Now here’s the important part. It turns out that the presence of granulomas means absolutely nothing. Seriously, not indicative of anything and not harmful. However, pathologists get really worked up about them in large numbers because

1. A large number is very rare, and

2. A large number can make it hard to see other things in the lymph node, like say lymphoma.

With Hodgkin’s Lymphoma, however, all you need to see is one special type of cell, called a Reed–Sternberg cell, and the gig is up. You win, you have Hodgkin’s Lymphoma. Guess who won?

Thomas Hodgkin and His Damn Disease

In 1832 Thomas Hodgkin wrote a real page tuner entitled On Some Morbid Appearances of the Absorbent Glands and Spleen. In it Tom, as I call him, described a disease where the spleen and lymph nodes grew abnormally large, and eventually into other tissues killing the patient. Later, Hodgkin’s disease would be classified as a cancer of the lymphatic system (don’t worry, we’ll get there) and be renamed Hodgkin’s Lymphoma. It is related to other blood cancers like leukemia.

If you are ever diagnosed with Hodgkin’s Lymphoma, or really any kind of cancer, you will be inundated with information on what it is, how it works, what kind of cells are involved, and so on. I’m going to give you a few paragraphs, and you only need to read those if you don’t have a better source. These are from the National Institutes of Health.[3]

The Lymphatic System: The tissues and organs that produce, store, and carry white blood cells that fight infections and other diseases. This system includes the bone marrow, spleen, thymus, lymph nodes, and lymphatic vessels (a network of thin tubes that carry lymph and white blood cells). Lymphatic vessels branch, like blood vessels, into all the tissues of the body.

Got it? So lymphoma is a cancer of the immune system. And Hodgkin’s Lymphoma?

Hodgkin lymphoma starts in the lymph system, usually in a lymph node. The disease may be found because of a swollen lymph node in the neck, chest, or other areas.

The disease begins when a lymphocyte (almost always a B cell) becomes abnormal. The abnormal cell divides to make copies of itself. The copies keep dividing, making more abnormal cells that build up.

When white blood cells collect around the abnormal cells, the lymph node that contains abnormal cells becomes swollen. Abnormal cells may spread through the lymph vessels or blood vessels to other parts of the body.

Although normal cells die when they get old or damaged, abnormal cells don’t die. Also unlike normal cells, abnormal cells can’t help the body fight infections.

Got it? So those wonderful white blood cells that are supposed to kill disease mutate and start dividing like crazy.

I would like you to note two things about this information provided to you by your government. The first is that unlike most cancers, lymphoma doesn’t make tumors per se. It is really in the entire blood stream. Other cancers like breast cancer make masses. If breast cancer gets very bad it will spread to other organs and in doing so, they will leave evidence in your lymph nodes and that is very bad. Lymphoma, on the other hand, starts with the lymph nodes. So finding diseased lymph nodes does not mean the cancer is necessarily in the advanced stage.

The second thing I’d like you to notice is how benign the NIH’s write up makes Hodgkin’s seem. It reads like, oh you might have some swollen lymph nodes and these cells won’t be able to fight disease. Ah, poor cells. What it should say is, these cells can make your lymph nodes grow so large they will pop out of your neck and squeeze your heart until you die…or your lungs until you die, or spread to other organs causing cancer of the liver and such….and then you die. I mean seriously, do an image search for lymphoma, but only if you have a strong stomach.

Now those paragraphs I just wrote were not available when I got the final word on my diagnosis. I got a doctor who I had never seen before coming into my room at 9 o’clock at night sitting down next to my bed. “I’m Dr. P, the head of the oncology department. We got the final word on your biopsy and you have Hodgkin’s Lymphoma. We believe it is causing your low platelet count, enlarged lymph nodes, and enlarged spleen. The standard treatment for this is a chemotherapy called ABVD, and we’d like to start in the morning. The nurse will get you some information on lymphoma and the chemo. Do you have any questions?”

Now to be fair, that interchange was not as curt as I present it and the head of oncology did take the time to work with me. Dr. P answered my questions and was very professional:

How advanced was it?

From a CAT scan it appeared to be widely distributed throughout my chest and abdomen and possibly had started to grow on my liver and spleen. That meant it was advanced and aggressive. However, it had not affected the bone marrow and that is good.

Aggressive?

Lymphoma can be aggressive or slow growing. Aggressive is actually easier to treat.

What were my chances?

Hodgkin’s Lymphoma is very treatable, with 90% of people being cured through treatment. I was young as cancer goes, so I had very good chances. Given the distribution, and the possible involvement of the liver, I had about a 60-70% chance of a cure.

Would I lose my hair? I think I asked that because one was supposed to be worried about such things.

Actually you don’t lose you hair, it just becomes brittle and breaks off at the skin. Will you lose yours? Don’t know. Everyone is different.

Then I was left alone. My wife was at home, and I now had to call her and let her know.

I love my wife. I met her the very first night of college. I remember seeing her for the first time. She was saying goodbye to her parents in the lobby of our dorm, and she was the most beautiful woman I had ever seen. I remember her long hair. And her Italian complexion to a born and bred Midwesterner seemed exotic. I pursued her for weeks until she agreed to go out with me. She is the most amazing wife and woman. She is a fabulous mother to our two children. All that I have accomplished is because of the solid loving foundation she has provided.

That night I cried not because I had cancer, but because I had to tell her I had cancer. I don’t remember what I said or anything about the conversation, but thinking back on it I need to take a break from writing and be by myself for a bit. I am sure, however, I told her at least now we know what it is.

Notes

Chapter 4: Dear Bringer of Doom

A quick story to start off our conversation. While I was lying in bed during my weeklong seizure study in Cleveland a doctor came into my room and introduced himself. He said, “The Cleveland Clinic has a partnership with the medical school at Case Western Reserve University. We bring medical students into the hospital, and with the permission of the patients, we let them get real experience on real people. Would you mind helping out?”

“Sure.”

So, three hours later, 5 second-year medical students come into my room. It turns out that the day’s lesson was in using the ophthalmoscope. As you know an ophthalmoscope is that handheld tool with a light on the end of it that you use to look into eyes. You know, the one where the doctor gets like 2 inches from your face? For the next 40 minutes I had students with trembling hands hovering a lighted scope millimeters from my eye as they strained to identify the major parts of the inner eye.

Now, why did I say yes? Because I’m a doctor. Not that kind of doctor: I have a Ph.D. Did you know the word “doctor” comes from the Latin for teacher. Of course, I don’t blame you if you didn’t realize I had a doctorate. In the past two years I have been in four different hospitals, a dedicated oncology practice, numerous imaging practices, and two surgical offices and I have never once been referred to as Doctor Lankes. I point this out not out of a bruised ego, but rather to highlight a culture of exception you are in. I’m sure a big part of being “Mr. Lankes” is just to avoid confusion. I get that. (“The doctor is going to doctor the paperwork so he can save the doctor some time”). However, a better explanation may be that with few exceptions, doctors have not actually asked what it is I do for a living.

Since we’re on the topic, while technically my name is Richard, I go by David. If I am not referred to as Mr. Lankes, it is normally Richard, Rick, or Rich. My full name is Richard David Lankes. My Grandfather was Richard George Lankes, Senior. My father was Richard George Lankes, Junior, who went by Dick Lankes. My parents didn’t want a Richard George Lankes the Third, so I was named Richard David Lankes. They called me David (as my father tells it, he wanted to always make sure he was always the biggest Dick in the house). I tried once, in kindergarten, to go by Richard, but when it was time for milk and cookies, and the teacher called out, “Richard….Richard,” and I missed my snack. It was David from then on.

That is until I was in grad school and I got a call from my health insurance company. They were tired of getting forms with R. David, or just David, or sometimes Richard D. so they told me “From now on, if you want to stay healthy you are just Richard!” So I’m not surprised that doctors call me Richard…that’s what it says right on the form. What does surprise me is that doctors who I see every day for 22 days in the hospital still call me Richard.

Speaking of names, do you know why you earned the nickname Bringer of Doom? It’s not because you were the bearer of bad news. I’ve gotten a lot of bad news from folks in this process that did not get a nickname. The nickname came because you didn’t seem to know it was bad news. Your actions, your demeanor, were clearly focused on your new experience, and me as a puzzle. Now this is something I understand. As a researcher, problems are interesting. Identifying the solution to a problem, or at least that there is a solution to the problem, is a fantastic feeling. It is a joyful feeling. Telling someone they have cancer, however, is not a joyful experience (“Good news Bob it looks like it’s cancer!” “Oh boy doc, thanks. I always wanted to lose some weight, and some hair, and mobility, and my ability to stay awake for more than 5 hours straight, and…”)

Your patient is a person. They have a name, they have skills, they have a perspective on the world. This perspective will influence how they treat you, and how they treat themselves. Very simple steps can be used to build a relationship. Being a competent doctor with the knowledge and skills to diagnose problems and identify appropriate treatments is your first and foremost responsibility. However, you must understand that you cannot treat any condition without the patient as a partner. Patients lie, and patients hide embarrassing things. But here’s the most important thing…no one is just a patient. They are fathers, and professors, and neighbors, and if you treat them as such they are more likely to respond and be open. Respect and credibility are earned far beyond the conferring of a degree or title, and will be much more forthcoming if you take the time and effort to know me beyond my wounds and disorders.

So what do I want you to take this from this chapter? Being a good doctor means being concerned with my life, not what might end it.

Part II: Treatment

Chapter 5: My Cancer is Worse Than Yours

My brother-in-law, Joe, had thyroid cancer as a child. We jokingly tried to determine whose cancer was worse. "I have an oncologist, you just had a hormone doctor.”

"Oohhh, an enlarged spleen! The thyroid determines how you grow and eat.”

“I have to get chemo.”

“They had to slice me from ear to ear…and I lived!”

You sometimes get the sense that just as Joe and I wrestled to see who was either tougher, or at least more deserving of sympathy, there is also a competition amongst the cancers themselves (or at least their foundations). Let's face it, if you think ribbons against cancer, you think pink. Damn breast cancer. Hodgkin’s is left with lavender. Not purple mind you, lavender.

Still, that’s better than poor lung cancer that always struggles to find enough research funding. It seems people are too willing to blame the victim of lung cancer. After all, smokers do this to themselves, right? Never mind that 10% of lung cancer patients have never smoked…oh, and lung cancer accounts for more deaths than “the next three most common cancers combined (colon, breast and pancreatic).”[4]

Still with over 13 million people diagnosed with cancer in this country,[5] you probably have developed a sort of informal cancer tragedy/near miss list. I know this because it is often shared with me when folks find out I have the cancer.

"Oh yeah, my dad had cancer and he's still around 10 years later."

“I had a friend with that…oh wait, no, it was lung cancer. He died.” (A real quote.)

At the time I was in the hospital awaiting diagnosis and treatment I was still working. I taught an undergraduate class in information reporting and presentation. The nurses set me up in a family lounge, and twice a week I would teach the class via Skype: the virtual professor. A number of those students emailed me to tell me their stories of encounters with cancer. Frankly, I think it was the only reason I got good evaluations that semester.

I have a list too. My grandmother died of leukemia. Other grandmother died of colon cancer. My brother-in-law had his wimpy thyroid cancer (love you Joe). My mother survived breast cancer. My son’s best friend’s mother died of colon cancer. Graduate mentor died of prostate cancer. Two colleagues doing well years after breast cancer. Neighbor with terminal breast cancer. Still at the top of that list was Joanne.

Joanne died of advanced breast cancer, but not after some damn good and productive years. Joanne was probably one of my closest friends and colleagues. We did research together, we wrote together, we snuck out of work and went to a movie or two together (though her husband Paul was my real partner in seeing movies…normally violent or very bad science fiction movies).

Figure 2: Me, Joanne, Mary, Paul, and Ian

I remember lunches with her where she would talk about being tired and other side effects in between office gossip and empire planning. I remember one lunch where she tried to emphasize to me just how precarious her health was. “David, you have to understand that I may die.”

“I understand that Joanne, but I don’t know how to deal with you dead, so I’m going to talk to you like you’re alive.” Pithy, and in retrospect, way too dismissive.

Joanne went through years of chemo. The goal, as she put it, was to keep her going long enough to come up with the next medical breakthrough. People throughout my process have remarked on my positive attitude and humor. I credit it all to my dear friend Joanne. And my dear Joanne was top of my mind on the first day of chemotherapy.

The Black Shroud

Since I am writing this from the perspective of a patient, and not a doctor, I won’t describe chemotherapy in medical terms. Instead I’ll describe it as I saw it as a patient: AAAAHHHHHHH!!!!!!

After my meeting with Dr. P. the night before, the nurses had indeed brought me a pile of literature on chemo and the chemicals (toxins) that were about to be pumped into my body. Add to that feverish Internet searching and I was ready for everything from losing my hair, to throwing up on a regular basis, to skin sores, to, of course, sudden death. It did not help that the bags of chemo they hung for me on that first day of my treatment were covered with black shrouds (the shrouds protect light sensitive chemicals…but it had a distinctly different impact on me).

So here’s how chemo starts. The nurse comes into my room and puts on a gown. Then she put on gloves. Then she put a big sign on your door that reads “chemo precautions.” Then she hangs the chemicals on a pump and programs the dosage. Then she brings in another nurse to check everything. Then she starts pumping the chemicals into you. I had no special gown. I had no gloves. And as for precautions…well, it was going right into my veins.

Normally this might be through an IV, but I had a PICC line installed. A PICC is a peripherally inserted central catheter. It is a tube that is inserted into a vein in your arm (near the bicep) up into your shoulder and finally ends in a major vein right next to your heart. It sounds scary, but it turns out to make life much easier. Rather than poking you with needles, they simply attach to your PICC line. It does, however, take a little while to get used to having tubes hanging out of your arm.

With the chemo running into my PICC I waited. I don’t know what I was waiting for, but I was sure it was going to be bad. Then I started to shiver. My wife draped a blanket on me. I still shivered. My wife called for the nurse. A nursing student came in and they both started to drape me in blankets until I stopped shivering. I looked like a cocooned caterpillar. A cocooned caterpillar wired to a black shrouded bag of toxins. My mother looked concerned.

The Family

Once my medical team suspected cancer my wife called my mother to tell her the news. My mother, who lives in Ohio, was in a car in Tennessee on her way to Florida when she got the call. She found the closest airport and flew to Syracuse the next day to be with me and help out at home.

It took me a few days to truly understand the depth of my mother’s concern. Somehow in my 40s I had forgotten that I was still her son. If my son was diagnosed with cancer you better believe I would be in that hospital room. My mom was there for the first chemo, and she was there when we had to tell my two sons what was going on. In a way my father was there too, even though he had died over 15 years ago at just 55 years old.

I was at my father’s bedside when he died. He had gone to the hospital complaining of abdominal pain. He had a gallstone (thanks genetics). Normally, as I have said, this is painful, but not dangerous. Your liver makes bile, a soup to help you digest fats, and stores it in the gallbladder, which spits it into your small intestines via the bile duct when you eat. A gallstone is when some of this soup hardens sitting around in the gallbladder. If that “stone” finds its way to the bile duct and gets stuck? Ouch!

In a small part of the population the bile duct joins up with something called the pancreatic duct before it joins the intestines. The pancreatic duct delivers digestive juices (technical term) into the small intestines. The problem is if a gallstone stops up a joint duct like this, particularly just after you have eaten: not only do you get the pain of a backed-up gallbladder, the pancreatic juices also back up into the pancreas, causing acute pancreatitis. There is no elegant way to put this: the pancreas begins to digest itself. If this can’t be controlled, these juices begin leaking out of the pancreas and this leads to organ failure. My father was part of that unlucky population.

I was 28 when this happened. I still think about my father every day. By the time I got home to be with him the doctors had put my father into an induced coma for the pain. He never woke up. He died surrounded by my mother and me and some friends. As we told stories and laughed celebrating his life his vital functions slowed. At the moment his heart stopped a doctor and nurse rushed into the room to revive him. However, he wanted no “heroic measures,” and his doctors had made it very clear that they had done everything that could be done and there was no chance for recovery. So my mother, with a strength I cannot fathom, stayed the hands of the doctor.

I would note, however, that his heart, an organ that he had struggled with (a quadruple bypass, multiple stents, and endless battles over smoking and a bad diet) was the last thing to go. “Listen son, I could get hit by a bus tomorrow,” he would say as he downed a fried baloney sandwich. After his bypass he had me bring Kentucky Fried Chicken to his hospital room. I believe it was my father’s final “screw you” to the doctors that the heart went last. He was a man with a great sense of humor so I wouldn’t put it past him.

My father’s death made me (and still makes me) think a lot about my kids and being left fatherless. I have two sons that my dad never got to meet. Riley was 12 when I was diagnosed. Andrew was 9.

There was not much debate between my wife and me when it came to informing the kids. Be open and honest and ready to answer all their questions. I don’t think the idea of hiding my condition from my kids ever really occurred to us. Yet, I have had several folks tell me about having a parent die of cancer, and never being told what was going on. They told me they are still dealing with that as an adult. We didn’t want that.

For Andrew the talk was relatively easy. Daddy is sick. He has cancer. He will be tired and probably lose his hair. Andrew didn’t really have a grasp on death and such, so to him, it was just some more information. “Can I get ice cream now?”

Riley’s talk was tougher. There are way too many ways in which my eldest son is like me. One way that was evident during this conversation was using humor to mask our emotions and/or break the stress. With every bit of information he made a joke while clearly tearing up. Finally, at the end he said, “Yeah, but it’s not like you’re going to die.”

“Actually son, yes, I could die.” May you never have to say those words to your child.

The only thing that saved me from breaking down at that point was having my wife and mom in the room. “But grandma had cancer, and she’s fine. Uncle Joe had cancer, and he’s fine.” Never mind that he remembered Joanne who had died from cancer, and his good friend’s mother. Riley is smart. Riley knew the possibilities. Later, however, Riley would also be the first to make jokes about my lack of eyebrows and hair. All of Riley is smart, including his ass.

It’s Randomness That Gets You

That first chemo did its trick though. My platelets started coming back. 2 turned into 10 turned into 20 turned into 38 and 10 days after I started chemo, and 22 days after being admitted to the hospital, I was sent home. Now most folks would think going home would be a blessing and the best feeling in the world. However, as I stepped off the ward my heart was pounding, and I was terrified. No 24-hour nursing care. No instant access to doctors. I felt vulnerable. I was going home. I had cancer…what’s next?

Well it turns out what’s next was getting a stomach bug the kids had brought home. I woke at around 5 a.m. and, hmmmm, how to put this… I woke up and my previous day’s nutrition sought a rapid exit through every available option. By 1 p.m. that day I had a fever and this led to my first call to the emergency phone number I was given upon discharge. In what I would find out was the normal procedure with cancer patients with a fever, they told me to go to the ER.

By the time I got to the ER I was very sweaty and had no energy. My heart rate was 160 beats per minute (in case you care, the normal range according to the Mayo Clinic is between 60 to 100 beats per minute^6). The doctors were worried about my heart so first up was an EKG. Good news, my rhythm was normal. So, if I was having a heart attack at least it was an orderly one. With fluids my heart rate came down to 140. This is where it gets fun.

They needed to rule out a heart attack, and it turns out there is a cool way of doing it. They stop your heart. OK, that is a bit extreme. They keep you hooked up to the EKG and inject you with adenosine. Once again I am not a physician, so this may not be technically correct, but it makes the heart calm way way down for a second. It is not a pleasant feeling. In any case, this momentary lapse can tell the ER folks if I have any blockages or other heart problems. Good news…no heart problems. So they gave me IV fluids. Perhaps I was dehydrated (a radical theory given my 5 am purge of every fluid in my body). They decided to keep me overnight and let me go home the next day.

I spent most of that night in the hospital worrying I was going to die of a stomach bug and that my kids would blame themselves. That’s the thing I learned with cancer in general, and chemo in particular: it’s not the treatment that screws with your mind, it’s the random stuff that comes up; the stomach bug, the unexpected blood count. When you eventually get into the groove with treatment you learn to deal with the pains and side effects (more on that after the next chapter). You almost feel invulnerable. “I’m in treatment…cancer can’t kill you while you’re in treatment.” Then you get a stomach bug and spike a fever and you’re sure you’re a goner.

And here’s the thing, no amount of information can convince you otherwise.

Notes

Chapter 6: Too Much information

So by this point I hear you saying "OK Dave I get it. You don't like chemo. Who does? Why not take a different treatment path?” Good point. Let’s take a look at those. All of these “treatments” were found doing a Google search for “cure for Hodgkin’s Lymphoma.”

“Making dietary changes such as eliminating sugar from the diet as sugar feeds cancer and eating whole foods slows and can even reverse the progression of cancer. Likewise, taking probiotics or eating fermented food such as kefir and sauerkraut eliminates toxins in the body and boosts the immune system, which also cleanses the lymphatic system.”[7]

OK, sauerkraut salvation. Or,

“A new study published in the journal PLoS One as well as the National Institute of Health has found that cannabis may serve as a treatment for Hodgkin lymphoma…”[8]

Can I just tell you the number of people (whom I will not identify at this juncture) offered me pot throughout this? I mean, a lot. Like 20. Now I’m not taking a firm stand on legalizing marijuana, but it’s not for me. Besides, as we’ll get into later, there are plenty of prescriptions that do the job (one of which is more or less legalized heroin). Still, even these folks were offering me pot for the side effects, not as a cure.

“What helped me was prayer and intent and healing stones and dream healing.”[9]

I get the prayer thing. Throughout treatment my key ring was chocked full of saints from my mother-in-law, I kept warm under a prayer shawl from my mother’s church, a colleague nearly set Europe on fire lighting candles for me, and I’m pretty sure my wife has me sleeping on some sort of prayer cloth hidden under the mattress. However healing stones and dream healing? Next.

“Sweating is powerful way to cleanse your body from accumulated toxins. examples:

- exercise with a lot of clothes

- Sauna

- drink warm tea in a hot room ...

- eat CAYENNE pepper! ...

It is known that some modern industrial toxins and pesticides can leave your body only through sweat glands!”[10]

Imagine that. Here I was putting toxins into my body when I should be sweating them out. By the way I always do the treadmill in a three-piece suit now while eating Taco Bell.

I could keep going here, but I think this is a great point to talk about a subject near and dear to my heart: information. Let me tell you when you are diagnosed with cancer there is no shortage of information.

Here’s just a quick sample of all of the documents I received after being diagnosed:

- Hodgkin’s Lymphoma packet from The Leukemia & Lymphoma Society

- Medical treatment organizer from American Cancer Society (who are apparently the official sponsor of birthdays)

- Nutrition for the person with cancer treatment from the America Cancer Society

- Sexuality and cancer: For the man who has cancer, and his partner (with illustrations…very detailed illustrations…like, I felt like hiding it under my bed from my mother kind of illustrations) from the American Cancer Society

- Understanding chemotherapy: a guide for patients and families from the American Cancer Society

- Medical treatment organizer from the BAG IT! Foundation

- Eating Hints from the National Cancer Institute

- Thinking about complementary & alternative medicine from the National Cancer Institute

- Chemotherapy and you from the National Cancer Institute

- Facing Forward: life after cancer treatment from the National Cancer Institute

- Taking part in cancer treatment research studies from the National Cancer Institute

- Taking time: support people with cancer from the National Cancer Institute

- Support for caregivers: when someone you love is being treated for cancer from the National Cancer Institute

- Teamwork: the cancer patient's guide to talking with your doctor from the National Coalition for Cancer Survivorship

If I needed more to read after I finished those, no problem. My local public library lists over 1,200 books on the subject of cancer including the Betty Crocker Living with Cancer Cookbook. Then I can start into the websites.

What’s the problem here? Information good, right? More information, more good, right? So doctors, nurses, and the cancer societies of the universe should keep heaping it on, right?

Information is good, but there are two problems you encounter with such a huge pool of information: there is a LOT of variation in the pool that often contradicts itself, and information is not the goal here, knowledge is.

1 out of 1,000 Experts Agree

Let’s take that first problem, too much contradiction. This includes my previous examples of major differences in belief systems (the medical approach that pushes chemo based on scientific studies versus alternative approaches that value other things like healing stones and sweating). It also includes the fact that purposes behind the dissemination of information can lead to conflicts. Is this information from a doctor? Is this information paid for by pharmaceutical companies seeking more use of their products? But even accounting for these conflicts, the big issue is simply the awe-inspiring variety in people’s personal experiences with cancer.

I discovered this problem of too much idiosyncratic information when my wife was pregnant for the first time. Do you know how many things can go wrong during a pregnancy? Turns out a lot, and there is a blog devoted to each and every possibility. By the time you walk away searching the web you just want to take your wife, wrap her in bubble wrap and check her into the nearest hospital for the duration. Mind you, this was searching a web that was 14 years younger before folks Instagrammed their birth experiences (please stop that).

Cancer is the same thing. Some folks on ABVD (my chemo regime) zip through it with not one side effect. Others are puking their guts out within minutes of getting the chemicals. Some folks go to bed for six months, some folks are getting radiation at the same time (why wasn’t I being irradiated?!?).

You might think the old fallback of sticking with “reputable sources” would solve this problem. You’d be wrong. Try and read the reputable peer-reviewed scientific medical journals. First you’ll see that a huge number of articles are about three paragraphs long. Seriously, I can’t even show you an example here because I would end up including the whole article and violating copyright. The longer pieces? Turns out that I’m a doctor, but not that kind of doctor. Not to mention that the focus of these articles is often on future practice (they are research oriented after all). So you may read about a promising treatment and find out that so far three mice are responding well.

Dismissing for a moment the conspiracy theorists (“cancer cures are hidden away by Big Pharma looking to make money on chemo drugs”), the purely personal journey stuff (“I was only able to run half-marathons during treatment”), what do all of these sources seem to agree on? Hodgkin’s Lymphoma is curable, and chemotherapy is the best approach to take. Also, you shouldn’t have sex with a platelet count below 50, you should wash your fruits and vegetables when your white cell count falls below 4, and it’s OK to be down (but not depressed) during your “journey with cancer.”

What Doctors Can Learn from Professors

The second problem you encounter with this huge body of information on cancer is the lack of mechanisms to translate information into knowledge.

In medicine, and just about every industry, they think of information as a sort of magic fairy dust. If you have a problem, just sprinkle information on it. This certainly seems to be the approach of the American Cancer Society and the National Cancer Institute: “David has cancer and is confused. Quick! Inform the hell out of him!” This information fairy dust takes the form of books, printouts, websites, and pamphlets. What do we expect? That the information contained in these sources is just going to go into my head by osmosis? I wish (it would have made high-school French much easier). Even the excellent non-book/print services of places like the Leukemia & Lymphoma Society (peer counseling, support groups, local events) are easily lost in a sea of “available information.”

Information doesn’t work like that. In fact, information doesn’t really do anything. It is knowledge that matters. In other words, it’s not how many books you have; it’s what you learned from those books. It’s not how many informational pamphlets you get, it’s how much of the advice in those pamphlets actually change how you see and interact with the world. It is not information that matters – its knowledge.

Look at how we educate doctors in this country. Sure it starts in the classroom, but then it happens by focusing on people doing things…not just reading about them. Want to learn how to do a bone marrow biopsy? Get on this guy’s back and start digging. Now imagine if doctors extended this focus on learning and action over “informing” to their patients. Want to control diabetes? Instead of “Take these pills and lose weight,” it becomes “Do you understand what your body is doing with sugar and why extra weight is so problematic? Here is a pill…and here is how it works.” Which is faster? Write the prescription. Which is more effective? All the medical literature I read says the knowledge approach…I’m sorry, the patient-centered approach.

This idea of both more inclusion of the patient and situating the patient in a larger context could be seen in a recent visit of my brother-in-law to his primary care physician. Joe’s doctor asked, “Do you wear your seatbelt? Have you recently changed the batteries in your smoke alarm? Do you have a gun in the house?” Why these questions? It turns out that Joe is much more likely to die from car crashes, house fires, and accidental gunshots than any ailment at his age. It also gives Joe specific actions he can take now to continue his good health. While this may be natural for a primary care physician it is also important for a specialist. For example, knowing if a stem cell transplant patient gardens can be key to saving their life. You see, the transplant patient has a compromised immune system, and newly turned soil is full of bacteria and fungi that can lead to a life-threatening infection. If the doctor doesn’t know enough about the patient to warn them: potential catastrophe. If the patient doesn’t understand the concern enough to heed the warning: potential catastrophe.

Now I know what you are saying doctors. “I don’t have the time to turn everyone else into a physician.” Right. But do you have time to prepare a patient to at least be able to take care of themselves? Once again, if the goal is not the number of patients seen, but the ongoing health of a patient, you have to give that patient the tools and knowledge to take care of themselves. What’s more, just because you may not have time to teach the patient, don’t think that means the patient won’t learn something anyway. Remember the healing stones and dream therapy? Remember sweating out the cancer? Patients will, and should, seek out knowledge on their condition. If the evidence-based medical community abdicates this role in teaching (not just treating) the patient, others will gladly fill it with the information equivalent of snake oil.

If you accept that patients need to be a part of their care, and they have to be knowledgeable about their conditions and/or the means to stay healthy, then you too need to see medicine as a knowledge profession. Not simply because you, the doctor, need to be knowledgeable, but because you increase the knowledge of those you serve. That goes beyond handing them a printout. That goes beyond a 15 minute run-through of basic immunology after you tell someone they have a potentially lethal disease.

This must be considered and planned for. Doctors and nurses need to know about teaching. They need to know about learning and learning styles. We are already seeing this reflected in how medical students are being prepared. The MCAT, the test used for entrance into medical school, for example has dumped a whole lot of organic chemistry questions for psychology questions.[11] I know it is asking a lot of med students on top of all the immunology you need to know, but it will be worth it.

Now…back to my story.

Notes

Chapter 7: The ROC

My second round of chemo was at the Regional Oncology Center; better known as the ROC (pronounced “ROCK” and preferably in a Sean Connery-esque Scottish draw). The ROC is a bastion of brilliant nurses housed in a horrible bunker of a building. It literally lies underneath the construction of a brand new (no doubt gleaming) cancer center. To get to the ROC you walk into the main entrance of the hospital. You go through the lobby, turn right past admissions and down a long hallway past the pharmacy. Then you take a left to the Green Elevators. Take the elevator to the basement then follow the green light rope down a very, very, very long hallway. At the end of the hallway turn right to another elevator. Take the elevator to the first floor and you are at the entrance of the ROC. Now imagine doing this with half your normal red blood cells.

Once you are at the ROC you wait. First you wait in the exterior waiting room to get your blood drawn. Then you wait again in the exterior waiting room until they are ready to take your vitals (weight, blood pressure, temperature). Then you wait in a small examination room for the oncology fellow to talk to you. Then you wait for your oncologist to come and examine you. Then you wait for an available treatment cubby (three walls, a curtain, a heated chair, and a TV hanging from the ceiling). Then you wait for two nurses to be available (one to hang the chemo, the second to check it). Then you wait for the pharmacy to mix up your poisons. Then you sit being poisoned for 5 hours. Then you get to go home. The first Friday I went to the ROC was an unusually busy day. I got there at 9 a.m. for a 4-hour infusion. I left as the ROC closed at 5:30.

The highlight of my first outpatient treatment was that I got to meet my oncologist. It turns out it was Dr. B. This was a bit of a surprise as this was our first meeting. He had been the admitting doctor all those weeks ago in the ER. It didn’t matter that I had been working for weeks with another oncologist in the hospital; Dr. B was now in charge.

Dr. B informed me that with my advanced stage cancer (stage 3 I finally found out months later when I requested a copy of my medical records) he was planning on doing 6 to 8 cycles of ABVD. After 2 cycles I would have a PET scan to see how the cancer was responding. I also had to come in every week to have my blood drawn.

Now I have to stop here to explain something that took me a while to get a handle on. Oncology folks talk about chemo not in days and weeks, but in cycles. For ABVD a cycle consisted of 1 infusion (sitting in the chair for 4 hours) of the ABVD cocktail followed two weeks later by another infusion, followed by two weeks of sitting around waiting for the next cycle to start. So each cycle is roughly a month. Clear? Then let us proceed.

Truth be told, the first two infusions (the first cycle) were a breeze. Far from dealing with side effects, I actually felt like I had more energy than normal. I was putting in 18 and 20-hour days. I finished up my class. I started voluntarily offering a new online course for 2,300 people. I was up until three in the morning wide-awake. They say that insomnia is a side effect of chemo, but normally insomnia is a sort of desperation to sleep. This insomnia was full of energy.

It turns out two things were going on. The first was that I was still on high-dose steroids for my low platelet count (that was no longer low). I was also receiving additional steroids as part of the actual chemo infusion. While my six-pack abs never showed up, the steroids were giving me the energy of a Major League Baseball player…you know without the multimillion-dollar contract. Turns out corticosteroids that suppress your immune system are very different from the synthetic testosterone used to build muscles.

My Wife is Xena the Patient Advocate

I mentioned before how much I love my wife. I should also mention that I am also in awe of her. Having seen my wife give birth to my two sons, I am convinced that women could rule the world, they simply let the men play their games. Having seen my wife in action as both my caregiver and advocate, I know women do in fact run the world.

My wife was with me all through the undiagnosed weirdness. My wife was with me every day in the hospital. My wife has been to every appointment with every oncologist I have had. She is not simply there as moral support, or as a helpful ear. She is there as my caregiver and patient advocate.

She doesn’t let the doctor go until all our questions are answered. She is there to make sure no new prescriptions are added until they have been checked against what I am already on. It was my wife, Anna Maria, who asked, “If his platelets are back to normal, does he still need to be on steroids?” As I am writing these words, I am referring back to the notes she kept throughout this. I may be the boring patient, but she is the force that ensures I am never the underserved patient.

What reassuring message can I give to all the caregivers out there? Holy crap you are screwed. I’m sorry, but my wife has been single mother, chauffeur, nurse, bully, cheerleader, dishwasher, cook, accountant, and all of that was just in the first week of treatment. No one wants to bother me, so everyone calls my wife to get an update. This then leads to one of the more unexpected parts of being diagnosed with cancer…Anna Maria and I end up consoling everyone about my illness.

“Hello Anna Maria…how are you doing?”

“I’m pretty tired. I feel like I’ve been in the car all day driving everyone around.”

“That must be tough. How’s David?”

“He’s having a rough day today.”

“It’s just not fair. He’s so young, and you have the kids, and you guys are so nice,” followed by sobs.

“It’s OK, David’s going to be OK. We’re staying very positive.”

“I just don’t understand why you have to go through this.” More sobs.

“I know he’s going to be fine…in fact I think I can see the cancer shrinking as we speak.”

It can get pretty ridiculous. I was once yelled at by a colleague because I hadn’t done enough to let people know how to help me. On one hand, that’s kind of sweet. On the other hand: wait, is that my job?! I had a very good student that I spent the first two minutes of a scheduled advising call consoling. My wife finally just let folks know that she would be glad to talk, but if she’s not up to it, she’s just not going to answer the phone.

Let me just get a few things out of the way:

It is not fair that I got cancer. It is also not unfair that I got cancer. If you try to justify cancer or try to seek some deeper meaning in cancer, you end up chasing your tail forever. Does God hate me? Am I being tested? Why me? Cancer is a mutation, a mistake in DNA. Cancer doesn’t hate me. Cancer does not judge me. Cancer seeks to do one thing, and one thing alone: grow. Don’t ascribe any more power to the enemy than is absolutely necessary.

Anna Maria made it very clear to me at the beginning of my treatment, that I too have one job – kill it. She’ll take care of whatever else needs to be taken care of. And she has been able to draw on an incredible network of family and friends to do just that.

Look, there are whole books written by and about caregivers. I am in no position to say anything other than thank you to my advocate and love. I have said it before, and I will say it again: there is no joy in cancer save the network of love it exposes.

Ninja with an X-Ray

Through the first few infusions I was still using the PICC line they had installed in the hospital (I know there is a better word than installed, but as I’ve said, sometimes I get treated like a car). Every morning my wife would don latex gloves and keep the lines flushed with saline and heparin syringes. Every night I would tuck the two plastic tubes hanging out of my upper arm into an elastic bandage before I went to sleep. Don’t get me wrong, this was much better than having to go every week and have a needle thrust into my arm in search of a vein. However, a PICC line is considered temporary and needed to come out.

As I was going to be in treatment for a long time, the longer-term solution to a PICC is called a port. A port sits under the skin in your chest. It is a set of dome-like membranes that the needles can pierce. These domes (I have a dual lumen port…meaning two domes so they could hook up two IVs if they needed to) are connected to tubes that run up to your neck, then into a large vein and back down to just outside the heart.

I know that can sound uncomfortable, but you really don’t know it is there. I actually think everyone should have a port installed as a baby. Every time I would go to give blood pre-port it was an awkward scene of tourniquet, slapping my arm, and a frustrated phlebotomist. “There’s a good one,” stab. “Hmmm,” feel needle moving back and forth, “it was just there.” More moving. “Let’s try the other arm,” stab. “Let me go get someone else, I’m only allowed three sticks.”

With a port, the nurse (it has to be a nurse) feels the bumps on your chest, tells you to take a deep breath, and bingo, done. It is a godsend when you are in treatment. It just needs a USB connection so you could charge your phone on the go and it would be perfect.

Now to get your port installed is out-patient surgery. It is done by the medical department with by far the coolest name: interventional radiology. First, it is just cool to say. It also brings up images of doctors fighting crime with an MRI machine.

You go to the doctor’s office and get in a gown. Then you lay on a bed and they expose your chest, shave it, and douse it in sterilizer. Then they give you a shot of “I’m not so tense” juice. They then cover every other part of your body (including your face) with sterile blankets.

The doctor comes in and tells you “This is easy, I just need to make an incision in your chest and carve out a pocket for the port” (great, whittling as a medical treatment). “Then I’ll push the tube up your neck and we’ll be done.” It took maybe 5 minutes, I felt nothing but some odd pushing. The reason it was done at interventional radiology was that they guide the tubes up your chest and into your neck with real-time X-rays.

There is another reason I love interventional radiology (I’m going to just keep typing it out). I have been to three different procedures at interventional radiology and the folks there have always been hilarious. I’m not talking about nice, or simply a few jokes, but flat out hilarious. For my port procedure we ended up having a discussion of getting squirrels out of a shed by leaving tiny squirrel-sized condoms on the back porch. These are not completely normal folks, but still, I felt, my tribe. I just wish more physicians cutting into me shared their sense of humor.

With port in place and PICC line removed, the chemo and bloodletting at the ROC proceeded on with a new sense of routine. After I had finished two cycles (two months) of chemo, it was time for a PET scan…where they can’t use your port.

Positrons and Greedy Cells

The best tool that oncologists have to track the spread, and hopefully the retreat, of Hodgkin’s Lymphoma is the PET scan. PET stands for Positron Emission Tomography, and it is pretty damn cool. The basics are that you are given a radioactive tracer, normally glucose (sugar). Cells that divide rapidly need a lot of sugar to do their work. Cancer cells divide very rapidly, and therefore need a lot of sugar. So as the radioactive sugar goes coursing through your blood stream, the cancer cells (and your brain) gobble it up. Now all this time, this sugar, being radioactive, is decaying and throwing off positrons. Big PET scanners can pick up these positrons, and make a 3D model of your body showing anything that “lights up.” That will be your brain, your kidneys that are busy trying to filter your blood, and cancer cells.

Now, that’s the basics, but the practice is not as fun. First, your cells have to be hungry for sugar, and that means the day before your PET scan, no sugar. No anything that can quickly turn into sugar like carbohydrates. So pretty much, if you eat, eat protein. So I had fish for breakfast, turkey jerky to snack on, fish for lunch, and a nice piece of fish for dinner. Then nothing to eat or drink after midnight.

The next day you go to the imaging practice where they prick your finger and do a quick sugar test of your blood. Blood good? Great, time for the shot. The technician brings out the syringe with the radioactive glucose in a lead box. She opens the box to reveal a syringe encased in a thick titanium cylinder. “Wow,” I said.

“Oh, don’t worry. The metal is just there to protect me,” she said with not a hint of irony in her voice.

She then injects you with the glucose, and puts you in a quiet small room with a comfy chair. “Now, stay as still as you can for an hour. Anytime you use muscles, the muscles use sugar and it can throw off the scan.”

So, you are left alone in a dark room. You can’t move or you’ll throw off the scan that is going to show the doctor if your cancer is retreating or advancing. Tell me your nose wouldn’t start itching.

After the hour they have you pee, then lie on a flat plank. The plank moves you through an enormous donut like machine. First quickly (that is the CAT scan in about 30 seconds), then VERY slowly. The PET scan takes about 40 minutes to move you through the donut…still, for you? No moving!

It turns out my first PET scan was very encouraging. While there was no baseline PET scan to compare to, the lymph nodes and spleen were shrinking from the CAT scan I had in the hospital. There was much rejoicing in the Lankes household. The chemo appeared to be working. Which is a good thing. The bad thing is remember exactly how it was working. It was killing the cancer cells.

I remember Tweeting out how frustrating I found the chemo information sheets. They all had a heading to the effect of “What does this drug do?” They all said “Kills cancer cells.” My good friend Jill tweeted back “You would rather it tickle them?” Good point. However, the trick is that chemo doesn’t just kill cancer cells. Like that radioactive sugar from the PET scan, it kills rapidly dividing cells. And this leads to an increasing set of side effects.

Chapter 8: Your Side Effects Will Vary

There are two versions of the information sheets on the chemicals that make up a chemo treatment. One is written at a fourth grade reading level, and the other is a set that the doctors and nurses use. The nurses were nice enough to bring both of them to me. The “reader’s digest” version of a drug information sheet will tell you things like this is a drug used to treat cancer (duh). It will also have a nice list of side effects like hair loss, breathing issues, nausea and so forth. The doctor’s version? Well, one of the drugs in my regimen was Adriamycin, also known as Doxorubicin. It tells you things like “Use may lead to life-threatening heart damage.”

Then there’s Bleomycin. This beauty kills cancer…and it hates your lungs too. In early use it reduces your lung capacity by making it harder to transfer the oxygen you breathe into your blood stream. However, it also can create “pulmonary fibroids.” Fibroids are more or less scar tissue that makes it progressively harder and harder to breath. Yea?!

After the first month of doing very well on chemo (wired on steroids) the drugs started to take their toll. My hair fell out. At first from the top of my head (what little I had left), then my beard. Then it just sort of traveled down my body leaving me distinctly less furry than my normal half-Scottish

Losing my hair was no big deal. God had pretty much taken care of most of that anyway. The beard was harder, because I’m not a huge fan of my chin (or rather the fact that I have more than one). Losing the rest of the hair just turned out to be oddly inconvenient.

I promise to keep this PG, because there are some distinctly “R region” related lack of hair effects (I have no idea how porn stars live without pubic hair in the summer – that’s all I’m saying about that). For example, I had hair in my nose.

As a man, you become increasingly aware of the hair in your nose because it begins to wander out of the nose to get a good look at its surroundings. At first I thought losing this hair was a blessing…then I found out that hair is pretty much there to keep your sinuses in line. I had a runny nose throughout chemo. These days when I put on a coat or a jacket I’ll find a wadded up tissue or two in the pockets.

I was OK with losing my hair for the most part. I had tissues, and frankly looked younger without all the grey in my beard (my previous wife-prompted experiment with dying my beard did not go well). The hard part psychologically was losing my eyebrows. I didn’t look sick (to myself at least) until I had no eyebrows. There are a ton of programs to get women wigs, and the ROC even gave out free hats to men. There are no options for eyebrows. Every morning I would have to look in the mirror and see my sick self staring back. It was tough…it is still tough.

Figure 3: The hairless me

Figure 4: Before and after chemo

It was made slightly less tough with the help of my son Riley and my brother-in-law’s family. Riley would make eyebrow jokes, and some of them were really good. “Sorry Dad, does that make you mad? I couldn’t tell.” Then Joe and family came to visit in the summer. The next thing you know my wife’s eyebrow pencil is out and surprised Dave made an appearance, then mad Dave. We joked about adding a powdered wig for my professorial status, and the next week one arrived in the mail.

Losing my hair wasn’t the worst side effect though. The worst was a toss-up between losing my sense of taste, achy bones, and not being able to breathe. Three days after each infusion I would lose all sense of taste. I could be eating a pancake, steak, or mud and my tongue couldn’t tell the difference. Turns out your taste buds are fast dividing cells like you hair and cancer. However, in terms of side effects, I should probably talk about the not-breathing one first, huh?

With all of this information at my disposal about the toxicity of the chemicals in my chemo cocktail, my reaction to side effects changed. In the past, I was a bit more laid back about odd symptoms in my body. I once peed blood while staying at a Boston hotel and the next day drove home and forgot about it. I once spent the good part of an afternoon doubled over with excruciating abdominal pain in D.C. only to get up that evening and take the Metro to eat at Five Guys. Now, in chemo, I have the sniffles and I call and get directed to the emergency room.

This is what I learned was the downside of the ROC. The oncologists don’t really have offices like your primary care physician. With family doctors, if you have a sore throat, you call your doctor, and he or she sets up an appointment for you to come in and be seen. Not my oncologist though. Having stomach issues – emergency room. Fever? Emergency room. Stubbed toe? You guessed it, emergency room.

Now I mentioned my first trip to the ER with my stomach bug. The second trip came on the heels of a routine chemo infusion. The nurse mentioned that at this point in my chemo many folks complained about shortness of breath, or a tightening in the chest (remember Bleomycin?). So I got home that afternoon paying A LOT of attention to my breathing. Was it harder? Was it shallower? I do what I am told. Around 4 in the afternoon I call the ROC and say I believe my breathing is tougher (so hard to describe completely new sensations). “Go to the emergency room.”

“Couldn’t I just stop back and be seen by a doctor?”

“If you think you’re having breathing issues, go to the emergency room.”

So I went to the emergency room. Good news, I wasn’t having a heart attack. My “PulseOx” was fine (a reading from a little device they clip on your finger that measures your pulse and the amount of oxygen in your blood). So, let’s keep him overnight for observation – yea!

Turns out that, while I did lose lung function through chemo, I also found out (on my own) that the sleeping pills I was prescribed for my insomnia also have as a side-effect shortness of breath. Holistic medicine is such a great goal, but frankly not best practiced in an emergency room. A quick consult with a pharmacist would probably have saved me a trip.

Neulasta is a Deal with the Devil

I want to take a short break before I jump into my two other dreaded side effects to talk about a very important thing: a complete lack of words for new cancer sensations. For example, my good friend Jill brought me lunch in my hospital room after my first chemo. Lunch was great, but 10 minutes after she left my stomach…did something. Something bad.

Now it would be easy to say I got nauseous. It would be easy to say I had a sudden urge to use the bathroom. In truth, as I lay there cradling the toilet the best I could come up with was it felt like there was a pissed off bowling ball in my stomach that wanted out and was toying with its two options. I have had this feeling a total of three times. I hope not to have it again.

But there have been other weird sensations. I have neuropathy in my toes. That means nerve damage (a common side effect of chemo). That can mean pain, but most of the time it is…not….pain…exactly. It is not pins and needles. It is sort of feeling like your toes are freezing cold, bloated, and constantly letting you know they are there. Is there is a word for that?

One side effect I did have a name for though: pain. In Hodgkin’s Lymphoma the chemo is targeted at killing a part of your blood (mutated immune cells). There is collateral damage, namely other blood cells. When you get low red blood cells you get anemic and tired (and short of breath). The clinical response? If it gets too low you get a blood transfusion (I got a few of those). However, if your white cells get low, they can’t transfuse those, so they have to get your body to make more. They do this with a drug (growth factor really) that puts your bone marrow in overdrive making white cells. The long acting version of this drug is called Neulasta. It costs $8,000 a dose, but it is cheaper than a cancer patient getting a fever and spending the night in the emergency room so it has become part of the chemo infusion for many.

Here’s the issue with putting your bone marrow into overdrive…it needs more room to do more work. It is pumping out more cells, and the cells have to squeeze out of your big bones to get to the blood stream. The effect is that about a week after getting a shot my leg bones felt like they were exploding from the inside. Doctor’s advice? Tylenol. Effect: fetal position on bed with wife rubbing my back.

Next infusion my white counts were on the border. “No Neulasta,” I said. The doctor said fine. The nurse who was doing the chemo was not so happy. She had seen too many folks come into the emergency room or worse with neutropenic (low white blood cell) fevers. “It hurts too much,” I said.

“I’ll be right back,” she said.

She arrived back in my infusion cubby with an oncology fellow in tow. He handed me a prescription for Percocet and the Neulasta shot. And thus began my new love affair with prescription painkillers.

Chapter 9: HemOc

My wife/advocate/caregiver/warrior princess never really liked the ROC. It was crowded, there was a lot of waiting, and she didn’t find the visits with the doctors terribly helpful. We were both frustrated with the straight-to-the-emergency-room policy as well. She wanted a change.

Perhaps the final straw came during a visit with yet another oncology fellow. As always, my visit had started with blood work. The fellow noted that my red cells were low and was wondering why. He looked at me with a very serious face and asked, “Are you bleeding?”

Now there is an obvious answer to this question. You do a quick visual inspection of your hands, feel your butt where your last bleed was, and respond “I don’t think so.” Mind you, it does take a bit of restraint to not say something to the effect of “Oh that’s what that red stuff was flowing out of my nose,” or “You caught me, I was hoping to hide it until next week,” or even “Doctor, I don’t want to tell you your job, but as a girl matures into a woman…”

For my wife, this was the end. These medical fellows that came in seemed not only tentative, but downright unconfident. Either that, or they were like the Bringer of Doom, and unaffected by humanity. After our experience with the mystery illness and seeing the power of a second opinion from a world-class medical facility, Anna Maria knew it was time for a second opinion in my case.

She then did what she does best, she researched the topic. We had known plenty of people with cancer, so she asked them where they went. She went online. She read doctors’ bios, she put my little librarian brain to shame. “We are going to Dr. C at HemOc.” HemOc is a pseudonym for the book. I could have used Cancer R Us or the ChemoOutlet, but then I might lose credibility. “Dr. C specializes in Hodgkin’s, and his father even died from the disease.”

Now, moving to another oncology practice seems like it would be easy, but it turns out that three things have to happen to get a second opinion:

1. You need a referral from your current doctor (“Hi, while you are busy injecting toxins in me, I’d like you to send me to someone who I’m pretty sure knows better than you”).

2. You have to get permission from your insurance

3. You have to get the permission of the doctor you are being referred to.

It turns out while the first was awkward for me, it is business as usual and no real problem.

You would think the second step might be troublesome. After all it is almost an American pastime to complain about health insurance and coverage. I’m lucky, I have really good health insurance. Not only did they cover everything I had been going through, they even assigned me my own case manager to help me through the process. In my story, my health insurance is a hero. So item #2 was no problem.

Item 3? Ah, there was the process. Turns out you have to request a referral. Luckily I had seen someone in the practice years earlier for, ironically enough, enlarged lymph nodes found in my abdomen after a kidney stone (at the time insurance didn’t see justification for a PET scan so it was deemed probably nothing). So I could come in and see that doctor. “I would like to see Dr. C.”

“We can put in a request to have you transferred to Dr. C, but he and your current assigned doctor will have to agree.” They both did and I finally had an appointment. It turns out the appointment was something of an amazing thing for me. Dr. C looked over all my medical records, examined me, and then spent an hour talking with me about my case, chemo, even his dad. Was ABVD the standard treatment? Yes. Would he continue ABVD for the full 6 to 8 cycles? All evidence says that if the cancer is not gone after 6 cycles, it is not going away. If I got sick during a weekday would I be sent to an emergency room? No, Dr. C or a nurse practitioner would see me if it seemed non-urgent.

I was sold. I switched oncologists, and three weeks later showed up at HemOc to begin my third cycle of ABVD. It was different. First it was much more efficient. No sitting around to see the doctor for a routine infusion. So blood work and then right into infusion.

At the ROC infusion cubbies and everything seemed claustrophobic and separated. At HemOc you were in a wide-open room during infusion. You had your own TV but otherwise could say hi to your fellow patients and look out the windows. There was MUCH less waiting. One appointment they had live classical music played in the waiting room. I could park right outside the office. It was simply more pleasant.

Of course an open environment for transfusion can at times be awkward. For example, I requested to talk to a nutritionist on probiotics. That is an easy conversation. However, when you have to begin adding details about Irritable Bowel Syndrome and constipation, you kind of long for the cubbies.

Also, while it was clear that my progress was being monitored by the doctor, sometimes I missed actually seeing him. For example, the nurse told me that this infusion would be shorter because they were stopping the Bleomycin (the lung eater). My lung capacity was declining, and to stop the decline, you stop the Bleo. But don’t I need it? “Most people don’t make it all the way through. You made it halfway, that’s pretty good,” was the response I got back from the nurse.

I did see the doctor, or more often, his nurse practitioner B. B was great. She was straightforward and brutal…in a good way. I saw them both the day of my second PET scan after my fourth round of chemo.

It turns out that some chemo patients experience a bounce of lymph node growth. The first two rounds go great, then suddenly the chemo stops working. I know this because I have access to something called the Internet. The Internet is evil. To this day I don’t know if this is true, but it was first and foremost in my mind. What would happen with my lymph nodes…would they grow, would the cancer spread, would the chemo stop working…Nope, all was looking good and proceeding as expected. It was a “good scan.”

It was a happy night at the Lankes household. And, I only had two more cycles of chemo to go…because chemo sucks.

The End of Chemo

Remember how I said the first cycle went really well? How all those steroids actually gave me more energy and I felt great? Yeah, the second cycle didn’t go as well. With every cycle it got harder. I got more tired, I got more achy. I couldn’t taste anything. The worse might have been when my 13-year-old son had to help me climb the stairs.

The last month of chemo I had to teach a weeklong course. I could only teach the first half of the day, and had a fantastic doctoral student who covered the second half. I should take a moment here to acknowledge that if you ever have to get cancer, being a full professor at Syracuse University’s School of Information Studies is the place to work. The staff and faculty there were incredible. They supported me. They covered courses. I got not only a note of support from the chancellor and provost, they sent a meal for twenty. The entire university acted as a family I am forever indebted to them.

As chemo progressed, I walked more slowly. I lost my breath faster. The two parking attendants at my parking lot would ask how I was. They worried about me. Then one night I had a very frank conversation with one of them. “I’m glad things are going well. I wonder if you could do as well if you weren’t faculty?” She was right. I had control of my hours. I could work from home. If my publications slipped off, I had tenure. I am proud that I was productive during my initial chemo, but there is no question that I was in a privileged position.

I also want to make sure I don’t mislead anyone. I may have been productive while I was sick, but I hardly “didn’t miss a day of work.” I taught all my classes, but I had to pull out of a number of speaking engagements. I sent Skype sessions and recordings in place of me. I had to pull out of positions in professional associations. I had to close down a research project I had started. I had to hand off doctoral advisees to my overloaded colleagues. And with each one of those, with each retreat in my responsibilities at home or at work, I fought.

I would sit in my chair as my wife watched me wince with Neulasta pain. “Take the pill David,” she would say, referring to my painkillers. We would walk and she would stop. “What?”

“Stop and breathe…you are doing too much.”

When something needed to come up from the basement, “Sit!” she would command. “Riley can get it.”

With every slip, with every slowed step, I felt like I was becoming less. Less able, less important, less helpful, less of a man.

Here is the hardest lesson I learned in chemotherapy. I was not battling cancer. The chemo was battling cancer. Battling is the wrong metaphor. I didn’t feel like I was on the front line of some war. No, I was the home front. Once the battle was endorsed, I was the one at home sacrificing to support the war effort: taking the rations and reductions as part of my duty in the fight. The chemo was storming the barricades.

The key, I came to see, in beating cancer through chemo is not fighting, but acceptance. You must accept the drugs, and you must accept that the drugs are going to progressively take from you as much, or so it seems, as the cancer. You must accept that your legs will ache and weaken; that your breathing will constrict; that your bowels will constipate; that you will lose energy. You must accept that for the drugs to do their work – the true battle – you must accept a lack of control.

At the beginning it felt like a fight. I felt like I was waging the war with cancer, and screamed, “Screw cancer.” But the answer does not come from cancer, it comes from the poisons that kill cancer cells, and hair cells, and stomach cells, and white blood cells, and the components of your every body part. It comes as an unrelenting slow darkness that crosses your red lines, and keeps coming, and will keep coming so long as you accept the toxins.

One day you realize – after your good weeks become good days become good hours – this is the price you must pay to live. It is not a moment of fighting, it is a moment of acquiescence. You must give yourself over to the drugs, and your loved ones, and God. And it is hard. It is, in fact, the hardest thing you have ever done. Your whole life you have succeeded through action; through your wits, and your muscle, and your determination, and your own capabilities. But not now. Now you must depend on Bleomycin that eats away your lungs, and Vinblastine that robs you of your taste buds and hair. You must rely on your wife to drive the kids. To win, you must surrender.

Surrender to the process, to the treatment, to the care. NEVER to the cancer. NEVER to the thoughts of death. NEVER to anything other than life and the future.

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.

So after 6 months, the chemo came to an end. The next steps? Radiation if they still find cancer in one or two lymph nodes. Bone marrow transplantation if the lymphoma is still broadly distributed. But, hopefully, monitoring for recurrence and recovery-that’s plan A.

We had a party. My kids had worked all summer on earning their black belts in karate, and so we had a party for them. But as my wife said, “We have a lot to celebrate.” We invited both sets of parents. We had slushy machines, bouncy houses, and a tent. We took a lot of pictures and congratulated ourselves for seeing this nightmare through.

And we waited…

Chapter 10: Dear Doctor

You know what phrase I heard a lot in my hospital stays? Patient-centered. It was expressed as the idea that care was focused on the whole patient, not just their disease. More than that, the patient was part of the team working towards the ultimate goal of being healthy. In my field of library and information science we have a very similar approach called “user-centered.” It is the idea that the person using a system ultimately determines the value of that system, and so the system should be designed form a “user perspective.”

This was not always the case. Today you use Google without thinking about it. If you walk into a medical library, or did so as a student, you can search PubMed and other databases for articles. Today we take the idea of search for granted. Yet in the late 60s and early 70s searching for articles was hard. Computers were large, slow and unfriendly. So when a group of folks set out to use computers to look up articles, books and such, they did what any normal person would do: they started with what a computer was good at.

These groups of researchers, students, and engineers that would come to be known as information scientists used the Systems Approach. That is, determine how it is easiest for a computer to do the task set forth then train specialized operators to translate real people’s needs into what the computer can handle. Those specialized operators? Librarians.

So if you wanted to find articles about Hodgkin’s Lymphoma but not any other type of lymphoma, you would go to a librarian, tell him or her what you were looking for, and they would translate that into a specialized query (normally a Boolean query if you care about such things). The librarian was necessary not only because the search engine was hard to use, but it was also very costly, and a good query saves time (and therefore money).

As computers became more capable and eventually evolved into the desktop, system designers wanted to do away with the intermediary and the concept of the user was born. How could systems be made to operate with relative novices at the helm? What did users find valuable? For example, users, it turns out, responded to things like how the system looked, not just how it worked. Users want articles organized by how closely articles match their query (we call it relevance), not just alphabetically. And thus the Systems Approach was replaced with the User Approach, or simply, systems strived to be user-centered.

Suddenly in technology companies programmers were joined by anthropologists and sociologists that would tease user preferences out. New fields like Human Computer Interaction or HCI were born. HCI researchers would have users wear special eye tracking glasses so the researchers could see what users looked at and try to glean why.

For example, when Google first launched it would give you your search results in a column on the left, and relevant advertising in a narrower column on the right. Go search Google and look what’s on the right now…probably not advertising (ads are now mixed in with the results). Why? Because HCI researchers noted that within about three uses of Google NO ONE looked at the right-hand column.

Those MRI results you look at? You view them through an interface that was developed through these techniques. Those clunky medical records system you love so much? Believe it or not, they had a user experience engineer (or some such wacky title) design all those tabs and the color of the buttons. And therein lies the potential downfall of the user-centered experience, and likely the Achilles’ heel of patient-centered care.

You see, if I were designing a system just for you, and I was user-centered, the system would function and look exactly how you would expect. However, few systems are customized to one individual. The user-based approach looks for aggregate users, or user types (often called “personas”). So developers would test a bunch of doctors. Then they would try to meld all of these responses into a usable interface for those doctors. You know, because all doctors are exactly the same (note sarcasm here).

The user-based approach is ultimately flawed because either designers look at a bunch of users until they find one they already agree with, or they pretend that all members of a given group want the same thing. Ultimately the downfall with “user-based” is that it studies real users, but gives them little power to actually customize a system for individual needs. The user has little to no power.

Now take patient-centered practice. According to the literature, you are supposed to talk to the patient. You are supposed to let the patient ask questions and you try to answer them. Easy enough. Yet you are also supposed to include patients in the actual decision making process, and let’s be honest, that is a potential nightmare. Who is this person to make medical decisions? Even the idea of informed consent can be seen as a bit ridiculous. It’s a bit like the “why” game toddlers play.

“David, you have cancer.”

“Why?”

“One of the cells in your immune system mutated and began to divide uncontrollably.”

“Why?”

“We don’t know of one reason. It may be environmental, it may be partially genetic. We haven’t identified one cause.”

“Why?”

“Well, it is a complex task doing research on the human body. There are enormous complexities and interacting systems.”

“Why?”

“Well, primarily it is a result of evolution. As life forms evolved on earth they adapted to changing conditions, and over time developed complex ways of interacting with the world around them. Though complex, the development was still somewhat random, depending on both random mutations and environmental advantages gained by that mutation. We call it natural selection.”

“Why?”

“Why do we call it natural selection or why did we adapt?!”

Continue on until you get to “Because I said so!”

You get the point. When my oncologists recommended ABVD as my chemo regimen and asked me if that was OK, on what did I base my answer? Did I know about alkalizing agents, or where in the cell cycle certain chemicals would disrupt replication? Nope. I relied upon the experience of my doctors and what little research I could figure out on my own (and my research is easy because there has been an effective standard for over 3 decades). So was the question to me being patient-centered? Or was it simply shifting liability to the patient? Can we do better?

In the information field (and teaching, and higher education) there is a new approach beginning to emerge: a participatory approach. Yes it involves seeing people as more than just users – someone who uses. Yes it involves greater individualization of tools. But the key to it is actually involving the user/student/patient in the building of systems.

Take those medical records systems you love so much. All those tabs, all those workflows, all those drop down menus. Why is it so cluttered and crowded? Because it is a monolithic system built to handle an entire practice (if not the entire range of practices). Now compare that to something like Facebook.

If you look at what Facebook does, it is amazingly simple. It gives you a profile. It gives you a wall, and it gives you friends (plus advertising and an easy way to sell your privacy to corporations…but that is another rant). Then it gives you the ability to add your own components. Want to add a quiz as to which European City you should live in? Fine, add it. Want to add an invite for Candy Crush? No problem. You actually build Facebook around you. You speak to your friends so you can use your own language. You choose what your interests are, or what groups you belong to, so you can tailor your information flow. In essence it is not designed for you; instead, you design it.

Another example? Take your smartphone. What do you use it for? Phone calls? Sure. Texting? Probably. How about playing games, or looking up the weather, or ordering food? If you have ever added an app, you are not simply a user of that phone, you are crafting your mobile experience.

Today we take apps for granted, but when the first iPhone came out, you couldn’t add one. You were stuck with however Apple defined the needs of a user. Yet today, due to pressure from consumers and the industry, you no longer are just the user of your phone. You are an orchestrator of your mobile experience. Change the background, add solitaire, change the name…you are in charge – so long as you have the knowledge to add apps and such.

Now, how much control does your patient really have in their treatment? Yes, they ultimately have a stated or unstated veto to treatment (explicitly through consent, but also in their behavior, like taking or not taking prescribed drugs). But what else can they contribute to treatment? Does their medical record include not only your notes, but the notes/journal of the patient? Does the chart data come only from the medical instruments at your practice, or does it include the data from the pedometer I’m wearing on my wrist? Does it also include data from my other doctors?

Patient-centered is a great ideal, and has a good amount of evidence of effectiveness. However, the focus needs to not only be on informing the patient, but including the patient. Not only on coordinating treatment with other providers, but with caregivers and patient advocates. I know that sounds both time consuming and only really effective with a sub-set of your patients (those willing and able enough to intelligently add to care), but this is where technology can be helpful.

Rather than laboring over medical records systems that document a patient, what about medical problem-solving systems that allow collaboration and interaction. Yes I can go into “My Chart” through an app and see my test results, or send in a question, but it is really just a read-only history of how I was doing. Where’s my treatment plan? Does everyone have access to apps? No. Does everyone have the ability to fully learn or understand their conditions? No. But many people are willing and able to take true ownership of their health. To be truly patient-centered is not a hand-waving exercise to inclusion through informing, but in true participation and a dedication to teaching patients, not just treating them.

Part III: Transplant

Chapter 11: Schrödinger's Cat

Dear Medical Profession,

I’m not sure if you are familiar with the famous physics thought experiment of Schrödinger's Cat. You see in quantum physics the very act of observing a particle, fixes a particle. Until that observation, the exact speed and location of said particle is only a statistical probability. To illustrate how unusual this would be when applied to everyday life, Erwin Schrödinger thought about putting a cat in a box with a vial of poison. The vial is set up in such a way that there is a 50% chance of it shattering and killing the cat, and an equal chance of the vial remaining intact, and the cat surviving. According to the theory he was critiquing, Schrödinger's cat would be simultaneously dead and alive. Schrödinger was Austrian, by the way, and clearly had an odd sense of humor (or a deep problem with cats)

Why the physics lesson you ask? I was reminded of this story when you were telling me about my biopsy results today. You know, where one reading showed me clear of cancer, and one showed the cancer was still present? You see the connection? The differences here being of course: 1. I am not a cat, and 2. this is not in fact quantum physics. Unless of course, it is. Quantum physics that is.

Perhaps I have been secretly enrolled in a new advanced quantum medical experiment. This could be very cool. I don’t pretend to be a physicist, and so can’t fathom how looking at quarks and string theory might be applied to my treatment. I can only hope it involves hanging out in the particle accelerator, lounging with European lab assistants, a guest spot on the Big Bang Theory, and eventually collapsing into a black hole. I might, however, work on the consent agreement phrasing if I were you. As someone waiting for a cancer diagnosis isn’t naturally inclined to look favorably upon a shrug of the shoulders and a “call back tomorrow” answer.

Of course, I have completely overlooked the possibility that you did indeed think me a cat. In which case, with 8 lives lined up in reserve, the diagnosis of recurrent cancer also becomes less stressful. I can assure you that I am not a cat. I do not, for example, like saucers of milk as I am lactose intolerant. While I may sometimes put on an uncaring aura of disinterest in the people around me, this comes much more from a lack of social skills than from an ability to lick myself in odd places (I tried – no luck).

There is always the last option: you know that I am neither a cat nor part of a new quantum state of health. If this is in fact the case, I might suggest a quick resolution of my biopsy results. I know this can take time, and the word “science” in “medical science” is more goal than reality. Still, it would be a great help and load off of my mind to know that I am in fact not going to die…yet. We’re all going to die of course, I was just hoping my death would involve an amazing act of heroism, a quick resolution, a nice dose of surprise, and a large vat of chocolate mousse.

Since we’re on the subject of medical terminology and informing patients, might I make some more suggestions such as replacing the phrase “dropping a lung” as the description of deflating a lung during surgery, with the more illustrative “sitting an overweight elephant on your chest for a day or two.” Also, the phrase “a small air bubble in your chest” is infinitely preferable to “air embolism,” or “partially collapsed lung.” Also, answering the question “Is my diaphragm paralyzed?” with the question “Can you breathe?” may not be as comforting as intended…seeing as the obvious response is: “FOR NOW I CAN!”

So in closing, let me again congratulate you on the whole advancing human life expectancy thing. I look forward to that applying to my case as well, and can’t wait to see which biopsy result wins the lottery (or is it the greatest number of votes?).

Yours,

David Lankes

The answer to the question about my biopsy results, by the way, was positive. Not positive, as in “oh goody,” but positive as in “oh crap.” The cancer had come back. After 6 months of aggressive chemotherapy and more than a year of bad health, I am on the "left side" of the survivability curve. That's not the fun side.

When you get your initial diagnosis of Hodgkin’s Lymphoma it is almost a relief. You finally know what the hell is wrong with you and everything you read talks about the 90% survival rate. Just this morning my doctor told me that the good news is that 50% of folks who aren't cured with first-line chemo survive. That is true, of course, until you fill out all of the paperwork for the next line of “salvage treatment” (actual medical terminology). There you learn that only 30% of folks in this line of treatment don’t have a reoccurrence of cancer. But I’m getting ahead of myself.

I still had cancer, though it was much reduced. What’s Plan B? This was the question I asked Dr. C. His answer was autologous stem cell transplant. In fact he said that’s pretty much Plans B-Q. Which led to the next obvious question: what is an autologous stem cell transplant?

His first answer was a not too helpful metaphor. He said, “It’s like Bugs Bunny. Elmer Fudd fires a shot at Bugs. Bugs lifts his head off his body, allowing the shot to miss him, then re-attaches his head.” As I said, not too helpful.

“In essence we give you heavy duty chemo that wipes out the cancer, but also your bone marrow. After the chemo you get your own stem cells back that regrow the bone marrow.” The he added, “Going through the chemo isn’t much harder than what you’ve already been through.” He lied.

With that I was referred back to the hospital where my cancer journey started. The hospital had a bone marrow transplant program. I was referred to Dr. G who headed the program. Dr. G added more details to the transplant procedure, which she said was routine, as they had been doing this work since 1994.

Science Fiction Meets the Dark Ages

For my non-medical readers it is time for a little more biology. All those blood cells that I’ve talked about (reds, whites, and platelets) are produced by your bone marrow. This is the spongy substance that lives in your bones (primarily your big bones in your legs, hips, and arms). The chemo regimen the oncologists were proposing (that I’ll detail in a second) would kill off this marrow, and thus my ability to make blood cells. So the marrow would have to be replaced.

Many folks have heard of bone marrow transplants. You may also have heard about how painful they are. Harvesting bone marrow involves drilling into these bones and sucking out the marrow. It is a long and painful procedure, and it is quickly disappearing.

It turns out that within this marrow are special cells, called stem cells (more technically called pluripotent stem cells – as opposed to the more controversial embryonic stem cells). These stem cells are like a blank template that can be turned into any of the major blood cell types. So for procedures like mine, you don’t need all the marrow, just these stem cells. It also turns out that these stem cells will every so often hitch a ride with white blood cells and escape the bone and circulate in your blood stream. This means that these cells can be harvested “peripherally;” that is through an IV. No drilling, no sucking, much less pain, much easier.

Now comes the amazing part. To transplant these harvested stem cells into me after my bone marrow is killed off involves nothing more than injecting the stem cells into my blood stream. The stem cells find their way back inside my bones and regrow the marrow, and start cranking out all my needed blood cells.

Now you’ll remember from the Bringer of Doom story that my bone marrow was clear of cancer. That meant that rather than grabbing someone else’s stem cells (a donor), I could use my own. When you donate your own stem cells it is called an autologous transplant. When you get the stem cells from a donor, it is called an allogeneic transplant.

So what about the chemo? Well, if you did the transplant with cancer still growing, it would just give the cancer a new source of cells to work with. So you need to get rid of the cancer, and that means chemo. Since the normal chemo regime of ABVD hadn’t done it, we’d have to go to a different and more intense chemo. As one doctor put it, “We hit you with a hammer. Now we’re going to use a sledgehammer.” That sledgehammer is known as ICE for the toxins used. And those toxins are beauts.

Take Ifosfamide; the I in ICE. This drug is derived from mustard gas. Mustard gas. MUSTARD GAS! Yes, yes, that mustard gas. World War I, hunker down in the trenches, All Quiet on the Western Front, chemical weapon mustard gas. The E in ICE is for Etoposide. This comes from the May Apple plant. Don’t let the apple in the name fool you; this plant is poisonous. Native Americans used to boil the roots of this plant to make an ointment that killed warts. Oh, and the C is Carboplatin – it is used to disrupt DNA replication. If that doesn’t sound scary you may want to review DNA: The Secret of Life by James Watson (I don’t want to give it away, but it turns out that you need DNA replicating to be alive).

So I was going to get three or four rounds of ICE. If that put the cancer in remission (as seen on a PET scan), I’d harvest my stem cells, then go into the hospital for the REALLY big sledgehammer: BEAM. This is the cocktail that actually takes out your marrow. It includes Melphalan. While you are getting Melphalan the nurses have you eating ice chips to restrict blood flow to your mouth. Why? Because Melphalan scars your digestive track from your mouth to your ass. The restricted blood flow in your mouth from chewing ice just prevents (or at least moderates) open mouth sores. Yeah, this was going to be fun.

My wife’s conclusion upon learning about the treatment: this is serious, and it is time for a second opinion. Turns out my brother-in-law Joe had a connection and could get a consult at the Dana-Farber Institute. After seeing the Cleveland Clinic, we knew that there was value in the term “world class institution.”

Dana-Farber is different from any other medical facility I had been to. By the time I actually sat down with the doctor to review my case, I had been enrolled in three different clinical trials. Seriously. When I registered they put me in one about medical records. After I registered they asked if any tissues that may be extracted from my examination can be used in another trial. Then a third one if I actually started care there. It was an amazing operation.

It turns out there was no tissue extracted during my examination. Instead my wife and I sat and talked with a very experienced doctor/researcher in Hodgkin’s Lymphoma. From this meeting I learned:

- My treatment to this point (6 rounds of ABVD) was what he would have recommended, and more cycles of ABVD wouldn’t have done any good.

- The ICE/BEAM transplant procedure would be his next step, and that stem cell transplants were becoming increasingly routine (no real reason to do it in Boston versus Syracuse).

- The rate of lymphoma in the world was increasing, while the rate of Hodgkin’s Lymphoma was not.

- It was fine to take a vacation in Disney before I started the whole process because the cancer was microscopic at this point.

So, with my wife, we decided to do the treatment in Syracuse under the care of Dr. G, and then we flew down to the happiest place on earth for Thanksgiving. We had a great time. We rode Space Mountain. We had Thanksgiving dinner with my Aunt and Uncle and their family. I only broke down once thinking about the coming chemo.

Figure 5: The boys at Disney World

Chapter 12: ICE ICE Baby

So why ICE back in Syracuse? A very simple answer: the nurses. You may have noticed that when I have mentioned nurses to this point it is in a positive light. Let me amplify this: nurses are one of the great heroes of my cancer story. When I was in the hospital trying to get my initial diagnosis I spent a lot of time talking with nurses. They were patient, filled with humor, and supportive. After my first chemo treatment, they began posting signs with my platelet counts on my room’s window. They cheered me on as I did laps around the oncology ward. They set aside a room for me to teach my class in. They were my advocates with the doctors. They showed me the difference between what they coined as the “nursing approach” versus the “medical approach.” The nursing approach was to support the whole patient. The medical approach was diagnose and treat. Clearly both are needed, but if these models could merge, it would go a long way to improving medical care in this country.

In any case, ICE was different than ABVD. It was an in-patient chemo. So for three rounds, I would check into the hospital on Tuesday, and go home Friday. For that entire time I would be tied to an IV pump hooked up to my port. One of the nurses I was talking to was recently transferred from pediatric cancer. He said the kids all named and decorated their pump poles. I shared this with my wife via text while she was at a Bunco party (think the modern version of a bridge club but with dice and a lot more alcohol). A few minutes later and the text announced the decision of the group. My IV stand was now Bambi the Pole Dancer, and beads would be forthcoming.

I have to say, the first round of ICE wasn’t all that bad…while I was in the hospital. After I got home, I understood what they meant by the sledgehammer. I realize most of the time when folks asked how I was feeling they weren’t looking for more than an “OK” or “bleck,” and some asked it because they were not sure what else to ask. However, I’ve always had a hard time answering my more analytical friends and colleagues who take precision as somewhat a point of pride. The major problem with describing the side effects of chemo is that in many cases, these are the first time you have ever felt like that. “Tired” is just different than “I feel fine, lie down, and an hour later I am terrified while fighting for consciousness.” And “queasy” doesn’t quite cover the whole pissed off bowling ball thing mentioned in the section on Neulasta.

So, it was with a great sense of relief that I realized two days after I came home from my first ICE treatment that I knew exactly the sensation I was feeling: hungover. Now I know to many of you, this is in and of itself a less than precise description, but you have to understand that I’ve only been hungover four times in my life. Also, I’m pretty sure one of them was just me trying to convince myself I was hungover because I was a teenager, and that would be a rite of passage. No, this was a very specific hungover. This was my freshman-year-of-college hungover.

On a Sunday night mid-first semester my floor mates had convinced me (through great deliberation) that the only way you like beer is if you have been drunk on beer. This led to the magical appearance of a keg and me somehow in the suite at the end of the floor choking down beer. By about 2 in the morning the experiment was completed, and by 5 in the morning I was wandering around the floor in a brown terry cloth robe begging for someone to help me throw up (thank God this was pre-YouTube). My brain was simultaneously remarking on how stupid this was, and seeking warmer climes somewhere near the spinning ceiling. Being a visual arts student all my classes started at 8 in the morning, of which I made exactly none of them.

So, now when someone asks how was I feeling after coming home from the hospital I have an exact answer: hungover - right down to the brown terry cloth robe.

That sensation lasted for about two days, and then I was able to recover pretty well. I taught my class and kept busy. I was once again receiving the Neulasta shots, so I was preparing for the deep bone pain. Except, instead of my legs hurting it was my jaw. It really hurt. I went to see Dr. G and she thought it could just be the Neulasta.

The next day I pushed on a molar, the pain spiked, and I was off to the dentist. He took one look at the X-Ray and said “It has to come out, I’m sending you to an oral surgeon.” Dear God, Job just called and asked if “you could just give the kids a break.” The oral surgeon gave me a shot of happy juice, popped out the tooth, and life was much better.

A week later my hair began to fall out again. I had grown my beard back since my first chemo 5 months earlier. When I lost my hair previously it was slow. This time, the hair wanted off me, and wanted off now. I was in the shower one Sunday morning after Anna Maria had gone to church. In the shower I began pulling at the hairs on my chest and arms. It was coming out in clumps. The more I pulled, the more that came off, the more depressed I got. Chemo again, cancer again. I dried off and drove to join my wife at Church. I just needed to be near her. I finally lost my beard over Christmas. Then it was time for the next round of ICE.

ICE part 2: This time it's personal

The second round of ICE had a bit of a rough start in much the same way as if Lewis and Clark started their exploration of the Louisiana Territories by forgetting their boat. It seems in an attempt to keep folks out of the hospital on Christmas, every doctor admits their patients on the 26th. This makes things a bit of a logistical nightmare for admission.

In my case, the trials began by admitting me to a bed on a non-chemo ward. This would be fantastic and efficient if they could, in fact, actually administer chemo on said non-chemo ward. They can't. Nurses, for example, have to be qualified in chemo care (which as we’ve seen involves some knowledge of mustard gas and Native American remedies for warts). This became evident when they went to hook up my IV, which requires accessing my port, which they can't do. The "good news" is that one of the nurses had a friend who could do it. This was at 1:30 in the afternoon.

By about 3 the hospital had begun a great patient shifting to move folks out of the chemo wards who didn't need chemo and find me a room. I had visions of musical chairs where the losers were put into proctology and burn units. I was also informed I needed to get blood tests, because there was a chance I was too sick to poison today. Which was a problem because the nurse's "friend" had not stopped by.

By 5 a familiar and friendly nurse from oncology had shown up and accessed my port and drawn my blood. Also, my dinner had arrived so I could luxuriate in roasted potatoes, green beans and a small bowl of egg salad.

By 7 I was examined by a new doctor. This was either very reassuring or completely violating, as this is the first time I have seen this doctor and she definitely checked out all my lymph nodes thoroughly. I'll skip the anatomy lesson, but let me leave it at: there are lymph nodes below the diaphragm...far below. I also learned I was going to get a room in the transplant center.

At 8 I snuck up to the Tim Horton's on the 11th floor of the hospital and got a bagel. I also staged a daring raid on the oncology ward where I secured a box of frosted flakes and orange Jell-O. It was less about hunger than a sense of control and revenge. I have a very low competency in revenge.

At 9 p.m. (yup, you read that right) visiting hours ended. This is not relevant to the story as my wife had to go home hours ago in order to parent.

At 9:15 my new room was ready and I walked over to it...all 20 feet.

The nurses in the transplant ward were fantastic. While the wait to start was annoying, the start itself went well.

H, my nurse when I first got there, was funny and great and moved quickly. She was also great in talking about what to expect with the actual transplant and how to ease the experience (eat, walk, drink, wash, brush, and butt care). Apparently the best way to approach replacing your entire blood stream involves remembering what it was like to be a kindergartener.

They are definitely more precise in the transplant ward. The nurses put on gowns to set up the chemo and they wear masks when working on my IV lines. All instruments like stethoscopes and such are specific to the room so as not to spread germs. The room itself is HEPA filtered and positively pressurized for good measure. While doing ICE I was allowed to leave the ward to walk around, but once the transplant process started, I’d be confined to a small hallway 42 paces long.

ICE Part 3: You Get the Point

On January 15, two days after my 44th birthday, I was back in the hospital for my 3rd round of ICE. Everything was becoming pretty routine, with one twist. While I was in the hospital they wanted to get me ready for the stem cell harvest. It turns out the lovely port I had installed wasn’t quite big enough for apheresis (technical name for the harvest process), so I needed to be upgraded. I had two choices. The first was a “TriFusion Catheter.” This would be implanted in my chest (across from my port) and run much like a PICC line. The second option was a catheter in my groin (think top of the leg, not dangling bits) that would be inserted on the first day of the harvest and removed the last day…to which I said, “What was that first option again?”

Here is the prayer I said every day in my journey with cancer:

"Lord take this burden from me; but if it is mine to bear give me the courage and strength to see it through."

While getting my new TriFusion catheter, I realized just how that prayer was answered. As the prep team got me ready all they (and I) did was crack jokes. The operating room was filled with laughter.

"So I ask everyone from SU who their main rival is, and I always get the same answer...in football this one, and in basketball that one. I went to school at Texas and we only had one, Texas A&M. I think SU should pick its natural rival."

"Who is that?" I asked.

"FSU...it's right there in their name for God sake."

I walked right into that one.

On the isolation ward the nurses and I cracked jokes, and decorated Bambi – my IV pump pole. Anna Maria added beads and small disco balls to Bambi. During a late night walking session Nurse H and I got to talking about the best arrangement for Bambi’s decorations. H said, “It’s obvious right, beads up, balls down!” This became a rallying cry for H and me throughout the rest of the process.

“How’s it going David?”

“Beads up balls down H!”

All around me were examples of how courage and strength show up, and it wasn’t always with a punch line.

In the room next door to me was a woman who had just suffered a heart attack. Her daughter stopped by my door and we got to talking. The mother was being transferred to hospice and her friends were gathering, because it was a matter of days. The daughter didn't say this with sadness. Her mother was 90 and had lived a good life. Her mother was vibrant to the end. She would spend her last days surrounded by friends. In her daughter's voice I didn't hear despair or anger, but gratitude. "She's ready and she's had a good life."

People commented on how I managed to see humor in things even with cancer. I also hope I saw joy. I was using cancer. Using it to become closer to my wife and children. Using cancer to recharge, read, and think beyond the next trip and the next keynote I had to give. And I used cancer to laugh. Courage is not the absence of fear, but the ability to do something in spite of fear. And strength? That is not simply being stoic, or bearing pain. It is the ability to laugh, and joke, and to find the joy in the pain and people around you.

Humor would serve me very well after I had the catheter installed and gone home. It was going to be essential in handling the results of my next PET scan.

Chapter 13: PET Scans and Water

Remember Bringer of Doom from my initial diagnosis? Well, this is where she (briefly) comes back into my story. I tell you the following story:

1. To continue the narrative of the book,

2. To amuse the twisted and snarky,

3. As a cautionary tale for those who seek to serve.

Normally when you get a medical test, you get a result. Oftentimes, these are nice and definitive. For example, the morning I received the PET scan results I also got the results of my latest blood tests. I found out that my platelets were 17. That’s good, because two days before they were 7. You see what I mean about definitive. “Hey Dave, how are those platelets coming?”

“17, thanks for asking.”

Well, PET scans aren’t always so nice. They require professional interpretation. A radiologist looks at them and says things like “appears normal,” or “some indication of abnormality in the mesentery region.” This can be very unnerving. “Hey Dave, how’s that mesentery region?”

“Ah, you know, showing signs of abnormality.”

It is with this background that I went to see my oncologist Dr. G. As usual, the first doctor I saw was not my doctor, but one of a seemingly endless shifting cast of oncology fellows. It turns out this fellow I had seen before. She is the one that a year ago (almost to the day) told me that I had lymphoma and then kicked my wife out to do a bone marrow biopsy before the pathology lab closed: the Bringer of Doom.

Bringer of Doom came in that morning, asked how I was feeling, and then stated that the PET results showed uptake in the abdomen, meaning that the chemo wasn’t working. Worse still, as my wife pointed out, it seems to have spread since the last PET scan didn’t show anything in the gut.

I will pause here to point out for my more excitable readers that this story does, as far as it can, have a happy ending…just wait for it.

“Last PET scan? Was that in May?” asked Bringer of Doom.

“No it would have been October.” I responded attempting not to notice my wife’s tears welling up and her low refrain of “oh shoot oh shoot oh shoot,” (she didn’t actually use the word shoot).

“Was it here?” asked Bringer of Doom.

“No, it was at HemOc.”

“Oh, I’ll have to look at that in the external record. I only went back to November and I didn’t see anything. In any case, your doctor will be in soon,” and Bringer of Doom felt for my lymph nodes, listened to my lungs, and left.

Now I would like to describe to you the immensely awkward feeling you have when, in a small examination room with your wife, you are told that your “salvage treatment” (actual medical terminology) is not working. You can’t lose it or your wife will. You have to be brave and not 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. I had to have a social worker do an assessment of me for my insurance and now was the time. The best question asked during the assessment: How do you cope with stress? Answer: shrug. In case the social worker is reading this, I would like to change my answer – writing sarcastic prose.

So the social worker leaves, and in walks Dr. G, a new nurse, and, of course, Bringer of Doom.

“So I’ve looked at the PET scan results and actually they look pretty good to me,” says Doctor G.

“Glurp?!” is what I am guessing I said…just imagine Scooby Doo confused at something profound Shaggy just said and you’ll get the picture.

“Well, reading from October’s PET scan it is clear that all of the cancer in the neck and chest, where it was growing, is now gone,” said the angel wearing a lab coat. “What’s more, I’ll have to talk to the radiologist this afternoon, but PET scans always find junk in the mesentery region.”

“What is the mesentery region?” asked my wife who was clearly now paying very close attention.

“It is the tissue and such that interlace the bowels. The PET scan could be picking up bowel activity, or inflammation. I’ll know more when I talk to the radiologist. The point is that I see this as very positive. The chemo is working. The question is now whether to do one more round of chemo to be sure, or move into the harvest and transplant.”

I put quotes around that last part like it is what Dr. G actually said. Truth be told I know that was the gist of it, but a mix of relief and rage made the dictation a bit difficult. Relief that things were now looking up, and rage that we didn’t start at that point.

So I’m going to finish this story up in two ways:

1. Where I was in terms of my treatment and transplant, and

2. Why this is a cautionary tale for those who seek to serve.

So, for my treatment, Dr. G consulted the radiologist to look at the current and previous scan. They were convinced that chemo had been effective, and the mesentery stuff was just ghosts. So I was to proceed to harvesting my stem cells and then the actual transplant.

So, good news? Yes. Clearest best possible news? No, but those seem pretty hard to come by in medicine of any complexity.

Also, be assured that we brought up Bringer of Doom’s delivery issues and were assured it was a problem that would be dealt with.

Which brings me to those who seek to serve: we (librarians, teachers, professors, doctors) often like to talk about “informing” as if it were a verb that means something. The assumption we make is that by providing more information faster, we can help people make better decisions. What’s more, there is an unstated assumption that information is like water. Bad information can simply be flushed away with good information. This is wrong.

It is wrong because no matter how much water you use to flush something the previous taint leaves a mark; it leaves an imprint that will color all the information to follow. Because of Bringer of Doom’s propensity to deliver bad news badly, I had (have) more doubts about PET scans, my treatment, even the current state of my health and prognosis because that was where I started.

But, more importantly, the whole idea of “informing” and “more information canceling out bad information” is wrong because it represents a detached and clinical view of people. “To inform,” sounds objective. It sounds like we present the facts, or some nuggets of data that are entirely up to those receiving it to interpret. Too often we hide behind this idea to distance ourselves from the troubles of those we seek to serve. I am not saying this from one bad day with one doctor with bad people skills. Research shows us that how we get information and in what order matters.

Instead of informing users, we must see our job as helping a person to learn. Doctor, professor, teacher, librarian all can no longer believe that simply pushing information at someone and if necessary fixing it later is acceptable. When I learn, when I am “informed,” it is more than my memory and reason you affect. It is my emotions, my needs, my image of self.

There is a responsibility for those in the professional services to see beyond a question, or a task, or an interaction, and into the person they seek to serve. This is why we do not have “customers” who can simply return an item they do not like. Nor consumers who vacuum up our output. Nor do we have “users” that might as well be reading off a glowing screen. We have students, and patients, and faculty, and neighbors who come to us with what seem like questions, but are really needs, aspirations, and dreams.

I recall Betsy Kennedy, the director of the Cazenovia Public Library, talking about a program to give new books to poor kids. She talked about how one child upon receiving the book began to cry. “It’s the first new thing that I’ve ever owned,” said the child. That was not just a book, but worth, meaning, hope to that child, and Betsy knew it. She used that child’s inspiration to create programs to help other needy families. When the families came in for books for their kids, she and the other librarians and volunteers recognized the need for educational opportunities for the parents as well. She helped create GED programs located in food pantries for the needy of her region. She doesn’t serve readers, or patrons; she lifts up whole communities.

If all you do is stand behind the desk (real or metaphorical) and answer questions or inform – if all you do is lecture – if all you do is listen to a list of symptoms and prescribe drugs-then you are not doing your real job. Patients have better outcomes when they are part of treatment decisions. Students have better outcomes when they shape their learning. Members have better experiences when a librarian takes the time to get beyond the question to the real need.

What we know may make us experts, but whom we serve makes us noble. It is not in your insight and expertise we find the true measure of worth for a librarian, lawyer, doctor, or teacher. It is in the success of the communities we serve.

If you know you can impact someone’s life, take care and take the time to know when and how to teach. And if you don’t think you can have that kind of impact? Then please understand that you may well be the Bringer of Doom and not even know it.

Chapter 14: Harvest

Harvest is such a nice word. It brings about images of golden wheat in vast fields under a blue sky. The heat of summer yielding to the first crisp nip of fall. Stem cell harvesting is nothing like that. It is you in a small curtained room hooked up to a massive centrifuge with tubes of blood going everywhere. More Children of the Corn than Field of Dreams.

Remember all my bitching about Neulasta and bone pain? Well Neulasta has a little short-acting cousin named Neupogen. Where Neulasta is meant to increase white blood counts over a week or two, Neupogen is meant to do all that work in a day or two. Why does this matter? Because, as mentioned before, when all of these white blood cells are pumped out of your bones they take a few stem cells with them. So by getting two shots of Neupogen a day, I would be getting ready for the harvest the following week.

So, how to describe harvest?

It is done in a smallish room with two hospital beds separated by a curtain. Blood runs from one tube of my TriFusion catheter into an apheresis machine. There the blood moves around a maze of gears and wheels, and ultimately disappears into a dark cabinet where a centrifuge is housed. Two tubes come out of the housing. One to a bag suspended above the machine, and the other back to me.

You show up at the hospital at 8 in the morning and check in. Once in the apheresis room you get a set of blood tests and the once over from a physician. Assuming your levels are good, your blood starts the circuit of catheter to machine to catheter. And, as the nurses make abundantly clear, they don’t stop for 5 hours. Have to pee? Here’s a plastic jug. Have to defecate? Good news, here’s a dry toilet we can bring bedside.

About halfway through your collection a lab technician comes up and takes a sample of the stem cells being collected. At the end of the day, the whole bag is sent down to the lab (more on that in a minute) where they determine how many stem cells they’ve collected.

My goal was 4-5 million. Day one, about 2 million, see you tomorrow. Day two, another 1.3 million (so close), see you tomorrow. Day 3? Total of 4.8 million. Congratulations, see you next week for the actual transplant.

Mundane Miracles

For three days I laid in a bed as my blood flowed from my chest into that machine and then back into my chest. The stem cells were pumped throughout the day into a collection bag. That bag was literally my life as the following week I would go into a hospital and voluntarily take a lethal dose of chemicals. Chemicals that would kill off any remaining cancer (hopefully). Chemicals so potent that they would wipe out my bone marrow. Chemicals so toxic they would also rip away at my entire digestive track leaving blisters and sores in their wake. Without that bag of stem cells to regrow my bone marrow I would die. No way to heal, no way to stop bleeding, no way to feed my body the oxygen it needed to live.

I was marveling at this sci-fi like procedure when I saw that bag of stem cells (i.e., my life) put into a Ziploc bag and transported to a lab in an Igloo cooler. That’s right, the inventory of crucial pieces of equipment to keep me alive included the same equipment used to safeguard cheese sandwiches and transport six-packs of beer to the beach.

Figure 6: My harvested stem cells

Now I’ve been trying to write up some inspiring sermon-esque section on this transplant process. I’ve tried to figure out soaring rhetoric on faith, medicine, science, and such. After all, this is a big deal. An organ transplant…poisons…epic drama kind of stuff. But then I keep coming back to the Igloo cooler and the Ziploc bag. When you think about it, this whole thing is pretty absurd.

I mean I had to sign a consent form that said:

1. I can pull out of this procedure at any time, and

2. If I pull out of this procedure I will face “certain death.”

I actually signed a document that had the phrase “certain death” in it. I mean, seriously?! Who sits through a lethal dose of chemo and says, “You know what? I’m good.”

“But sir, if you leave now you will face CERTAIN DEATH!”

“Yeah, I’m OK with that, I got Tylenol at home.”

And seriously, an Igloo cooler? Who will be the first lab tech to mistake that for their lunch? “Ah, man? Stem cells again?”

When I got a PET scan they give me a shot from a syringe encased in friken titanium. When I got a chest X-Ray, they wheeled an armature with a full color display into my room – an X-Ray that can only take black and white images mind you. I’ve had my brain scanned with magnetic beams, and my gut outlined with protons and gamma rays…but the fluid that will save me from CERTAIN DEATH? Igloo and Ziploc.

How insane is this? I’m sitting all day as my blood is processed by a set piece from the original Star Trek series, watching the Olympics where the curling team uses high tech granite pucks with embedded hand sensors. Meanwhile, my stem cells will be injected into an IV line over the course of about 45 minutes…that’s the transplant. No lasers. No high-tech imaging device. Just a doctor and the same medical instrument that Sherlock Holmes used to shoot up over a century ago. How do they prepare the stem cells for transplant? They thaw them out in a warm water bath. Water! I hoped they would at least play some dramatic music on a Zune (yes I went there Microsoft – and no they didn’t do that).

It gets more absurd still. A year after I have this transplant, I will have to go back to the hospital to get my childhood vaccinations. In a year I will have to stare down the Jenny McCarthys of the world on the risks of diphtheria and MMR vaccination. After this miracle-of-science transplant my biggest fear is polio…POLIO!! The way this is going I’ll probably end up sitting in the “well kid” waiting room at my kid’s pediatrician’s office working on a puzzle out of a 1973 issue of Highlights magazine.

So, was there some lesson in this, some larger take away? I suppose it was this: when the extraordinary becomes the mundane, it is no less important. Those who deliver the essential, but expected, are doing something important. When my doctor delivers my stem cells in a routine infusion from an Igloo cooler, he will still be saving my life. When an optometrist fits you with optical technology (glasses) that has been around for centuries, you still can see. The world around us is so filled with the extraordinary that we have become used to it so as to make it seem mundane…but it is spectacular.

I pray you don’t have to fight cancer to see the extraordinary. Sure, we see it in toys and gadgets every day. We have become enamored with iPhones and smart watches and marvel at how fast/small/stylish they are. But try and recognize how incredible the everyday is. Next time you wash your hands, remember that indoor plumbing has saved more lives than any miracle drug.

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.

Chapter 15: A New Birthday

When you check into the hospital for your transplant, you are actually checking in for one last BIG chemo treatment and then the transplant. I suppose to create a sense of anticipation they call the first day you check in Day -6. Then you count down to Day 0, which is the day of the actual transplant.

Day -6 was mostly tests. Chest X-Ray to ensure I didn’t have pneumonia. A ton of blood cultures to make sure that all my ports and catheters were germ free. I also received two units of red blood cells for anemia brought on by the ICE. That evening I got the first chemical in the BEAM cocktail.

Day -5 to Day -1 were somewhat routine. I would get chemo. My mom and wife would take turns keeping me company. The kids stayed home, as no children under 12 were allowed to visit and we didn’t want Andrew to feel left out (or to inflict a hospital setting on Riley). The women in my life seemed to make it their personal mission to get me to walk. The nurses (did I mention they were amazing?) made it clear that every day I had to take a shower and I had to walk (also brush my teeth and gargle 5 to 10 times a day). If I didn’t walk in the hospital, I wouldn’t walk when I got home. So, I walked. Bambi the pole dancer and I would do our back and forth down the little hallway. 42 paces each way all tracked via a chart taped to my door. By the time I left I made 35 miles according to my pedometer.

Every morning a doctor (I only saw Dr. G once) and fellow would stop in on rounds. They’d look at my mouth for sores, make sure my feet weren’t swollen, tell me everything was going great and leave.

It was also during this time that oxycodone went from my favorite narcotic to my second favorite. The new winner? Ativan. Ativan was an anti-nausea drug, but had the side benefit of just calming me down and putting me to sleep at night.

There is a funny relationship between cancer and prescription medication. You can pretty much get any drug you want. There is not a lot of questioning or justifying going on. I would ring the bell, a nurse would look in the door, I would say “Ativan?” and then a little baggy would be added to my IV poll. I am pretty sure if I said “crack” it might have taken them longer, but eventually a rock and a pipe would show up. The thing is the nurses knew what was coming, and how bad it could get.

One nurse mentioned the difference between different ages going through the transplant. Younger folks (in their 20s) more or less wanted to be knocked out for the duration. Older patients had a myriad of other health problems that kept them in bed. The few of us in the middle (Hodgkin’s Lymphoma tends to strike folks in their 20s or their 60s) were the walkers pacing up and down that hallway. Perhaps we middle aged folks realized that the ability to walk and bounce back from chemo could not be taken for granted.

On Day -1 I ate ice chips for 15 minutes as the last of the BEAM cocktail was infused – the final part of my lethal injection. My bone marrow was now dead. I would now be dead if I didn’t get my frozen stem cells back.

Day 0

I had a bit of an audience for my actual transplant. My wife was there. Joe had come in from Boston. My mom was there with her husband Bob. The transplant started out with Ativan to keep me calm. The transplant nurse practitioner was clearly in charge. She had been with me every day, and had been a great source of information. She cleared the hallway and up came my stem cells, now frozen in liquid nitrogen (no Igloo cooler), and a water heating table. Dr. P, the head of oncology, was on duty, and he would push the actual stem cells. I lay in bed, the only person in the room without a mask (my audience also had red clown noses on over their masks to show the occasion the proper respect).

Figure 7: My audience for the transplant – pre clown noses

I had six bags of stem cells to go through – the result of my three days of harvest. The first bag was thawed and transferred into a very large syringe that was attached to my TriFusion catheter. The nurse practitioner prepared me. “As Dr. P pushes the stem cells in you may feel cold. You may also get nauseous. Most people feel a tightness in their chest.” Dr. P started pushing.

The TriFusion catheter is a relatively large tube that is also called a central line. A central line is one with direct access to the heart. The cold stem cells and preserving liquid were being pushed pretty nearly directly into my heart. The pressure in your chest feels more like your heart just got blown up like a balloon. It is not exactly painful, but it is not comfortable. Then I began to stink of creamed corn.

Stem cells are frozen with a preservative. This preservative gets absorbed by the blood and then exhaled through the lungs and your pores. For the next three days I would stink of creamed corn.

After the first syringe went in, they defrosted the next bag, and pushed the second syringe then the third.

At some point, as they were thawing another bag a priest from my church snuck in, spread oil on my forehead and disappeared. A drive by blessing.

The fourth syringe went in. I was shivering and a nurse and my wife covered me head to toe in blankets. Then the fifth.

An hour later, it was done.

Days +1 to +9

Here’s how Nurse C, another brilliant nurse in the transplant ward, explained what happens after the transplant:

Think of your new stem cells as college students. Right now is their first day of their freshman year. They’re trying to figure where everything is. They need to find their dorms (the way into your bones) and classes. In the next few days, they’ll do what college kids do when they are away from their parents, they’ll party. Unfortunately, you get the hangover.

The next few days they’ll mull about, not quite sure what they want their major to be and what they want to do with their life. Then about Day +5 (when they start injecting me with Neupogen again) they’ll get their first instructions (make white blood cells). They’ll pick their major and get to work.

A few days later (Day +7ish) they’ll begin to graduate, and get to work (in this case moving into my bloodstream and fixing all the things the chemo broke). They don’t have time to be milling about because there is so much work to do, and so few graduates to do it (in essence, I’ll be making blood cells, but they won’t show up on the blood tests).

Around Day +10 the stem cells will all begin to graduate and your counts will begin to recover.

Now I love this analogy for two reasons:

1. I understand it.

2. I can hold on to the idea that in the midst of feeling like crap, at least part of my body is having a good time.

It also explains why getting the lethal dose of chemo didn’t cause too many side effects, but Day +1 to Day +9 was a downward spiral. I got very tired (my wife and mother’s watchful visits became more about watching me nap than getting me to walk). Nausea got worse. Eating became a chore. The side of my tongue grew a sore that made it painful to talk. My throat felt like I had swallowed glass. With no white blood cells to fix the damage the chemo had wrought, I just felt worse and worse. I began to think the purpose of chemo was to make the thought of death much more palatable. I was receiving regular transfusions of red cells and platelets.

Day +9 was just a mess of lying in bed, passing in and out of sleep, and wanting it all to be done. Sleep – take oxycodone – sleep – Ativan – sleep – forced shower – sleep. You get the point. Finally, on Day +10 my counts showed the first sign of recovery; the first signs that the transplant was working. I had a white count of 0.3.

Loss of Hope

I woke up the morning of Day 10 with good news. My white blood count had climbed from 0.1 to 0.3. This was the first concrete sign that my stem cell transplant was working. My sores would start to heal, my pains subside. Good news. My wife was ecstatic, my kids did a happy dance video. I, on other hand, got depressed.

You see my life for the past two years had been full of false starts and promising milestones. I am declared seizure free, and two weeks later I am in the hospital with dangerously low platelets. This, in turn, led to a cancer diagnosis, so into chemotherapy I went -- a chemo with a nearly 90% cure rate. July rolled around, we all celebrated the end of chemo, and a seemingly clean PET Scan. Three months later, another biopsy showing that the lymphoma had not gone.

And so there I sat on the morning of Day +10, in the bone marrow transplant wing of the hospital, at the end of 3 months of lethal chemotherapy and stem cell collection, after 16 days of the systematic destruction of my digestive system, and there was hope? How could I hope again? How could I convince myself one more time that THIS time, THIS treatment, THIS procedure would be the one? When does optimism simply dissolve into deliberate ignorance?

Many had called me brave, or inspirational in my fight with cancer. There is nothing brave about battling cancer. The alternative to the battle takes the decision away. Chemo or death? Easy choice. Chance to live 5 to 40 more years…yes how brave of me to chose that.

Then I thought about my new life, the one we celebrated the day the stem cell were injected into my chest, February 24th. What would this new life be? Should I return to my former ways? Grants, speeches, projects, advisees? Should I recommit to changing the world? That work involved more than me. It would involve commitments of others, others that I had, over the previous two years, let down…a missed meeting, a failed project, dropping of commitments. Could I change the world and avoid that? Was it time to become the tenured full professor who teaches his classes, writes his books, and disappears into the ivory tower?

Hadn’t I earned that? Didn’t I deserve to be selfish and live every day just for itself, with my only effort to change the world through my wife and kids? Wasn’t that enough?

All these thoughts really got to me. Nurse H was seriously worried. She called in the Nurse Practitioner to talk to me, and probably prescribe some anti-depressants.

Then I thought “WHO THE HELL DO YOU THINK YOU ARE?”

Who among us is promised a full day on this earth? Who among us is free from the threats of disease, or violence, or stress, or poverty? How many people do I know that every day fight to pay the bills, who may go hungry? How many of the “lucky people” I walk by, those without cancer, are fighting their own demons of drugs, or discrimination, or abuse? Retreat to the Ivory Tower?!? Talk about a privilege problem. How many people would be happy with any job so long as it provided a paycheck? How many people would long for a roof over their heads? It must have been tough going through this medical procedure…with health insurance!

I had cancer and it might come back…and you may lose your job, and he may have a heart attack, and she may lose her child. We cannot live life cataloging potential disasters and saying “At least that didn’t happen to me,” ignoring that it happened to others. That is not living, that is hiding, and the only greater sin is believing that you have no part to play in the alleviation of other people’s pain.

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 better. 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 that the wages of our labor can provide a better world for us.

I have made a career of calling people to service. In the classroom, on the web, on stages around the world I have tried to equip an army of the hopeful to improve society. I never made a promise to that legion that our cause was guaranteed, or easy, or simple. But I did try to give hope. That hope continues with or without my cancer, or my very life. But while I have the ability to improve the world even a small bit, I will do so with hope.

That morning my white blood count went from 0.1 to 0.3. The doctors and nurses were hopeful that my levels would continue to rise to the point I could go home. They couldn’t promise it, but they could hope for it. I hoped they were right, because I had a lot of work to do.

Chapter 16: Home

Day +14, 20 days after I had checked in, I was going home. The nurses assured me that I had done well, and gotten through the process with the minimum of pain and problems. Two hours after I was wheeled down to interventional radiology for the removal of my catheter I was in my wife’s minivan driving home. The next week I went into the ROC everyday for blood tests, and the levels continued to slowly go up.

The big issue being home was food. Actually, food represented two problems. The first problem was that I didn’t want to eat. As Nurse H told me, “Think of eating as a job. It is something you have to do.” As I said in my introduction, eating was not normally my problem. The whole medical team even gave me liberty to eat anything I wanted. “This is your chance to eat Twinkies, ice cream, whatever you can get into your gut and keep it working.”

So why was eating junk food a problem? We come back to our favorite game: name that brand new sensation. When I looked at or tried to eat food it wasn’t nausea. It wasn’t repulsion. I just had a deep and intense disinterest. I would eat, working to take in every fork of the food. Water tasted bad. I managed to get down Gatorade. I slept a fair bit, took plenty of Ativan, and managed.

One Friday night Andrew, my youngest boy, had an orchestra performance at the high school. I took every narcotic I had so I wouldn’t miss it. I was on two anti-nausea drugs, oxycodone, and a few other goodies the doctors had sent me home with. I made it through the concert. The next morning it was like I turned a corner. My stomach was not only fine to eat, it was better than it had been in years. I took naps, but felt like I had tons of energy. I practically danced into the exam room the next Monday to see Dr. G. It was great.

She took the opportunity to remind me of the second problem with food and what was left of my immune system. Chemo not only killed off my stem cells, but a fair amount of the immunity and antibodies I had built over a lifetime. This meant avoiding crowds. This meant avoiding folks who were sick. I had to stay away from folks with a recent vaccine. For example, soldiers going overseas received a smallpox vaccine. I couldn’t be near them.

The big thing I had to worry about, though, was food-borne infections. No fast food for 6 months. No deli food. No food from a buffet. No food that hadn’t been either fully cooked, pasteurized, or processed in some way. As Nurse H put it, “Avoid food that goes through too many human hands.”

To drive home the point Dr. G told the story of one of her patients who stopped at an Amish roadside stand. She bought and ate some cheese curds. Then she died of listeria. These kinds of stories go a long way to making one paranoid about eating. In fact, as of this writing (nearly two months after the transplant) I have eaten out exactly twice.

As the weeks have passed I have not quite felt as good as I did after my son’s concert, but I’m doing very well. My wife and I go to the local YMCA and walk the track. I’ve been back to my office a few times. I am back chauffeuring the kids around.

The other day I was meeting with a former student back in my office for the first time since the transplant. He asked me if it was all done. Was cancer behind me? There is an easy answer to that question: the transplant is not a guarantee; it is only a 30-50% chance at a cure. It will be weeks until I get my first post-transplant PET scan. That will be the first in a series of scans and monitoring that will go on for years.

There is, however, a much harder answer as well. It is less concrete, and will more deeply affect the rest of my life. I will never be able to put cancer completely behind me. I will always be looking over my shoulder wondering if it will come back. I have talked to many cancer survivors and they tell me it gets easier. The doctor’s visits will get further and further apart and more routine. That may be.

For now, I am still scared to plan past a month. I still look at my kids asleep and wonder if I’ll see them graduate college or get married. For now I still worry about my wife alone. It turns out that cancer does not just attack my blood or grow in my lymph nodes; cancer gets into your head. This can either keep you in a constant state of fear, or, you can use cancer.

Chapter 17: Dear Fellow Cancer Survivor

This book does not have a very satisfying ending I admit. We seek some finality with cancer, but it will yield none. Was I cured? So far. Is it terminal? There is really only one way my journey ends: I die. It may be in a year, or 40 years, but only at that point will we know if it was from cancer or some other cause ("You can be hit be a bus tomorrow" as my dad would say). Remember we all have a terminal diagnosis; it just doesn't come with any specifics.

Here is the only advice I feel qualified to give you, the only lesson I feel confident in: use cancer. I don’t mean use it as an excuse to get out of obligations or things you don’t want to do. I don’t mean to use it like in some idealized country song to skydive and bull ride.

I mean use cancer as an excuse to talk to your fourteen year old about his life and get on the floor to build Legos with your eleven year old. As a dear friend from my childhood once asked as we were sharing stories of new fatherhood: when did we forget how to just play. Use cancer to learn how to simply play again.

Use cancer to have a date night with your wife even if it is cuddled up in a hospital bed watching basketball and Netflix. Use cancer to sit holding her on the couch instead of staying in the big comfy chair. Use cancer to remind yourself she needs to hear you laugh as well as know why you sigh. Find a song that makes you both cry together.

Use cancer to talk to your mother about God, and your dead father, and her fears and dreams. Realize how scared and angry and helpless and even guilty you would feel if it was your child with lymphoma and realize that is how she is feeling. Use cancer to be a better son.

Use cancer to learn. Learn how your body works and find that brother-in-law that can explain lymphocytes, platelets, and the reason you are losing your hair. And, if he does it while sending you pictures of naked mole rats and asks for pictures of your bruised ass to show to his freshmen biology class at the same time, you are truly blessed.

Use cancer to teach. Use it as a way to make people aware of warning signs, yes. But use cancer to teach a friend or colleague how to talk openly about a disease, what questions can’t be answered, what questions are too painful to answer. Teach doctors that patients are more than conditions to treat and that diagnoses are much less painful than uncertainty.

Use cancer to see the best in people. See how nurses can do their job, teach, and comfort at the same time. Use cancer to take the time to realize that as the doctor thrusts a steel pin in your hip for a bone marrow biopsy the nurse not only hands the doctor the right needle, but reaches out to hold your hand.

Use cancer to see that you are not alone. That the network of friends and colleagues and family suddenly go from an invisible web to a team that feeds you, comforts you, sits with you in the hospital at 5 am after a double shift, and loves you. See it in the parking attendant who for years you waved at and said goodnight to, and who one day stops you to ask if you are ok and upon the news of your cancer tells you he’ll be praying for you.

Use cancer to realize that if it is your children, or your work, or that network of family and friends, you will someday leave a legacy. A legacy that can only be built by your actions and decisions. Use cancer to hone that legacy, and work toward what you will leave behind.

I have seen all the cancer slogans, and love them all. “Kick cancer’s ass.” “Beat cancer.” “Cancer fears me.” I’ve been told that even at the beginning of this journey I am a “cancer survivor.” For me that one seems premature. But I am not a cancer victim. Yes I could die from this or some random virus I get, but that won’t be my legacy. Dying from cancer will not be my decision, nor will I learn to die. I will not use cancer to give up. Dying from cancer will not make me noble, any more than a freak mutation of DNA makes me any wiser – unless I use cancer to become so.

Epilogue: A Cancer Free Summer

The first post-transplant PET scan was in June, and it was clear. No lymph nodes lit up. No indications the cancer had returned. Unlike my days in the hospital and the return of my white blood cells the news was greeted warmly.

On September 9th I will have another PET scan as a pre-planned part of the normal monitoring after a stem cell transplant. Assuming everything is clear the scans will become less frequent; PET scans will be replaced with less involved CAT scans, and so on. After about 5 years, if all goes well, there will be little monitoring of any kind.

Assuming all goes well.

That’s the trick, of course: all going well. Throughout two rounds of chemo and through the transplant I always hoped for things to go well… but often they didn’t. Coming up to a scan was a growing chorus of worry with a crescendo of doubt in an examination room moments before meeting with the doctor for results.

My clear scan in June was the same, and frankly I expected the summer to be relief from good news making an inevitable transition to doubt and worry for the upcoming scan. But a funny thing happened: I chose to have a cancer free summer. Not biologically of course, but in my mind, I wasn’t going to worry about what might be going on in my lymph nodes for the three months between scans. I rollerbladed for the first time in three years. I said yes to projects. I taught, and I went on short trips. I got fat and furry and, well, I had a cancer free summer.

People asked during treatment if somehow I appreciated things more. Knowing that my time on Earth may be limited by cancer did I pay more attention to sunsets, blades of grass and such. Nope. I was too busy, or too sick, or too worried, or too tired, or, well, too cancer focused. I wrote earlier about using cancer, and I did. I paid very close attention to my boys, my wife and such, but I was always paying attention because I had cancer. It is too fine a line between paying attention and paying attention while you still can.

I wrote earlier on having optimism, and I was optimistic… but really, I was cautiously optimistic. The kind of cautious optimism that makes you smile as you re-check your life insurance policy and tuck a list of all your passwords for your wife into the safe.

These have all been things I have learned with cancer. This summer I learned something after cancer (or at least between…I’m still cautiously optimistic). I can make a decision to truly embrace the present. I decided to have a cancer free summer. Not to ignore reality, but rather to be joyful in the day. When I glide down the trail by Onondaga Lake I smile. The sky does indeed seem more brilliant and blue. The farmers market is a must for my Saturdays… not because it may be my last trip there, but because it is brimming with color and scents and it makes me happy.

This summer, this very day, I am genuinely happy. This summer has had its challenges, and I have had bad days, but I always return to a state of bliss. I am not living for the next scan, though I know full well that it is coming, and I know full well that it may not be clean. That is for the 9th not today. I am disappointed that I can’t go to the state fair this year with my compromised immune system. But you know what, it’s just a fair.

I wish I could tell you how to make a decision to enjoy your present. I hope it doesn’t take cancer to find this place. I also don’t know how long it will last. Is this just a summer, or can I continue to decide to be present and joyful? I hope so.

Throughout this book I have tried to look for some deeper meaning in my journey. I have tried to use pain to teach, uncertainty to give hope, and tragedy to call for action. Today’s sermon is not about deeper meanings, or tragedy, but perhaps one more lesson on hope. I hope for you to find joy in the moment. I hope you have the ability to choose to be happy. Be it the rainbow after the storm, or simply a respite before the next fight, I hope for you the bliss of simply living.

-David Lankes, August 22, 2014

About the Author

R. David Lankes is a professor and Dean’s Scholar for the New Librarianship at Syracuse University’s School of Information Studies. Lankes’ work involves how participatory concepts can reshape libraries and credibility. He is a passionate advocate for libraries and their essential role in today’s society. He has served on advisory boards and study teams in the fields of libraries, telecommunications, education, and transportation including at the National Academies. He has been a visiting fellow at the National Library of Canada and the Harvard School of Education. His book The Atlas of New Librarianship won the 2012 ABC-CLIO/Greenwood Award for the Best Book in Library Literature.

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

3 http://www.cancer.gov/cancertopics/wyntk/hodgkin

4 http://www.lung.org/lung-disease/lung-cancer/resources/facts-figures/lung-cancer-fact-sheet.html

5 http://www.cancer.org/cancer/cancerbasics/cancer-prevalence

6http://www.mayoclinic.org/healthy-living/fitness/expert-answers/heart-rate/faq-20057979

7 http://www.earthclinic.com/CURES/lymphoma.html

8 http://www.theweedblog.com/marijuana-may-provide-treatment-for-hodgkin-lymphoma

9http://projectavalon.net/forum4/showthread.php?68338-Help-with-alternative-treatment-for-Hodgkin-s-lymphoma

10 http://curezone.org/dis/1.asp?C0=785

11https://www.aamc.org/students/download/266006/data/2015previewguide.pdf