Author: rdlankes

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.

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.

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.