Category: Cancer

Posted on

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 on

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 on

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

Posted on

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.

Posted on

No More Speaking Engagements for the Year…and Cancer

The short version: I am not accepting new speaking engagements for the next year.

The longer version: I am accepting no new speaking engagements beyond those I have already committed to, unless they can be pre-recorded.

The long version: On Friday I am having surgery to find out if a recent “suspicious” scan indicates remaining cancer. Hopefully, it is nothing. It could, however, indicate the need for additional treatment. In any case, it has become clear in the past month that I cannot simply return to life as usual following my chemo. To remove some uncertainty, and to prevent leaving folks in a lurch, I’m not taking any new engagements.

For now, the plan is to keep those few dates that I have accepted (assuming a negative biopsy). I will only accept new engagements that I can videoconference into, and where a recorded version of my remarks is acceptable as a back-up.

Last year I had to cancel too many engagements. I have organized conferences, and I know how hard a last minute cancelation is. Even if this biopsy is negative, I know that for the next few months (years really) it will be a wait and see situation.

I still hope to be involved in the field, and hope to travel to conferences. However, my focus is on my family and recovery first. I will let you all know how I am doing as well.

I will also never write an “all clear” blog post again…they appeared to be cursed.

Posted on

No Signs of Cancer

This morning, after 6 months of chemotherapy I had a PET Scan. The scan showed no signs of cancer. I am now switching from active treatment to monitoring for a reoccurrence.

I’d love to say definitely that I have beat cancer, but that is more a determination after 5 years of monitoring. So for now, I will say I am a cancer survivor. Chemo has taken its toll though and it will take a few months to get back up to speed and strength.

Thanks to all who followed my progress and for all the thoughts, prayers, and support you gave me. It has yet to really sink in, but it is a good feeling none the less.

Posted on

Personal: Victory through Surrender

This post is not about libraries, librarianship, or information science. If you are here for that, please skip it.

fightToday is my last day of chemotherapy. Hopefully it is my last days fighting cancer, but I won’t know that until a PET Scan in 3 weeks (and really for five years or so). I feel compelled to share my experience, or at least what I learned from the process before it is colored by an outcome. I feel compelled to do so, because so many others have shared their experiences online and I have greatly benefitted from them.

Here is the hardest lesson I learned in chemotherapy. I am not battling cancer. The chemo is battling cancer. Battling is the wrong metaphor. I don’t feel like I am on the front lines. No, I’m the home front. Once the battle is endorsed, I am the one at home sacrificing to support the war effort. Taking the rations and reductions as part of my duty in the fight.

The key, I’m coming to see, in beating cancer through chemo is not fighting, but acceptance. You must accept the drugs, and you must accept that the drugs are going to progressively take from you as much, or so it seems, as the cancer. You must accept that your legs will ache and weaken; that your breathing will constrict; that your bowels will constipate; that you will lose energy. You must accept that for the drugs to do their work – the true battle – you must accept a lack of control.

At the beginning it felt like a fight. I felt like I was waging the war with cancer, and screamed, “this line and no further.” But the answer does not come from cancer, it comes from the poisons that kill cancer cells, and hair cells, and stomach cells, and white blood cells, and the components of your every body part. It comes as an unrelenting slow darkness that crosses your lines, and keeps coming, and will keep coming so long as you accept the toxins.

One day you realize – after your good weeks, become good days, become good hours – this is the price you must pay to live. It is not a moment of fight, it is a moment of acquiescence. You must give yourself over to the drugs, and your loved ones, and God. And it is hard. It is, in fact, the hardest thing you have ever done. Your whole life you have succeeded through action, through your wits, and your muscle, and your determination, and your own capabilities. But not now. Now you must depend on Bleomycin that eats away your lungs, and Vinblastine that robs you of your taste buds and hair. You must rely on your wife to drive the kids. To win, you must surrender.

Surrender to the process, to the treatment, to the care. NEVER to the cancer. NEVER to the thoughts of death. NEVER to anything other than life and the future.

Then there is a final thought, a crucial insight that must accompany the surrender. If you accept the treatment, and the limitations, and the proxy battle, you can then focus on the other things in your life. You can focus on your son’s graduation. You can focus on your wife’s affection, and the love of friends. You can focus on your work, and your mission, and all the things that will be waiting for you after the poisons and the drugs, and the pain, and the limitations.

So my battle against cancer via chemo is now done. The next steps? Radiation if they still find cancer in one or two lymph nodes. Bone marrow transplantation if the lymphoma is still broadly distributed. But, hopefully, monitoring for recurrence and recovery- thats plan A.

I’m sorry, but there is no rousing end. There is no soaring metaphor for you to take into work, just a set of humble and heartfelt thank yous. Thank you to my wife and family – patient advocates, caring shoulders, microbiology consulting, entertainment, and a foundation for my life. To my friends and colleagues: from cooking to teaching to visiting, you made my life easier. A big thank you to my students for your patience with classes via Skype, and your constant ability to both question and innovate. You gave me energy. And to all of you readers and librarians. Your thoughts, prayers, fighting pictures, and pointers made sure that while my body waned, my mind thrived.

Now we wait…

Posted on

Percoset and Puppies

I spent the evening of my 19th wedding anniversary either in pain or cuddled up to my dog half stoned on Percoset while my wife looked on helpless as I ached. I tell you this because every time I post something about my treatment, or my progress through lymphoma, my Facebook page is met by comments about being brave or being in inspiring. I am neither. I am obedient, desperate to live, and have little choice but to bear the aches, shivers, tiredness, insomnia, constipation, hairlessness, muscle spasms, nausea, and randomness of chemo other than to die.

There is nothing noble about cancer. There is nothing ennobling about cancer. I think people seek to create some aura of sacrifice around it because unlike some diseases, it is random, and impossible to blame on the victim’s behavior. It is also scary, and we all hope that if we come down with cancer, we will act nobly.

Cancer does not make me noble. It makes me afraid and sick. It makes me every day make promises of redemption to my family, friends, and co-workers. “Next year, we’ll do our anniversary in Hawaii,” “next birthday we’ll have a big party,” “next time I teach I’ll pay more attention.” My life has increasingly become a promissory note; one conditioned upon survival.

In the past I wrote about using cancer not as an excuse, but as a motivation to engage, and live. What I know now is that excuse must be tempered by the realities of toxic chemicals and a race to kill the cancer before the treatment kills me. I have no doubt that I will live, and that I will make that trip to Hawaii, and that I will pay more attention, but that will not be the automatic result of cancer, or some ennobling trauma. That will be a choice, and that will be hard work.

I have been blessed in my career to come to a point where people I highly respect seek my advice. I have, over these months talked, and schemed, and commiserated with people in their own fights. They don’t fight out-of-control cell growth, or the side effects of drugs, but their own circumstances. A leader overrun by bureaucracy. A new employee discovering a work environment not living up to promises. A dear friend making decisions between jobs and family. A director faced with a staff unwilling to see the future. None of these are ennobling. None of these trials get the sympathy and unconditional sightings of bravery of a cancer diagnosis. Yet I have seen in all of these situations an opportunities to be noble, and brave.

Too often we look at the roles we choose in our work life as either necessities or reduce them to matters of salary. We forget that each activity we engage in, by choice, or by fate, is an opportunity to better ourselves, and be better than we thought we could be. Every encounter with out dated thinking or ignorance is an invitation to educate, not just walk away. Every bad situation is a call to either improve it, or leave it, and both options can be legitimate.

We too often reserve concepts of nobility for the few and the extraordinary. Yet there is nobility in the everyday, and in every task we take on. There is nobility in bureaucracy, there is nobility in the minimum wage, there is nobility in the entry level, and the home, and in play. It comes not from suffering, but in our ability to serve, and the cashing in of our IOU’s…sometimes waiting for a capabilities to return to do so.

Stop calling me brave. Come back in a year and see if my actions inspire, or ennoble. Until then, I will take your prayers and your food, and your well wishes. But mostly what I want is your stories of bravery. It is from those that I draw my strength.

Posted on

Personal: Use Cancer

This post is not about libraries, librarianship, or information science. If you are here for that, please skip it.

I am a scholar, a librarian, a father, husband, son, brother, and much more. Yet my public face is deliberately about my professional life. When I posted about my cancer diagnosis it was more an explanation of my cutting back on travel than anything else. However, I have been reading and benefitting from other lymphoma patients’ blogs and I am reminded that while there is an amazing universe of cancer information and support out there already, there is always room to enrich that universe and serve as a portal to it. So, while this blog will not chronicle my personal journey with the disease, I feel obligated to share at least what I am learning on the way.

Here is the only advice I feel qualified to give: use cancer. I don’t mean use it as an excuse to get out of obligations or things you don’t want to do. I don’t mean to use it in like some idealized country song to skydive and bull ride.

I mean use cancer as an excuse to talk to your thirteen year old about his life and get on the floor to build Legos with your ten year old. As a dear friend from my childhood once asked as we were sharing stories of new fatherhood: when did we forget how to just play. Use cancer to learn how to simply play again.

Use cancer to have a date night with your wife even if it is cuddled up in a hospital bed watching basketball and Netflix. Use cancer to sit holding her on the couch instead of the big comfy chair. Use cancer to remind yourself she needs to hear you laugh as well as know why you sigh. Find a song that makes you both cry together.

Use cancer to talk to your mother about God, and your dead father, and her fears and dreams. Realize how scared and angry and helpless and even guilty you would feel if it was your child with lymphoma and realize that is how she is feeling. Use cancer to be a better son.

Use cancer to learn. Learn how your body works and find that brother in law that can explain lymphocytes, platelets, and the reason you are losing your hair. And learn that if he does it while sending you pictures of naked mole rats and asks for pictures of your bruised ass to show to his freshmen biology class at the same time you are truly blessed.

Use cancer to teach. Use it as a way to make people aware of warning signs, yes. But use cancer to teach a friend or colleague how to talk openly about a disease, what questions can’t be answered, what questions are too painful to answer. Teach doctors that patients are more than conditions to treat and that diagnosis are much less painful than uncertainty.

Use cancer to see the best in people. See how nurses can do their job, teach, and comfort at the same time. Use cancer to take the time to realize as the doctor thrusts a steal pin in your hip for a bone marrow biopsy the nurse not only hands the doctor the right needle, but reaches out to hold your hand.

Use cancer to see that you are not alone. That the network of friends and colleagues and family suddenly go from an invisible web to a team that feeds you, comforts you, sits with you in the hospital at 5 am after a double shift, and loves you. See it in the parking attendant who for years you waved at and said goodnight to, one day stops you to ask if you are ok and upon the news of your cancer tells you he’ll be praying for you.

Use cancer to realize that if it is your children, or your work, or that network of family and friends, you will someday leave a legacy. A legacy that can only be built by your actions and decisions. Use cancer to hone that legacy, and act and decide toward what you will leave behind.

I have seen all the cancer slogans, and love them all. “Kick cancer’s ass.” “F@(k cancer.” “Cancer fears me.” I’ve been told that even at the beginning of this journey I am a “cancer survivor.” For me that one seems premature. But I am not a cancer victim. Yes I could die from this or some random virus I get because what little immune system I have left can’t fight it off. But that won’t be my legacy. Dying from cancer will not be my decision, nor will I learn to die. I will not use cancer to give up. Dying from cancer will not make me noble, anymore than a freak mutation of DNA makes me any wiser – unless I use cancer to become so.

Posted on

Beyond the Bullet Points: Irony and Lymphoma

Today I start chemotherapy. I realize for those who follow this blog that statement might come as a shock, it certainly does me. A few weeks ago I wrote about how I was in good health following seizures and illness in the fall. Perhaps the post was tempting fate.

Last week I was admitted to the hospital with a very low platelet count and in the process of finding out why the doctors discovered enlarged lymph nodes. The biopsy confirmed Hodgkin’s Lymphoma, also known simply as Hodgkin’s disease, a cancer of the blood. In essence my immune system was attacking my blood.

I would say this isn’t as bad as it sounds, but it actually is precisely as bad as it sounds. I can’t leave the hospital until my platelet count grows, and that will only happen by attacking the cancer, and my immune system at the same time. The good news is that a bone marrow biopsy came back clean. The other good thing is that unlike other cancers you may have heard of, enlarged lymph nodes are where this cancer starts, so it doesn’t indicate spread.

I have few answers for you (and since most readers of this blog are librarians I’m sure you’re all on PubMed now anyway). The good news is that at my age (finally something to make we feel young) there are excellent treatments and projected outcomes.

The big effect of my illness is that with a compromised immune system, and courses of chemo I will once again need to cut out travel. I don’t know how the treatments will affect me, but as always I have webcams and video conferencing to continue to spread the message of how librarians are radical positive change agents, and how communities are our collections.

I will certainly take prayers and good wishes, but this is no time for sympathy. I feel good. I have an amazing family, colleagues, and network of friends. I will beat this.