A Point of Closing Optimism

In August the University of South Carolina Columbia campus will welcome students back for the Fall semester. I will be there to welcome them. That is not an extraordinary sentence in most times, but, as we have all become sick of hearing, these are not most times.

You see, I have every reason not to be there. A new cancer diagnosis in 2017 led to a second bone marrow transplant in 2018. Two years may sound like a long time to recover, but unlike my first bone marrow transplant in 2014, this last one was a donor match and at this point in my recovery my oncologist estimates my immune system at about 25% of normal.

In early March when I asked him what would happen if I contracted the coronavirus his reply was succinct, “you would probably survive, but you would be very sick.” That was early days for this pandemic. His conclusion has not changed.

The university says I don’t have to be there. They have been clear that it is my choice to be on campus, just like it is the choice for students, staff, and faculty. I very much appreciate that choice. But, I will still be there.

The class I will be teaching is online. All of our graduate classes are, and our faculty teaching our undergraduate classes have plenty of experience teaching online. Looking at the teaching evaluations from this last semester, one might ask “what pandemic?” No scores were out of line with previous semesters. In the dozens of classes I looked at I found 4 mentions of moving online – and the only negative one was about how this student wished non-iSchool classes went as smoothly. My faculty doesn’t need me to help them in their classes. But I will still be there.

I love my job because of the people I work with. Staff and faculty left offices over spring break and haven’t been back since. However, not for one minute has the work of the school lagged or been derailed. GoToMeeting, emails, texts, and phone calls have demonstrated that my staff can do their work remotely and well. My staff doesn’t need me there to monitor them. But I will still be there.

I will be there wearing a mask. I will be there with hand sanitizer at the ready. I will wipe surfaces. I will stand 6 feet apart. I will be there because I am asking people I am responsible for to be there if they so choose. I will be there because I would never ask someone to do what I am unwilling to do.

This may seem like a lot of bluster for “so you’re going to do your job?” I get it. But the reason I write this is because we are at a very vulnerable point. A point of closing optimism.

I wrote on April 30 about a New Normal Agenda for Libraries in which I called upon all of us to help create an optimistic new normal for our communities. To ensure that a post-pandemic world was better than before – founded on correcting the fractures and disparities put on vivid display by this crisis: Truly bridging a digital divide where the internet is a utility for all. Working to reform a copyright system based on profit over knowledge creation. Expanding democratic participation, workforce preparation, and standing ready in times of crisis.

In literally the two weeks since I wrote that I have seen a rise of conspiracy theories and denying the very trauma we are living through. I have seen armed protestors defining liberty in the absence of personal and social responsibility. I have seen old political divisions intent on scoring points and raising poll numbers in the face of a generational wakeup call that screams for unity. I have seen times that try a world’s soul result not in calls for cooperation and equity, but in heated arguments on who can make who wear a God damned mask at Costco. Wear a God damned mask.

It has been a dark two weeks for me. And then I began to talk with librarians either opening their libraries or developing plans to do so. I have seen the Facebook posts and Tweets and petitions that libraries should just remain closed and there is no safe way to open. I get it. I would like to agree. To be clear I do agree that simply reopening libraries as they were in some sense of vocational awe or moral obligation is wrong. But that’s not what the librarians I have been talking to, watching, working with are doing. What these folks have shown me is that optimism without pragmatism is as empty as liberty without sacrifice. To get to that New Normal agenda, we have some hard and frankly frightening, and dangerous work to do. Not just in libraries or universities, but across the country.

The librarians I have been talking to are not only fully aware of the risks of opening, even for limited service, they are driven by it. The plans they have shared and put in place, often as a direct response to larger municipal and state mandates, are thoughtful, and, most importantly, collaboratively developed. They have been built on CDC guidelines. WHO guidelines. Guidance from universities. They have been reviewed, amended, and approved by unions, staff, and public health officials. They minimize contact between member and staff, between staff and staff, between staff and materials. They require social distancing, personal protective equipment, and security – like physical security for those who feel their right to infect others outweighs their responsibilities to wear a mask. They have circuit breaker provisions that close services and protect library workers in case of new outbreaks. They make provisions for high risk employees. And to a one, they include shared risk by all levels of an organization. All of them also continue to drive innovation and true community-centered virtual service that continues to demonstrate that libraries are about communities not just things we can loan out.

The reason I am writing this, sharing this, is because these conversations have shown me that my unique and privileged position requires me to be on the record. If those that I educate and collaborate with are required to state their position, then I am so obligated. Just as if I am going to support my university reopening the campus, I am obligated to risk my own health and be there (and work like hell to keep myself and everyone else healthy).

Here’s what we know. The virus is not going away. Sheltering at home flattened a curve and continuing evidence-based hygiene and social distancing precautions saves lives. We need massive, cheap, quick, and readily available testing now everywhere. Even when a vaccine is developed, it will have to overcome a number of obstacles, not the least of which is an anti-vaxxer movement that by all rights should simply disappear in the face of a global pandemic.  We know that this pandemic and the resulting economic collapse has put our most vulnerable citizens, especially people of color and the poor at greatest risk. And we know that professionals dedicated to increasing societal knowledge and equity are vital not just online, but in the trenches. We also know that a second wave of infection is likely and we cannot be rash and undo the sacrifice of the past months.

But here’s what else I know. I know that the point of closing optimism must became the point of opening pragmatism or it became the moment of despair. I know that what frightens me more than the virus is a return to a nation divided, unresponsive to those in need, and all too often given to willful ignorance.

Some will criticize me for calling for a cautious reopening. I respect their opinion and continue to be open to conversation. If nothing else I hope this post shows my thinking and continued evolution on the topic. I know some may take these words as a sort of call for removing all restrictions or as a belief that everything is safe now – don’t. Such a reading is just dishonest at best. Let us all acknowledge the complexity of this situation and not be drawn into the trap of flattening narratives into right and wrong, good and bad, open and close. It was that thinking that got us here to begin with.

If you can stay home, for God’s sake stay home. If you have to go out to feed your family, to get medical treatment, to ensure our society still functions, please do so safely. If you don’t need that book, don’t do curbside pickup. If you learn well online, don’t come to campus. If you need to protest, wear a mask not a gun. But if you need a place to sleep or to get out of a dangerous home situation, or for your well-being you need to connect to people in md-August, I’ll be there to open the doors. If you need to connect to the internet to continue your education or keep your job or keep our government accountable, I’ll be there pushing for a new normal.

“Saying Thank You”

Every year the Duke Adult Bone Marrow and Transplant Clinic hosts a reunion of transplant recipients. They asked my son (and donor) to speak this year, my first reunion. It was an amazing event, and it was so amazing to meet folks who were celebrating transplants from 25 years ago. Following is the text of my remarks.

How do I say thank you to someone for saving my life? How do I say thank you to my son who spent his first day of college face down on a table as Steel needles extracted bone marrow from his pelvic bone? Or, who years earlier, when he was only thirteen had to help his father up the stairs when I was too weak to make it on my own?

How do I say thank you to my younger son for caring and supporting me when all I could give him for nearly half of his life was worrying about cancer – would it kill his father? Would it return? Why did I have to be without my parents for months? Why did my dad miss my concert? How do I get close to a man when I’m told a virus I got at school could put him in the hospital, or worse? How do I thank my son for not breaking when at 10 after weeks of celebrating the end of chemo, I had to share the news that the cancer was back, the chemo was back, the pain was back, the fear was back?

How do I say thank you to my wife who hourly took my temperature-every hour on the hour-to make sure I was ok, or awoke as I cried out at 3 am convinced I was suffocating during a panic attack? Thank a woman who clearly married me for my good looks, for sweeping up the growing piles of hair on the bathroom floor, and the dinner table, and the car…surprising us both how much hair I actually had to lose? How do you let your soulmate know that the only thing worse than bone shattering pain of Neulasta is knowing her feeling of helplessness watching you hurt? How can you thank her for all the times she crawled into bed to hold you, and let her know her love, her touch, her simple presence was stronger relief than any opioid?

How do I thank a mother and stepfather who uprooted their lives to care for my family when I could not? A mother who would sit by my chemo chair and talk about how as wife and mother she recovered from my father’s death, and how we live a good life. And a new father who financially helped a family linked by love instead of DNA.

How do I say thank you to nurses who cheered me on and an instant later threatened to take away my nausea meds if I didn’t walk every day or who shared stories of soccer and beer, and who never, never, never made me feel any less dignified, or worthy or human? The nurse practitioners who made the first Sunday off from treatment feel like tropical vacation or who, while she wouldn’t promise I would be home for Thanksgiving, made it happen? Thank the physical therapist who came to me on the worst day of the transplant when I hurt, couldn’t keep any food in my body, had just finished another three hour infusion of magnesium and had moved from my resting bitch face to my “I swear I will cut you face” and cheerily asked if I am ready to hop on the bike? Or the doctors who have given me a chance to meet my grandchildren one day- a day far far into the future?

How do I say thank you to those who are no longer with us. To my fellow cancer patients who fought and fought who were worthy and loved and still died. Thank them for sharing their final days with me and who brightened as I improved even as they slipped away. 

How do I say thank you for those whom the South invented the phrase “bless their heart.” Folks who earnestly offered healing through crystals or remote regression therapy to right the injuries I received in the womb or who were convinced juicing was the cure. These folks deserve my thanks because while they may offer crystals or essential oils or, and I’m not making this up, beet juice, what they are saying is that you are loved, and you are important and the universe should heal you.

How do I thank the colleague who covered that work trip or the neighbor who brought over the meal or the prayer circles or those who lit the night or those who mowed my lawn or the personal trainer that helped you gain 8lbs of muscle or those that sent me a card every month just to say that I mattered?

Words ring hollow. And though not one of these people ever expected anything in return and were happy to give, guilt rises. Guilt because I can never repay the debt I owe. Even though none of these people ever expected pay back, and rather than seeing it as a debt, saw it as a reward-a chance to fulfill a mission, or took joy in giving, or paid forward a kindness they had received. And still, the guilt rises and I must find a way to give back, to absorb this love and sacrifice and find joy.

And so, I choose as my thank you to see cancer as a gift. I choose to see cancer as a harsh light that shines on the love I have been given. I thank cancer for the pain that cramped my muscles and screamed in my very bones because I now know the relief of a gentle hand and a loving embrace. I thank cancer for the fatigue so deep it trapped me for hours in the dark because when I woke up there was my wife to walk with me in the sun. I thank cancer for the nausea that sought to starve me because I now know what it is to be nourished by a neighbor’s meal. And I thank cancer for seeking to devour me from my marrow because it introduced me to the man my boy had become. A man who without hesitation said, “anything you need dad.”

Thank You for Making a Difference

This past week I spent some time in social media and here asking folks to give blood. This was the 6th year in a row that we’ve been part of an Annual Lankes Family Blood Drive in Central New York. We began (though my amazing wife Anna Maria deserves all the credit) the event after my first stem cell/bone marrow transplant. We wanted to use our experience for something positive. People giving blood saved my life and we wanted to give back.

Even though we’ve moved to South Carolina amazing volunteers like Michele McIntyre and Blythe Bennet and the congregation of the Holy Cross Church have kept it going.

We received the following email from Katie Stepanian, our amazing contact with the American Red Cross, and it shows just how many people you can help with your donation.

Thank you for all of your time and efforts with the blood drive this year at Holy Cross Church. Without your personal asks, your volunteer time before and after the drive,  and the support from Holy Cross Church, we would not have been able to meet our goal for this drive and the demand this month. 

From where I sit the event went perfectly, though I would love any feedback you have for me. Below are the stats:

  • Goal- 53 units
  • 43 scheduled
  • 56 registered
  • 8 deferrals
  • 2 turnaways (could have been self deferrals or walkins who could not wait)
  • 43 whole blood donations
  • 5 power red donations
  • 53 units collected (100% to goal!)

There were 7 first time donors!  I will put on my calendar to pull the list of presenting donors for you once it comes through which will be next week. 

I can’t thank you each enough for continuing to help the Red Cross connect with donors in the community. David’s drive is one of the highest producing drives in my territory.  Year after year it yields a significant contribution, and with the addition of these 53 units now totals 374 donations! This brings your total in potential lives saved to 1,122!  WOOO HOOO!!!  Most importantly, you are a reminder to the community about the importance of taking time to donate blood and the why behind our mission.

1,122 people benefited from your generosity. Thank you thank you thank you.

Please give blood if you can: American Red Cross.

How you know you need a blood transfusion in the days and weeks after a bone marrow transplant

Here is how you know you need a blood transfusion in the days and weeks after a bone marrow transplant.

It will start at 3am when the cocktail of fluids and supplements from the previous day’s treatment will wake you up with a strong need to pee. However, no matter the urgency, you can’t just get up. If you don’t slowly sit up and wait; then make sure you flex the muscles in your arms and legs first, you will stand up with too little blood pressure to push oxygen to your brain and you will fall back into bed (if you are lucky- if you are not lucky it will be the floor). Your heart will not provide enough force to push blood up against gravity and so it will pool in your veins, waiting for your major muscle groups to provide pumping action.

Once you get to the bathroom, be sure to either sit down to pee or place a steadying hand on the wall so you don’t sway or make a mess. There is a good chance the effort of the 10 foot walk will also wind you.

Assuming all that goes well, you will need to wake at 7am for the daily drive into the clinic. This will mean you need to fight to wake up. I don’t me deal with being groggy, or wanting to go back to sleep. I mean feeling like you are at the bottom of a 30 foot well, and you have to climb up and will your eyes to open at the top.

Once you’re up, remember your nighttime routine to sit up slowly. Next, as you dress don’t forget the compression socks. It turns out that the cells and proteins in your blood determine the amount of fluid that stays in your blood vessels, and how much is pushed out to soft tissues. Your proteins are out of whack, so your body pushes fluid into your ankles, swelling them, and painfully engorging your muscles. The socks provide a temporary reprieve squeezing the fluid around.

Now that you’ve made it to the clinic you have a very important decision to make. You enter the building on the ground floor. There are two ways to get to the clinic one floor above. You can take the elevator (the blessed blessed elevator), or you can take the staircase in the atrium. The physical therapist who deserves sainthood for the evil glares she endures with a smile from you, has made it very clear that if you don’t do some exercise, you will have real trouble in walking. You will hear her voice in your head sweetly telling you that stairs are the best exercise you can get right now. You will also see in the face of your beloved caretaker, that she is hearing that voice too.

The stairs are split in two by a merciful landing. The first half is easy…you will only need to rest here for a minute or two. However, and this is very important, at the top of the second half, to your right is a bench. Do not stop until you are sitting on that bench. It is very important, because at the top of the stairs you will be suffocating, and don’t want to fall down the stairs. Suffocating is not an exaggeration. The deep gasps for air, the empty feeling in your lungs, and the panic you are feeling is real. Without enough red blood cells to take oxygen molecules to your brain and body, you can fill your lungs as many times as you like, but it will not make a difference. You might as well be drowning.

But, it will pass. You will stand, you will walk, and you will make it the 100 feet or so to the treatment area. The nurses (the blessed blessed nurses) will draw vials of blood from an external central line that leads from outside of your body, through your chest, up to your neck, and then down to a point just outside the heart. Then you start to hope for less than 8. It is not always a hard rule, but in your mind you are hoping the hemoglobin count is 7.9 or lower. 8 is the threshold for a transfusion of platelets – red blood cells. These are the cells you need to breathe. These are the cells you need to keep from fainting. These are the cells that will keep you awake for more than three hours at a time.

Without transfusions of red cells and platelets in the days after a bone marrow transplant, you die. Without these transfusions in the weeks after the transplant, when your new marrow is growing, you may not die, but you won’t enjoy living.

Today, from 12-6 at the Holy Cross Church at 4112 East Genesee Street in Syracuse there is a blood drive. The blood you give today may help a bone marrow patient like me. It may help several infants in hospitals around the area. It may save a life of a patient in surgery. No matter who it helps, it will mean that a father or mother or child or grandparent a cancer patient a hemophiliac a friend or a lover will live. Please consider giving a gift you hopefully never have to think about to a person or who can think of nothing else.

Thank you.

Live in Central New York? I Need Your Blood

On June 4 from 12-6 is the 6th Annual Lankes Family Blood Drive at Holy Cross Church in Syracuse, NY. Ready access to blood has saved my life through my treatments for cancer. One pint of blood can save the lives of several people. Summer is also a high need time for blood donations.

There are spots still available for donors. The Syracuse community has been so supportive of me and my family. I am asking you to extend that love to cancer patients across the area.

Please call 1-800-RED-CROSS or visit RedCrossBlood.org and enter: LANKES to schedule an appointment. Also, there is good chance you can get a $5 Amazon gift card!

Farewell to My Dear Friend Nicolette

Nicolette Sosulski

Today the world lost a great librarian and I lost a great friend. Nicolette Sosulski passed away from a long and brave journey with cancer. 

She was an advocate for the profession and a great teacher. She cared deeply about serving those in need. She was also a tireless advocate for librarians with a belief that we could all get better. 

I have no higher praise to give than to say she was my librarian. If I had a hard question or wanted to check a crazy idea she was there. Beyond professional, she was dogged, passionate, and a genius navigating sources and working with people. When I talk about librarians advocating for our communities she is the face I see. 

We began this latest road with cancer together. She was always there checking in and sharing. Even as her options dimmed, she was there cheering me on. She was clear eyed about what was coming and had a strength I cannot fathom. 

Today I miss my friend.

UPDATE: her family has posted this obituary:

On May 15, 2019, Nicolette Marie Warisse Sosulski, loving daughter, sister and mother of two children, Peter and Nicholas, passed away from a year-long battle with lung cancer at the age of 56.

Nicolette was born on March 20, 1963 in Louisville, KY to Nicholas and Doris Warisse. She grew up in St. Martha’s parish and graduated from Sacred Heart Academy. She earned her Bachelor of Arts in English from Georgetown University, Washington, DC and her Master of Library and Information Science from the University of Washington, Seattle, WA. Nicolette found her passion in librarianship.  The American Librarian Association, in their memorial resolution to her said, “She was a motivated information professional: relentless about investigating a research question, had a gift for connecting people to information, had a real knack for identifying areas of need and developing plans, Nicolette was all that a 21st century librarian should be.”  Nicolette loved all things Southern which included cooking, literature, and big floppy hats.  She had a passion for animals, rescuing over a dozen dogs and cats, either finding them homes elsewhere or taking them in and loving them herself. Nicolette was an award winning author, a witty and phenomenal online communicator – she took online messaging and managing connections to a whole new level.  Nicolette was enthusiastic, mindful, continuously curious, loved and WAY smarter than anyone else in her family.

Nicolette is survived by her father, Nicholas and her mother Doris, her two children Nicholas and Peter, her sisters Jeanine and Michelle, and her cousins, nieces and nephews.

In lieu of flowers, memorial donations can be made to the Portage District Library, 300 Library Lane, Portage, MI 49002.  

A mass celebrating her life will be held at St. Joseph’s Catholic Church, 936 Lake Street, Kalamazoo, MI, 49001 at 1:00 in the afternoon on Thursday, May 16, 2019 with a reception immediately following. The family is also planning a celebration in Louisville, Kentucky that will take place over Fourth of July weekend. 

Health Update

David in front of Davis College

It has been a while since my last blog post (March 21). It has also been a while since I brought folks up to speed on my health in this blog (October 15th). So, this is going to be a long one…but I’ve tried to make it easy to skip through.

TL;DR version

  • My bone marrow transplant appears to have been a success and I am past most of the restrictions and limitations that came with it.
  • I return to work as director of the School of Library and Information Science July 1.
  • I am still limited in my ability to travel

Fast Recap

At the beginning of 2018 I was diagnosed with two forms of lymphoma (cancer of the lymphatic system): Follicular and Large Diffuse B Cell. I underwent several rounds of chemotherapy that put the cancer in remission. However, chemo has limited long term effect on the slow growing follicular lymphoma which inevitably transforms into a more aggressive form – Large Diffuse B Cell. 

On the advice of doctors in August 2018 I had a bone marrow transplant at the Duke Medical University and started a 3-month medical confinement in Durham for daily treatments. For those of you that may have a case of Déjà vu, this was my second transplant. The first was in 2014 for Hodgkin’s Lymphoma. The big difference was that the earlier transplant was autologous (using my own preserved stem cells and marrow) and this one was allogeneic (bone marrow from a donor – my son).

The goal of the transplant was to either kill any cancer remaining after the chemo (and there was a very high likelihood that the cancer would return) and/or to replace my faulty immune system that produced the cancer cells to begin with. A new immune system should be able to identify the cancer and kill it.

The transplant replaces my entire blood system. The result was a nonexistent and then very weak immune system. In late November I was able to move back home. In December I contracted an infection that sent me to the hospital and set back my recovery.

During my transplant and recovery, I have been working remotely, and Dick Kawooya has been interim director of SLIS. The whole of SLIS and the College of Information and Communications has been incredibly supportive during this time and I am indebted to them.

Since December I have been getting stronger, and my new immune system has been growing stronger as well.

Where I am Today

A bone marrow transplant replaces your entire blood system. Today most of my blood counts are normal or near normal. My immune system is not so much weak, as inexperienced. Colds won’t kill me, but they will hit me hard for example. In August I will get my infant vaccinations again (for the third time in my life). I still need to avoid big crowds and be a bit paranoid about cleaning my hands. I also tire easily. It could be another year before I find my new normal energy level.

While I am past the possibilities of acute problems with the transplant, I have run into some minor issues. Marrow transplants are the only major organ transplant that doesn’t require lifetime anti-rejection drugs, and I am off of those. However, there is always the possibility of chronic Graft v. Host disease. That’s where my new immune system sees parts of my body (or the whole thing) as a foreign invader and attacks it. So far this has only shown up as a skin rash and is treated with topical steroids. This happens because of UV light, and I have to wear sunscreen all the time [as an aside, I took someone else’s blood to keep me alive and I have to avoid the sun…I am a vampire].

It will also be at least 4 months before I should get on an airplane, and a few months after that before I can travel internationally. I am planning on being at ALA Annual this year in DC (driving), and hope to see plenty of friendly faces again.

On July 1 I will return as director of SLIS full time. I’ve already started going into the office a bit and Dick and I are doing the leadership handoff. Let me take a moment to point out what an incredible job Dick has done this past year.

The Future

At the one-year point in August I will go back to Duke for an evaluation. This will be a battery of blood tests, immunizations, possibly a bone marrow biopsy, and the first CT scan monitoring for cancer. It is easy to forget where this all started, but all of this was to give me the best chance to kill my cancer and “let you meet your grandkids,” (actual doctor quote). The general consensus is that all my lymphomas have been connected, and this donor transplant is about curing me of lymphoma for good.

Monitoring for cancer sounds a bit ominous. However, the majority of people with cancer recover and go on to lead normal lives and careers. So do heart attack patients, and stroke patients, and…you get the point.

I am anxious to get back to work. I love my SLIS team of students, staff, faculty, and alums. We have so much planned for the years ahead to improve society. Thanks again to all of you for your support, thoughts, and love during this process. I, and my family, will be eternally grateful.

So, there you have it. No Boring Patient book sequel, and this blog should get back to its regularly scheduled purpose of world domination through librarianship.

Health Update: Day +51

My last public update on my health and treatment was August 22nd. A lot has happened since then. Quick recap for those new to this blog: I recently had a bone marrow transplant to treat ongoing re-occurrences of lymphoma. In the past (2014) I had an autologous transplant where I was my own donor. This time my donor was my son.

Today is Day +51 after my transplant. I am full engrafted, meaning 100% of the DNA of my blood system is from my son.

The first few weeks of the transplant were difficult: little energy, nausea, swelling, pretty regular transfusions of red blood cells and platelets.

This was the first “period of danger” in the transplant. With no white blood cells, and no immune system I was on constant look out for fevers and infections. I was in strict quarantine.

The past few weeks have been much better. My new marrow is making blood cells and I have a new, but weak, immune system. I still have to avoid crowds but have been given permission to visit parks (I’m the one walking around in long sleeves, a brimmed hat, and a surgical mask) and have even been given a few days off from clinic.

I remain in confinement (actual medical terminology) near the Duke Medical Center. I still have to be very careful with the food I eat (everything straight out of a package or heated past 160 degrees).

I am now (and will be to about day +90) the second phase of danger. This is where we are in constant vigilance for signs of Graft versus Host Disease. My new immune system is there to fight off foreign attackers like viruses and bacteria. The problem is that the rest of my body has different DNA from my white cells, so there is a good chance the new immune system will attack my body at some point.

To prevent this, I am taking several anti-rejection medications. I will eventually end those though. Bone Marrow donations are the only transplants that don’t mean anti-rejection medication for life. Also, I want a little graft versus host, as I want the new immune system to kill off any cancer cells that may be lying around that my former immune system couldn’t see. So, it is a balance.

I will be in Durham well into November, with the hopes of getting home by Thanksgiving. That all depends on my good progress continuing. After Day+90 I may be home, but it will be at least another 90 days (and up to 9 months) until I can safely get physically back to work. So, I will be teaching class and working from home and travel is out.

This has been a difficult process to this point. I simply could not have done it without the direct support of my wife and mother as primary caregivers, and the amazing support of family, friends, and co-workers.

Thank you all for your support and kind thoughts.

Health Update: Being a Chimera and Framing my Son for Murder

Chimera Print

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.

Health Update and Professional Changes

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
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
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

My new Public Facebook Page: https://www.facebook.com/rdavidlankes/

A video on transplants from Duke