Beyond the Bullet Points: PET Scans and Water

I tell you the following story of what happened to me today to:

  1. To amuse the twisted and snarky
  2. As a cautionary tale for those who seek to serve
  3. To let those following my health know about the results of my PET scan

Normally when you get a medical test, you get a result. Often times, these are nice and definitive. For example, this morning I had blood taken and I found out that my platelets were 17. That’s good, because two days before they were 7. You see what I mean about definitive. “Hey Dave, how are those platelets coming?”

“17, thanks for asking.”

Well, PET Scans aren’t always so nice. They require professional interpretation. A radiologist looks at them and says things like “appears normal.” Or “some indication of abnormality in the mesentery region.” This can be very unnerving. “Hey Dave, how’s that mesentery region?”

“Ah, you know, showing signs of abnormality.”

It is with this background that I can start my story. This morning I went to see my oncologist. As is normal, the first doctor to see you is not your doctor, but one of a seeming endless mass of fellows. It turns out this fellow I had seen before. She is the one that a year ago (almost to the day) told me that I had lymphoma and then kicked my wife out to do a bone marrow biopsy before the pathology lab closed. This was remarkably like “Hi, your husband is probably dying of cancer, now please wait in the lounge as I drill his hipbone with a very large steel needle.”

Anywho, “Bringer of Doom,” as my wife and I now refer to her, came in today, asked how I was feeling, and then stated that the PET results showed uptake in the abdomen, meaning that the chemo wasn’t working. Worse still, as my wife pointed out, it seems to have spread since the last PET scan didn’t show anything in the gut.

I will pause here for my more excitable readers to point out that this story does, as far as it can, have a happy ending…just wait for it.

“Last PET scan? Was that in May” asked Bringer of Doom.

“No it would have been October.” I responded attempting not to notice my wife’s tears welling up and a low refrain of “oh shit oh shit oh shit.”

“Was it here?” asked Bringer of Doom.

“No, it was at Brittonfield.”

“Oh, I’ll have to look at that in the external record. I only went back to November and I didn’t see anything. In any case, your doctor will be in soon,” and Bringer of Doom felt for my lymph nodes, listened to my lungs and left.

Now I would like to describe to you the immense awkward feeling you have when in a small examine room with your wife when you are told that your “salvage treatment” (actual medical terminology) is not working. You can’t lose it, or your wife will, and you have to be brave and not wanting to wail like a little girl amongst nurses you have come to know and like. I would like to describe that for you, but before I could figure it out there was a knock on the door. I had to have a social worker do an assessment of me for my insurance. By the way, best question asked? How do you cope with stress…answer shrug. N case the social worker is reading this, I would like to change my answer – sarcastic social media postings.

So the social worker leaves, and in walks my doctor, a new nurse and, of course, Bringer of Doom.

“So I’ve looked at the PET scan results and actually they look pretty good to me” says my doctor.

“Glurp?!” is what I am guessing I said…just imagine Scooby confused at something profound Shaggy just said and you’ll get the picture.

“Well, reading from October’s PET scan it is clear that all of cancer in the neck and chest, where it was growing, is now gone.” Said the angel wearing a lab coat. “What’s more, I’ll have to talk to the radiologist this afternoon, but PET scans always find junk in the mesentery region.”

“What is the mesentery region” asked my wife who was clearly now paying very close attention.

“It is the tissue and such that interlace the bowels. The PET scan could be picking up bowel activity, or inflammation. I’ll know more when I talk to the radiologist. The point is that I see this as very positive. The chemo is working. The question is now whether to do one more round of chemo to be sure, or move into the harvest and transplant.”

Now I put quotes around that last part like it is what the doctor said. Truth be told I know that was the gist of it, but a mix of relief and rage made the dictation a bit difficult. Relief that things were now looking up, and rage that we didn’t start at that point.

So I’m going to finish this story up in two ways:

  1. Where I am for my treatment and transplant, and
  2. Why this is a cautionary tale for those who seek to serve.

So, for my treatment, the doctor is consulting with the radiologist to look at the current and previous scan. If they are convinced that chemo has been effective, and the mesentery stuff is just ghosts, then we proceed to harvesting my stem cells and the actual transplant. It may be delayed by a week until my platelet count recovers over 50. If the docs are still undecided about the scan, or feel there is some cancer traces left in the gut, then another round of ICE, then the harvest.

So, good news? Yes. Clearest best possible news? No, but those are frankly pretty hard to come by in medicine of any complexity.

Also, be assured that we brought up Bringer of Doom’s delivery issues and were assured it was a problem that would be dealt with.

Which bring us to those who seek to serve: we (librarians, teachers, professors, doctors) often like to talk about “informing” as if it was a verb that means something. The assumption we make is that by providing more information faster, we can help people make better decisions. What’s more, there is an unstated assumption that information is like water. Bad information can simply be flushed away with good information. This is wrong.

It is wrong because no matter how much water you use to flush something it leaves a mark; it leaves an imprint that will color all the information to follow. I now have more doubts about PET scans, my treatment, even the current state of my health and prognosis because that was where I started.

But the view of informing and canceling out is wrong because it represents a detached, and clinical view of people. To inform sounds objective. It sounds like we present the facts, or some nuggets of data that is entirely up to those receiving it to interpret. Too often we hide behind this idea to somehow distance ourselves from the troubles of those we seek to serve. I am not saying this from one bad day with one doctor with bad people skills. Research shows us that how we get information and in what order matters.

Instead of informing users, we must see our job as helping a person to learn. Doctor, professor, teacher, librarian all can no longer believe that simply pushing information at someone and if necessary fixing it later is acceptable. When I learn, when I am “informed” it is more than my memory and reason you effect. It is my emotion, my needs, my image of self.

There is a responsibility for those in the professional services to see beyond a question, or a task, or an interaction, and into the person they seek to serve. This is why we do not have customers who can simply return an item they do not like. Nor consumers who vacuum up our output. Nor do we have users that might as well be reading off a glowing screen. We have students, and patients, and faculty, and members, and people who come to us with what seem like questions, but are really needs, aspirations, and dreams.

I can already see many of my librarian colleagues dismissing their importance. Cancer and PET scans are one thing, but all you have are hold requests, or finding books, or figuring out the right website for a class project. Look deeper. Is that book about changing their life, or their cancer, or escaping an abusive relationship? Does that web site represent the start of a new career, or is about a hobby an awkward teen sees as part of their self-worth?

I recall Betsy Kennedy, the director of the Cazenovia Public Library, talk about a program to give new books to poor kids. She talked about how one child upon receiving the book began to tear up. “It’s the first new thing that I’ve ever owned,” said the child. That was not just a book, but worth, meaning, hope to that child, and Betsy knew it and used it to create programs to help other needy families. When the families came for books for their kids, she and the other librarians and volunteers recognized the need for educational opportunities for the parents as well. She helped create GED programs located in food pantries for the needy of her region. She doesn’t serve readers, or patrons, she lifts up whole communities.

If all you do is stand behind the desk (real or metaphorical) and answer questions or inform – If all you do is lecture – If all you do is listen to a list of symptoms and prescribe drugs, then you are not doing your real job. Patients have better outcomes when they are part of treatment decisions. Students have better outcomes when they shape their learning. Members have better experiences when a librarian takes the time to get beyond the question to the real need. What we know may make us experts, but whom we serve makes us noble. It is not in your insight and expertise we find the true measure of worth for a librarian, lawyer, doctor, or teacher. It is in the success of the communities we serve.

If you know you can impact someone’s life, take care and take the time to know when and how to teach. And if you don’t think you can have that kind of impact? Then please understand that you may well be the Bringer of Doom and not even know it.

Follow Up: Had a talk with my oncologist and after consulting with the radiologist, she feels the PET scan is clean (if not clear) and we are going to proceed with harvest and transplantation…more on that on my Caring Bridge site soon.

Posted in Beyond the Bullet Points, Biography, Cancer, New/Participatory Librarianship | 19 Comments

Libraries as Community

“Libraries as Community” Information Resource Center Directors (branch libraries in US Embassies) from East and Central Africa, U.S. Embassy, Kigali (via pre-recorded video).

Abstract: As professional services (medicine, higher education) move to a more participatory approach, so too should libraries. This presentation discusses how the mission of librarians pushes libraries past documents and spaces to conversations.

Slides: http://quartz.syr.edu/rdlankes/Presentations/2014/Embassy.pdf

Audio: http://quartz.syr.edu/rdlankes/pod/2014/Embassy.mp3

Screencast:

Library a Community from R. David Lankes on Vimeo.

Posted in 2014, New/Participatory Librarianship, Presentation | 2 Comments

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: http://quartz.syr.edu/rdlankes/Presentations/2014/Wisc-Lankes.pdf

Audio: http://quartz.syr.edu/rdlankes/pod/2014/WiscScreen.mp3

Screencast:

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

Posted in 2014, Presentation | 4 Comments

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.

Posted in Beyond the Bullet Points, Cancer | 10 Comments

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 gharrison@ilsos.net, 217-785-7334 or Assistant Project Director Sandra Fritz at sfritz@ilsos.net, 217-558-2064.

Posted in Events | Leave a comment

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.

Posted in Beyond the Bullet Points, Cancer | 9 Comments

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.

Posted in New/Participatory Librarianship, Publications News, Uncategorized | 2 Comments