Health Update

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 15^th). 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.