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.

Cancer Update

Here is an update on my health. After 6 months of chemo, a new biopsy shows that the cancer is not gone. This, of course, is not good news. There are however, several effective treatment options still open, and over the next few days I will be going through them with my doctors and family to determine the next steps.

I still hope to continue to teach and present via Skype where I can. Once again I don’t want to disappear or fade away. I hope to keep folks updated here and continue to make a contribution to my school and the field. However, it is clear that I just can’t plan too far in advance. Note the use of terms like “hope” instead of “plan to.” It seems every time I post something rosy and optimistic about my health something goes wrong.

I am worried, particularly about my family and the toll this will take on them. I have asked much of my family, friends, and colleagues, and I must now ask for more.

There is no joy in cancer, save the love of friends and family it makes evident. You all have been so supportive during this process. If you want to know how to help: please help my wife, give blood, and keep the faith.

Changing Literacy Changes Literacy Organizations

“Changing Literacy Changes Literacy Organizations” Unspoken Conference. Utica, NY.

Abstract: Changing views of literacy changes literacy organizations like libraries. This presentation for a non-library audience discusses these changes.

Slides: https://davidlankes.org/rdlankes/Presentations/2013/Utica.pdf
Audio: https://davidlankes.org/rdlankes/pod/2013/Utica.mp3

Screencast:

Utica from R. David Lankes on Vimeo.