Today I finish my conditioning chemotherapy – getting my body ready to receive the new bone marrow. Tomorrow I will have total body radiation for the same purpose. Then on Friday morning my son will have marrow extracted from his pelvis, and in the afternoon, it will be put into me as an IV.
That is the predictable part. What comes next? Typically, about 14 days of waiting for the new bone marrow to “engraft;” populate my bones and start making new blood cells. During that time there will be a lot of checking blood counts and transfusions of red blood cells and platelets and making sure I don’t get an infection (they can’t transfuse white blood cells).
After the two weeks of waiting and watching is when they try and make sure my new blood system (the graft) is working (hopefully to kill any remaining cancer cells and fight infections), but not working too hard (trying to kill the rest of me – the host). This can show up as skin rashes, compromised liver function, compromised lung function, or a very unhappy set of intestines.
I won’t go into the statistics on success, survivability, cancer re-occurrence. Most of the folks who read this blog can find that data in a few seconds. It also, as a patient, doesn’t matter. You can only go into this believing it will work and the best outcome will be my outcome.
What has struck me to this point is not medical. It is social. The generosity of family, neighbors and colleagues has been humbling and inspiring. Meals, gas cards, blood donations, work tasks – it is overwhelming.
I leave you with an interesting fact. When this is all done, and of course a smashing success, I will have two different sets of DNA: I will be a chimera. Which means, fun fact, that if I leave any blood evidence at a scene of a crime, it will point to my son. I think that might keep him in check.
So I’ve got good news, and well, let’s pretend it’s good news, but it is going to mean some big changes for me in the coming year.
tl;dr version:
Chemotherapy is doing its job, but it is not enough to eliminate the underlying cancer.
This fall I will be starting an allogeneic stem cell transplant, a year-long process.
I am stepping back to the faculty for the year and Dick Kawooya will be interim director of SLIS.
The building of the global knowledge school continues.
Working with conference organizers, we have a plan for my fall keynote commitments.
I’m rearranging my social media presence.
There are ways you can help.
Thank you all for your concern and offers of assistance as I’m going through chemotherapy. The good news is that chemo is doing its job and killing the cancer. My most recent PET scan was clean. However, over the past few weeks the consensus of my doctors is the chemo alone will not eliminate the underlying cancer. In essence, chemo will push it back, but in a matter of months or possibly years the cancer will come back and most likely in a more resistant form – plus I’ll be older and have sustained the ongoing damage of chemotherapy.
Stem Cell Process
To truly give me a chance for a cure and long-term remission, I need to get an allogeneic (donor) stem cell transplant. This is an intensive process that involves me living within 20 minutes of the transplant clinic at Duke for at least 3 months, followed up with at least 3-9 more months of semi-isolation until my immune system is strong enough for the public.
For those playing our home game, this will be my second stem cell transplant. The difference is that years ago my transplant to get rid of my Hodgkin’s Lymphoma was autogenetic, i.e., I was my own cell donor. Well, apparently, I was a lousy source since my immune system keeps misbehaving, so it’s time for a new one.
This time, I’ll be getting someone else’s immune system. The bad news is that the normal sources of donors, siblings and the bone marrow registry, don’t have a match (I didn’t match the 19 million people in the registry – I am indeed a unique snowflake). Instead, I’ll be using a 50% match – my son. That’s right, my son is going to save my life. I fear this will lead to awkward holidays where he holds it over me to get extra gravy. On the other hand, at least my blood will be 50% Italian by the end of the year.
Stem cell transplants are intensive processes and they come with plenty of risk. The same benefits of a transplant (fighting cancer cells that my new immune system will see as foreign pathogens) can turn into big problems (seeing my entire body as a foreign invader called graft vs host disease). These risks are only amplified by the fact that this is my second transplant. Given the reality of transplant, I am stepping back as director of the School of Library and Information Science at the University of South Carolina and returning to the faculty for the year.
Dr. Dick Kawooya
SLIS has made too much progress and is making too many gains for a part time director. Dr. Dick Kawooya has agreed to serve as interim director for the year to continue the progress the faculty, students, staff, and alums have made. I will continue to push forward the agenda of the global knowledge school as a professor in my bubble. Special thanks to Dean Tom Reichert and the university for being so supportive during this whole thing.
Which brings me to some upcoming changes. I’ve been working with the conference organizers of my fall keynotes. Some will seek another speaker, but several have agreed to go with video keynotes. This has the advantage of giving organizers a chance to get my remarks translated for the audience. I still want to be out there pushing forward an agenda of librarianship grounded in knowledge and built around the community. While I may not be able to be there in person, I will connect online as I am able.
Speaking of online, I am making some changes to my online presence; particularly Facebook. Every day I get friend requests from librarians and allies around the globe. It is a diversity I truly cherish. However, Facebook is also the place I use to keep up to date with friends and family, and this will increasingly include more and more personal information. To keep my Facebook connections with the library community, I’ve created a public Facebook page at https://www.facebook.com/rdavidlankes/
Much of the content on my personal profile and this page will be the same. However, on the public page I will focus more on library and information science stuff, and a bit less on family photos (though some of those will end up here as well). If you are interested in the work I do, please connect at this page.
In the coming weeks I’ll begin to prune back the connections on my private page. Please don’t be insulted if I unfriend you…it is more a matter of keeping one site for my work and one for those whom I have a personal connection. My public site will also have updates on my treatment.
In closing, everyone has been amazingly generous in asking how they can help. Please please please sign up as a donor at bethematch.org as a potential donor. It is easy to sign up (a cheek swab), and donating stem cells is about as tough as donating blood. And donors that don’t look like me (middle aged white guys) are particularly needed. Your donation won’t save me, but it can save a life!
Please give blood if you are able. Every pint saves lives and one of those may well be mine.
If you know of a good sublet or housing option in Durham for 3 months let me know.
Lastly, please continue to support colleagues that are dealing with their own medical journeys. Every day I read about librarians bravely facing cancer, many with more grim prospects than my own. I also know of many professionals dealing with invisible ailments, too often stigmatized because of a chemical imbalance in the brain instead of the breast or lymph system.
As professional educators and librarians (the same thing), we seek to serve our communities with compassion and empathy. We must also extend that empathy to ourselves. We may disagree, but we must create a diverse and welcoming environment that supports intense dialogue without creating toxic environments. This isn’t about civility – too often a code word for suppressing dissent. Our conversations should be loud and frank and passionate. This is about staying true to our values of learning and service. Learning – literally changing one’s view of the world – is hard and it can be painful to embrace new understandings at the cost of the old. However, it is our duty not to relieve the labor of learning, but rather the pain associated with the recognition of former ignorance.
Some Resources if You Want to Know More:
https://bethematch.org to put your name on the registry and a great resource on transplants in general
Yesterday was a hard day – a low day. I think those in treatment for cancer need to acknowledge these. It was also a hard day for me in considering the directions and actions in my country and I think we need to acknowledge those as well.
Yesterday was my last infusion on chemo before a PET scan to see what effect it has been having. The infusions with mega steroids left me bone tired where just blinking seemed like work. Leaving the plan of chemo treatments to await a PET scan is not a comforting feeling – it takes a set schedule and direction forward and replaces it with a host of possibilities allowing you to go to the worst-case scenario – did the chemo work? Is it still growing? What’s next? It can get pretty dark in your head.
At the same time, I watched my social media feeds with stories of migrant camps on military bases; separated migrant children with little prospects for reuniting with their parents; potential roll backs of social safety nets and basic human rights; roll back of what little insurance protection people with pre-existing conditions have; the fact that our national policies seem to be an embrace of tyrants over our European and Canadian allies; and finally deaths in a newsroom shooting made worse by a direct linkage to a national dialog that demonizes those that do not agree with us.
Tired and sad and pessimistic is not an image I project. It is the opposite of the projection I want in my life and career…a fact that many of my critics are happy to point out (“library apologist” and “library cheerleader” being my favorite repeatable phrases). But even a pragmatic utopian gets tired.
So, I went with it. I moped, and I despaired, and I read the damn comments.
Then, I slept. I took the sleeping pill. This morning I woke up and read about librarians working collaboratively to track separated migrant children. I read about libraries improving communities around the globe. I read about female library directors speaking out about their right to be professionally respected and seeing men step up to acknowledge that right and their obligations to support these great directors. I read about the increase in first time candidates for public office who in the face of the same depressing news went to do something.
I saw my journalist colleagues call the public discourse to task and celebrate their own bravery. I have seen light in local politics that seek to make life better for students and citizens regardless with the gridlock at the national level. I re-read the letters my colleagues at the University of Washington condemning family separations and saw the social impact and responsibility mission of the LIS field is still there.
I chose to seek the way forward and not focus on all the obstacles…not to ignore those, but not to surrender to the hopelessness. It takes work. I have read many people talk about fatigue in the face of the constant negativism. For some that means needing regular escapes to reading or fiction or time off online. I respect those choices. As a profession and as human beings we must acknowledge that self-care is part of being a good professional. But for me, I have to do something.
So today I will get my sleep. I will acknowledge that I have options in my health (and acknowledge that that is a privilege I need to fight to expand to all). I need to acknowledge my past mistakes and re-evaluate past actions in light of new learning (let us all acknowledge the difficult irony that being a life-long learner means acknowledging that you are also to a degree ignorant for your entire past life). And I will make a plan to make a difference. I will seek out allies and be an ally. I will call out the bad, but also sing out the good. And I will rest. Elections matter, but so do daily calls to politicians. Tweets can express outrage, but programs and curriculum make changes.
I have cancer, but I also have power. I work in a profession that is awakening to the true difficulties of taking diversity of ideas and creeds, and people, and social classes into itself and what that means for neutrality. These are essential and difficult conversations and I need to be ready for them. Yesterday I was mad for what I lost. I was depressed. I have to allow myself to be there. Today? Today I chose to create something new in place of those losses.
Today I finished my first week of chemo. I hadn’t planned on posting much about my treatments because I didn’t want to distract from the important work going on at the School of Library and Information Science and the amazing progress we are making with the Knowledge School across the globe. Pardon the shameless self-promotion, but I do truly love my job and work with the most amazing set of faculty, staff, and students in the field.
However, I realize now, that we are all facing challenges as we pursue our missions in this life. It doesn’t detract from that work but enriches our understanding and appreciation of others. I struggle with balancing cancer and a job, but everyone is balancing something: illness, family obligations, financial issues, social pressures, discrimination…unfortunately a very long list.
In our LIS program we have full time teachers studying to be school librarians. Many of our doctoral students are becoming scholars while working in libraries. To hide one’s struggles simply ignores reality and ignores the honest concern and generosity of those who help us through.
So, I’ll let you know how things are going from time to time – no doubt focusing on the funny and absurd. I don’t see another book or anything so dramatic emerging from it. We caught a very treatable cancer early and I am very optimistic. There are plenty of more important things for folks to pay attention to and plenty of people more deserving of your generosity. But I want you to know I do treasure your support and kind words.
I have been diagnosed with non-Hodgkin’s lymphoma, specifically Diffuse Large B-Cell Lymphoma. For those keeping track at home, this is a different cancer than I went through before (that was Hodgkin’s). I will begin a combination of chemo and immune therapy in the next week. The prognosis is good. While it is an aggressive cancer, it is treatable, and indeed, curable. After three rounds of chemo over the summer there will most likely be some spot radiation then more chemo. If that doesn’t do the trick there are several “plan Bs.”
The reason I am making this public is that I will not be accepting new travel or speaking engagements until further notice. I plan on keeping my current commitments this fall and have been in touch with the organizers. Also, I’m about to lose what little hair I have left and am seeking sympathy 😉 I am continuing as director of the University of South Carolina’s School of Library and Information Science with the support of my faculty and dean. I worked through the last set of trials, I plan to do so here as well.
Getting my third cancer diagnosis is scary (though technically I can now be called a lymphomaniac). But I am privileged to have a flexible job, supportive colleagues, an amazing caregiver in my wife, and health insurance (which should be a right not a privilege…come on America). If you want to know how you can help, the short answer is give blood.
Three years and a day ago a nurse injected me with a lethal chemical cocktail designed to kill any remaining cancer cells in my body, destroying my bone marrow in the process. Three years ago a doctor pushed harvested stem cells directly into my heart where they were pumped to the rest of my body to regrow my marrow and save my life.
For my third birthday I was going to post an inspirational missive on moving forward and on the obligation to use the gift of life to improve the lives around us. Then I realized actually working to improve lives is more important than talking about my experience. So today, to mark my third birthday I want to talk about action.
We scholars and academics in the information domains have a special obligation in these days of alternative facts. We academics working with both information and communications have an even more urgent obligation. That obligation is to work with communities around the country and around the world to actively build knowledge and a common framework for evaluating the work of politicians, scientists, activists, and the citizenry.
Some will say that this is a function of better education. If we could do a better job of building literacy in our communities – information literacy, media literacy – then the natural result would be a more unified view of the world. The problem with this argument is that the current political separation is not the result of a lack of information or access to the media, or a naivety around information. The increasing ideological divide is not because our communities have too little information, or even a general gullibility. No, the increasing divide and introduction of alternative perspectives is rather a result of sophisticated and conscious information behavior.
Remember that the filter bubble problem we now face was a solution to the problem of information overload. It is the result of information scientists and communication scholars studying the idea of matching information seeking behaviors, tuning search engines to user preferences, sentiment analysis, hyperlocal information needs, hyperlocal news, that has shifted agency and decisions to the individual. We saw the flood of information and in a deliberate attempt to buffer a “fire hose” of information we built data science and interfaces and algorithms and newspapers of the future to lower cognitive load and better meet the needs of the user/reader/citizen/patron.
We are not facing a gullible public overrun by the algorithms of the greedy and the manipulative. We are facing citizens engaged with tools built with the best of intentions that, yes, can be (and are being) manipulated, but ultimately allow people to view knowledge as simply an information problem. That is, what one believes to be true, like information, is to be managed, tailored, and individualized without the necessary social responsibility to connect, debate, and develop consensus.
The danger is not seeing truth and meaning as contextual; it is in not proactively working to shape that context. This is not about alternative facts, propaganda, nor misinformation. These concepts have always been at play. The fake news of today is the yellow journalism of a century ago – defined more by profit motive than ideology. The problem is not in construction of meaning or in agreeing on facts, but rather the necessary social component of defining what those facts mean.
Librarians and journalists alike have been about helping communities make better decisions through access to knowledge. We both hold to a code of ethics and principles that favor rationalism and both at their core require an internal motivation to seek out the truth. But – and this is vital – we both also believe that such motivation must include a social knowledge aspect. That is, both believe that communities must act together as well as individuals within a community. It is not simply speaking truth to power; it is understanding that true power comes from common effort. Librarians and journalists must be part of moving people to action. Exposing corruption in the news must be met by editorial calls for consequence. Teaching information literacy must also mean teaching information activism. It is not about highlighting inequities; it is about fixing inequities. It is not just about calling for diversity; it is about empowering diverse voices.
And so I come back to action.
Our goal must be to be knowledge schools. Pushing forward our different fields of information, librarianship, journalism, and communications, yes. But also working together around a common mission of impact. A knowledge school must seek to not only document society, but to improve it. Not to be neutral, but to be truthful and to actively work with our communities to knit a common and ever-evolving worldview. In this worldview there will be disagreement and argument, but it will serve as a common framework for debate and ultimately learning.
I am alive today because scholars in the fields of biology, chemistry, medicine, nursing, public health, pharmacology, information, and communications strived not just for knowledge, but impact. The same scholars that developed deadly chemical weapons in World War I later saw that mustard gas could be used to stop the uncontrolled replication of cancer cells and would develop life-saving chemotherapy. I am here today because information scientists built technology to transfer billions of points of data into journals and clinical trials. I am here today because journalists, and public relations experts, and communication scholars helped transform cancer from a shameful scourge to a noble curable fight in the mind of the public.
We have seen the power of scholars in information and communication coming together to save lives by fighting the misinformation campaigns of big tobacco. We have seen reporters work with librarians to uncover corporate malfeasance where carcinogens pollute the environment. We have seen those same reporters and librarians then hold those responsible accountable.
We all stand at an inflection point with the current national political climate. We have seen a resurgent press seek to hold politician and policy accountable. We have seen librarians stand up for the rights and voices of all community members. In the halls of academia, we must also seize this moment with our research and our teaching and our service. We information and communication scholars need to develop a response (systems, theories, courses, graduates) that replace walls of isolating code that encircle ideological factions, with platforms of community knowledge building. We must model that strident argument and sincere disagreement does not have to result in factions and fractures, but in a clearer understanding of the world. That has been the cornerstone of scholarship since Socrates, and it is our responsibility to promote that throughout society.
* Thanks to Professor Ernest Wiggins for his feedback
In the run up to my 3rd birthday I’ve put my book on my cancer journey fully online. You can still download it or listen to it as well (or buy a print copy).
Hi! If you are reading this right now it is because folks like you, and thousands more who support the Leukemia & Lymphoma Society at events like Light the Night. It is through their work and your generous support, that I survived Hodgkin’s Lymphoma. Funding supports research and service that lead to treatments and stem cell transplants. It has transformed what was once a death sentence into cures.
This year my family is once again going to Light the Night to raise funding and awareness of blood cancers. Please join them as they walk Thursday the 27th here in Columbia (at the State House). If you can’t make it to South Carolina there are walks all across the country, or donate to support our team, Mission Remission.
Thanks again for your support and, you know, my life.
Two years ago yesterday nurses were shoveling ice chips into my mouth to minimize oral blisters from a Melphalan injection. The Melphalan was the last ingredient of a toxic chemo cocktail that would kill my bone marrow, and thus my ability to make blood or muster an immune response. In essence, two year ago yesterday I received a lethal dose of chemo as a salvage attempt to rid my body of cancer because the preceding 6 months of chemical warfare was insufficient.
Two years ago today a doctor slowly pushed six syringes of my own frozen stem cells into my heart. The now thawed cells would find their way back to the not decimated core of my bones and, slowly at first, begins to make the cells to feed, defend, and repair my body.
Yesterday I received six shots as my second year vaccinations, completing a two year journey of recovery and a suppressed immune system. Two years of fearing colds, only eating hot processed foods. Two years of regrowing muscle, and weaning myself from drugs that modulated my pain, my blood chemistry, even my sleep. Two years from 42 steps in a hospital ward to going home to going to work to going on airplanes to visiting the world.
Since that day of ultimate peril I have been to the Tower of London, down the Italian boot swimming in the Mediterranean Sea, to the resort coast of Belgium, to the flower markets of Amsterdam, enjoyed a November Spring in New Zealand and a February summer in Australia. I have ridden a Segway through an historic garden in Rome, examines 1,500 year old illuminated manuscripts in the archives of Bruges, toured the Vatican Library, and three days ago plunged to the floor of the Gulf of Mexico to scuba among the fish.
I did all this with the love and support of a wife who never lost faith. With a mother who shared her faith with me. With two boys who make me more proud than I ever thought was possible. I have done it with co-workers who picked up the things I dropped and a community of colleagues who now truly span the globe. By my side have been doctors and nurses and medical technicians that healed my body and fed my mind.
I pray that you never have to learn what you are capable of by facing cancer, but there is nothing inherent in recovery that makes us challenge ourselves. Travel, fellowship, love, risk is ultimately a choice. A choice to say yes and know that you will fall. But also know you will get up. And if you can’t get up at first know that you can ask for help. A choice to see the world, even if your world is only as far as the street corner.
Not everyone recovers from cancer or a stem cell transplant. Not everyone will regain his or her strength or mobility. I am lucky. Cancer no longer defines my life or the confines within it. I choose to move beyond being a survivor to simply being a person. A person faced with decisions, tragedy, and triumph. I choose to engage, to attempt, to plan, to move forward and to face the barbs and pain that comes with that choice. What do you choose?
