The Bad, The Good, and The Great

“The Bad, The Good, and The Great” 2nd Annual Wild Wisconsin Winter Web Conference (via pre-recorded video).

Abstract: It is not the collection or array of services that makes a library great, it is the difference it makes in the community.
Slides: https://davidlankes.org/rdlankes/Presentations/2014/Wisc-Lankes.pdf
Audio: https://davidlankes.org/rdlankes/pod/2014/WiscScreen.mp3

Screencast:

The Bad, The Good, and The Great from R. David Lankes on Vimeo.

Beyond the Bullet Points: When will the Mission Die?

I asked my doctor how I would die. Her answer was that If this treatment didn’t work we had more treatments after that and another treatment after that and still more tries after that. And if all that doesn’t work no one dies in pain. None of this, of course, answered my question which is how does one actually die from lymphoma. It was, however, the answer I expected. No one wants to accept failure. No one wants to be part of a loss of hope.

To be sure, my path with cancer has had its times of lost hope when, as my wife and I refer to it, “I go there.” However, this is not why I asked the question. I wasn’t giving up. I didn’t ask out of despair. I wanted to know. I needed to know. I needed to understand because, for me, I need to know what I am fighting against.

I tell you this story because I have been talking with a few people I really admire who are asking tough questions that could also be easily mistaken for despair. They are questioning professional choices. They are, in their words, becoming cynical. They are “going there” and beating themselves up for it. They seem to feel that people who fight for progress, who are pioneers, aren’t allowed to ask those questions. For some reason questioning a mission is a sin and an admission of defeat. It is not.

I wrote before about using cancer. Using it to re-prioritize, to take a break. While I had hoped that my using cancer days were done, I find myself again facing that re-prioritization. This chemo is tougher than the last. I find it harder to concentrate. I have less stamina. Where the last chemo regime resulted in keynotes and a MOOC, this one is focused on treatment and teaching. This is not a defeat. This is a chance for a professional break and a useful distance. Rather than pumping out the next keynote, I can listen. Rather than pushing out a paper I can read beyond libraries. This is a necessary pause. I have had them before after the closing of AskERIC and after virtual reference went from hot topic to standard service. But that time lead to participatory librarianship and the Atlas. It allowed me to look deeper.

A pioneer and a professional should have a mission and seek to change the world. They will also encounter resistance. They will question the mission and they will question themselves. They will go there. Do not despair. Do not punish yourself for doubt. Do not be afraid to ask how that mission or how that passion will die. Because here is the secret. A good mission and a solid passion will not die easily.

Do you want to know the answer to how this cancer will kill me? It will kill me if I do nothing. It will kill me if I ignore it or if I feel the price of the fight is greater than the price of death. It is not. Changing the world is hard. The cost of the mission is high. It is only reasonable to ask how high and you can only know that answer if you honestly assess the cost of failure. If that cost becomes too dear, then perhaps you were meant to change the world another way.

Illinois Librarians Join NOW

Excuse the location based post, but ILEAD U is the best continuing education programs going. I encourage Illinois librarians to join up:

2014 ILEAD U Applications: Deadline Extended! Due Friday, February 14, 2014

The State Library will host ILEAD U: Illinois Libraries Explore, Apply and Discover, The 21st Century Technology Tools Institute for Illinois Library Staff at the University of Illinois Springfield on March 24-27, June 23-26 and October 27-30, 2014.

The ILEAD U Steering Committee is looking for participants, mentors and instructors to implement web technologies that foster community participation as well as develop leadership, innovation and positive change. Project ILEAD U will encourage both the experimentation with and building of participatory Web services and programs.

Do you have a technology skill or knowledge of technology tools? Be an instructor! Want to learn? Be a participant! Want to facilitate in a team environment? Be a mentor!

Applications are now available for PARTICIPANTS, INSTRUCTORS, and MENTORS until February 14, 2014, at http://www.webjunction.org/documents/illinois/ileadu/ileadu-applications.html.

Interested but single and looking for a team? Please visit https://www.surveymonkey.com/s/join-ILEADU to send your information and we will generate a list of potential team members.

An archive recording of the Statewide Day of Application webinar that was held December 4 is available online.

Teams that applied by the original due date will be notified about your applications by January 31, 2014.

For questions, please contact Project Director Gwen Harrison at [email protected], 217-785-7334 or Assistant Project Director Sandra Fritz at [email protected], 217-558-2064.

Beyond the Bullet Points: A New Year’s Wish

I have no more use of resolutions. Last year I resolved to keep the weight off that I had lost during my “mystery ailment” from the months before. I succeeded, but only because gaining weight is not a real problem during treatment for cancer. So for this year, instead of making a resolution I will instead make a wish for you. I wish for you to grow beautifully and gloriously old.

Cancer changes your perspective on old and aging. Some years I would dread my birthday. 35 seemed old. 40 was huge. Now I can’t wait to turn 44. Years like 50 and 60 sound like paradise: a goal to achieve, not a sign of inevitable decline or a label to avoid.

Stop dreading the coming aches and pains. Stop fixating on wrinkled skin and greying hair. To see another year, even if it is just one more year, is no curse, nor a milestone of decline. It is a victory. It is a license to stand proudly before the world and say “I am here. I remain. I matter.”

May we all grow old in the company of our family and friends. Let every ache be a testament to a life well lived. Let every wrinkle be a reminder that you survive and sustain.

Happy New Year.

Save Big on Expect More

Looking for that last minute gift for your favorite library board member, provost, or principal? Look no further. Expect More: Demanding Better Libraries for Today’s Complex World is now just $12 from Amazon…over a 30% savings for the season.

What are folks saying about the book? From GoodReads:
Fish

“An amazing little book that explicates what libraries should be and what we should all expect from them.”

“The author actually made this an interesting read about the future of libraries and what we should demand for them to be even better.”

“FANTASTIC”

“Library boards need to read it. Superintendents, principals, other administrators, teachers, parents, need to read it. Provosts, deans, faculty, and students need to read it. Community members, mayors, city councils, county decision makers need to read it. Library school faculty need to read it.”

4 out of 5 Stars on Amazon

4.5 out of 5 Stars on LibraryThing

Abstract of the Book:

Libraries have existed for millennia, but today many question their necessity. In an ever more digital and connected world, do we still need places of books in our towns, colleges, or schools? If libraries aren’t about books, what are they about? In Expect More, David Lankes, winner of the 2012 ABC-CLIO/Greenwood Award for the Best Book in Library Literature, walks you through what to expect out of your library. Lankes argues that, to thrive, communities need libraries that go beyond bricks and mortar, and beyond books and literature. We need to expect more out of our libraries. They should be places of learning and advocates for our communities in terms of privacy, intellectual property, and economic development. Expect More is a rallying call to communities to raise the bar, and their expectations, for great libraries.

Cancer Update: Stem Cells Are My Friends

8044261.2619859The short version:

In December I will begin a new phase of treatment for my cancer. I will be going through intensive chemotherapy followed by an autologous (self) stem cell transplant. This process will in essence “reboot” my blood system. The process will take approximately 4 months followed by at least a year of rebuilding my immune system. During that time I expect to keep working, though remotely. If you would like to follow the details of my progress I have set up a site on Caring Bridge, a web service dedicated to charting people’s treatments and recovery: http://www.caringbridge.org/visit/virtualdave

The very short version:

Dude! It’s like friken’ Star Trek where they blast away my cancer and bone marrow and then regrow the marrow using my own stem cells!

The long version:

I talked with my dear friend Sue last weekend who reminded me that for many, blogs such as these are their first brush with intensive cancer treatments. I know I have greatly benefited from reading the journey of others, so I feel I should do the same.

First, some background for those who may be joining the party late. In February of 2013 I was diagnosed with stage III Hodgkin’s Lymphoma. The normal treatment for Hodgkin’s lymphoma (also called Hodgkin’s Disease) is a form of chemotherapy called ABVD. This regiment is almost 30 years old and has a great track record of curing the disease. I went through 6 months of ABVD…that’s about 12 infusions. It was not fun. I lost my hair, my taste buds, and a fair bit of my red blood cells (anemia), and white blood cells (neutropenia). This meant I was tired and had to avoid infections.

The good news is that this course of treatment eliminated nearly all of my cancer. The bed news is that in cancer, “nearly” is not nearly good enough. Unlike many chronic cancers where the goal is control or remission, the goal in Hodgkin’s lymphoma is cure. So when a PET Scan and follow-up biopsy found markers of lymphoma, it meant there was a need to a second line of treatment (what oncologists refer to as – and I’m not making this up -“salvage treatment”).

After consulting with my oncologist and specialists at Upstate Medical University and the Dana Farber Institute, we’ve settled on autologous stem cell transplantation. It is a process that uses a “lethal” dose of chemotherapy to kill the remaining cancer. It is lethal in that it not only kills the cancer, but my bone marrow as well. My bone marrow will then be regrown from transplanted bone marrow stem cells.

The treatment begins with three cycles of a chemotherapy regime called ICE (insert Vanilla Ice joke here). Unlike my previous chemo each course requires 4 days in the hospital followed by two or three weeks off. Assuming these treatments shrink the remaining microscopic cancer (their words, not mine) into remission, the transplant center will then harvest my bone marrow stem cells.

This is done in a set up like dialysis where blood comes out through an IV, the stem cells are captured, and the rest of the blood cells go back into me. The stem cells are then frozen.

Note: I am having what is called an autologous stem cell transplant meaning we are transplanting my own cells. No rejection and no donor (but thanks for those who offered me their blood).

Next they check me into the hospital for the transplant itself. This 15-20 day procedure starts with a “lethal dose” of chemo. It is lethal because aside from killing the remaining cancer, it kills my bone marrow. 6-9 days later they transplant my now thawed out stem cells. This consists of simply sending them through an IV like any other blood transfusion. The stem cells find their way back to the center of my bones and start rebooting my blood system (to me this sounds like magic, but I’ve been assured science is still at play).

They do this in the hospital for two main reasons: 1. they have to give me red blood cells and platelets until I can make my own, and 2. I will have virtually no immune system and have to be on isolation. Even once my bone marrow grows back, my immune system will be brand new and have no acquired immunity. So things like chicken pox and polio are a real threat.

This means that even after I come home from the hospital no flowers (or mowing or gardening), no raw foods, and no visitors. While I’ll be able to go out after a few weeks for the next two years I’ll be immune compromised and need to avoid large crowds and sick folks. They even have to revaccinate me to mumps and all the childhood illnesses.

The good news is that I am going into this transplant process with a lot of positives. I am (relatively) young. The first round of chemo only left “microscopic” remnants of cancer (the doctor’s words, not mine). My first rounds of chemo were very effective. However, there is still a chance that the cancer may return. In that case it will be time for plan c, and then I’ll write an overly long post about donor stem cell transplants.

Now for some logistics. I have set up a site on Caring Bridge, a web service dedicated to charting people’s treatments and recovery: http://www.caringbridge.org/visit/virtualdave While I still plan on putting major updates here, and of course snarky quips on Twitter and Facebook, I won’t muck up those channels with the daily stuff (and whining…I predict a lot of whining).

Many people have graciously offered to help, and wonder how they can chip in. For those in Syracuse we will need meals, particularly when I am in the hospital for chemo and then the transplant. Anna and I are looking for friends to take the boys skiing/snow boarding when the winter hits. Once again, we’ll try and use the caring bridge for other needs.

Lastly, I need your understanding. For the next year I am going to be very much the Professor in the bubble. My time outside the house will be limited, and possibly masked. Both at the hospital and at home no flowers, no balloons, and limited homemade foods (for me, for the family it is fine). However, good books, good DVDs, and SciFi suggestions always welcome. I’ll also be only a Skype session away.

In all seriousness, the next few months are going to be tough. More hair loss, fewer taste buds, pain, and generally feeling like crap. I’ve been there, and I can do it again. Some have said that is brave. It is not. For me it is a simple matter of survival. I have no real choice. However, it is my family who have chosen to not only stand by me, but tell me bad jokes until I smile, held me while I ached, waited patiently for me to catch my breath on the smallest of hills, quickly cleared food when I’m queasy, and never let me lose hope. My wife is brave. My sons are courageous. My parents, brothers and sisters are fonts of boundless optimism and comfort. For those who want to help me, help them.

Resources to Learn More:

Great short video on Hodgkin’s Lymphoma

http://www.youtube.com/watch?v=L5EgmtwvK68&feature=youtu.be

Great web site on stem cell transplantation

http://www.bmtinfonet.org

My Caring Bridge site

http://www.caringbridge.org/visit/virtualdave

My new favorite funny cancer site

http://www.cafepress.com/chucklenut

The Mortal in the Portal or Why Almost Everything you Learned in Library School is Wrong

“The Mortal in the Portal or Why Almost Everything you Learned in Library School is Wrong” Digital Library Federation Annual Forum. Austin, TX (via Video Conference).

Abstract: Digital libraries must be active, human-driven conversations.
Slides: https://davidlankes.org/rdlankes/Presentations/2013/DLF.pdf
Audio: https://davidlankes.org/rdlankes/pod/2013/DLF.mp3

Screencast:

The Mortal in the Portal or Why Almost Everything you Learned in Library School is Wrong from R. David Lankes on Vimeo.

Community as Collection

“Community as Collection” iGroup Users Group Meeting. Singapore (via Video Conference).

Abstract: The future of libraries rest not in their collections, but in their engagement with the communities they serve. Libraries are learning institutions that facilitate knowledge creation. This presentation will highlight a new approach to library service and the role of librarians with the communities they serve.
Slides: https://davidlankes.org/rdlankes/Presentations/2013/Singapore.pdf
Audio: https://davidlankes.org/rdlankes/pod/2013/Singapore.mp3

Screencast:

Community as Collection from R. David Lankes on Vimeo.