Walk On By

A few days ago, Sony announced that they were discontinuing production of the Sony Walkman.

My first reaction was the same as many peoples': They still make the Walkman? Not even, like, the Discman, which is pretty much obsolete now. But the cassette-playing Walkman?

Apparently so.

Many people mourn the loss. Like this writer. And I join them. Not because I still use a Walkman (though we have a cassette player in our 10 year old minivan that still gets plenty of use), but because of the memories I have of it.

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I remember the summer before my senior year in high school, going on a church trip to Martha's Vineyard. The whole time on the island, I tried to spend time with a girl I liked and I got nowhere. My buddy Dan and I finally caught up with her in Oak Bluffs, along the busy main drag. He and the girl chatted away while laid down on the steps of an old movie theater a few feet away, sullen, my Walkman seemingly blaring away. Dan turned the conversation around to me, and why she wasn't interested. "Are you sure he can't hear?" she asked Dan, who said, "No, he can't hear," knowing full well that I could hear everything. Turned out she was coming off a bad break-up.

Months later, it turned out that not getting involved with her was a blessing.

Thank you, Walkman.

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But what I remembered most was having my Walkman with me when I spent 10 months in Italy in college.

I was there for a semester, returned home for Christmas, and then went back, spending a month in Florence, taking classes all day at a language school to improve my Italian enough to survive taking an actual class at the University of Venice.

For that month, I lived with a family that I hardly ever saw, since they left the apartment early, and I came home late. One of the rare encounters I had with one of them came one night when I entered the dad's study. I thought he had heard me knock, but apparently he didn't, because I walked in only to catch him drinking whiskey directly from the decanter. He didn't offer me any, but did say, smiling, "Bush," referring to the then-current vice president and presidential candidate. That was pretty much the extent of our conversation over one month: Republican primary politics, captured in a single, whiskey-soaked word.

I'd wear my Walkman every morning after I left the apartment and walked along the River Arno to the Ponte Vecchio ("The Old Bridge"), where I'd cross the river, and walk a few more blocks to the language school. As I walked, I'd listen to tapes, a few brought from home, but most of them bought from bootleggers at flea markets in Rome and Bologna. The Smiths, INXS, David Bowie, Depeche Mode, Pink Floyd. All recorded and bought illegally.

But mostly, for some reason, I listened to Sting's Nothing Like the Sun. Somehow, for some reason, it gave me courage. Which I needed, partly because I spent too much time drinking to really learn much Italian, which made my language classes kind of tough, and partly because one of the other Americans attending this particular language school was the daughter of former Democratic vice presidential candidate Geraldine Ferraro. I wanted to ask her to have a gelato with me just so I could say I had "dated" her. But I never did work up the nerve.

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So, Walkman, I'll miss you. For some reason, my memories of you are tied up with things like drinking alcohol, U.S. Vice Presidential candidates (from both parties), and girls who wouldn't go out with me.

I'll miss you anyway.

Nice Video

Here's a link to a video from Tom Music, who is a member of my online support group.

Tom was asked to make a presentation for something called Ignite. This is a particular type of presentation in which the presenter has 5 minutes to enlighten the audience. Accompanying the presenter's talk are slides on a screen; the slides advance automatically every 15 seconds. You have no choice but to stick to the topic.

Tom talks about learning that he had lymphoma. In fact, he had "double lymphoma" -- an indolent type that had transformed into an aggressive type before it was discovered and diagnosed. Not real common, but not unheard of, by any means. He describes his initial reaction, how chemo works, and what he learned from it all. It's fast, but you can tell that Tom has a great attitude about it all.

Tom also has a great blog called Lymphomartini, which takes you through everything that he went through. The double lymphoma caused some complications, and he does a nice job of describing his feelings, his treatments, and how he handled it.

Another example of a fighter. Love those.

Cancer Humor

Finally, there's some new cancer humor out there. I had mined all of the available good stuff by about the 6th month after my diagnosis. Can't imagine why there isn't more cancer humor out there on the internet. You can find about 180 auto-tuned versions of "Charlie Bit Me," but it takes two years for someone to laugh at cancer? Not even a little radiation joke? Jeepers.

Anyway, comedian Sarah Silverman offers this video, which was featured in the Stand Up 2 Cancer special last month.

Good enough for a laugh.

Dr. R Visit

I had an unexpected visit with Dr. R today. I'll tell you the ending to the story right at the beginning: Everything's OK. But you can keep reading anyway.

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Monday morning, I noticed some swelling in my thigh. It was the same kind of swelling, in the same area, that I noticed last winter, and that prompted the need for treatment. Not nearly as severe as last winter, but the same kind of swelling. So I'm thinking maybe this is the beginning of the same thing -- internal nodes that are growing enough to block a lymph duct and cause a backup of lymphatic fluid, and that fluid backup leads to swelling in my thigh.

So I called Dr. R's office Monday morning to make an appointment. His secretary answered, recognized my name, and got to work finding me a time to come in. Nothing available Monday. Maybe something on Tuesday? 10:00? No, I have a meeting at 10:00. Already canceled three times. If I cancel again, my colleagues will kill me. Thursday at 1:30? Or maybe later? No, same problem. No meeting for me, but all Peter and Catherine have orthodontist appointments at 2:00, and all three kids have something going on later on Thursday -- basketball, dance, soccer.

The secretary was wonderful about trying to get me in as soon as possible. But I tried to explain that at this point, the swollen thigh, and making an appointment, was more of an inconvenience than a worry. I wasn't feeling so desperate that I needed to see the doctor RIGHT NOW; I just wanted to get in to see him at a time that it wasn't going to mess up too much of my very busy schedule. She laughed. And we decided that it's probably a better attitude, feeling inconvenienced, than feeling like I need to see the doctor immediately.

We settled on Wednesday at 11:15, which meant I had to cancel my 11:00 class.

Very inconvenient.

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Naturally, in the 48 hours until the appointment, I started looking at the next step. Will we just go for Rituxan again? The last time I saw Dr. R, he said he wouldn't rule out Rituxan completely. That would be nice, in some ways -- I know how tolerable this treatment is. But inconvenient: it would mean canceling my Friday class for four weeks. Maybe six or eight.

Maybe Dr. R will go for Treanda? This is actual chemo, but with a much better toxicity profile than, say, CVP or CHOP: rarely is there any hair loss, and while there's typically some nausea, my support group friends say it usually lasts for only a few days. But Treanda is given on a 21 day cycle, with infusions on day 1 and 2, then nothing again until the second round, day 22 and 23. This can go on for up to 8 rounds. That's 24 weeks -- six months. That makes it slightly less inconvenient than Rituxan: I'd only have to cancel two or three classes for the rest of the semester, and maybe some at the beginning of next semester. But that doesn't account for the potential nausea or other side effects, which could make things unpleasant for a few more days each cycle....

Inconvenient, inconvenient.

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The visit is kind of anti-climactic: When I got to Dr. R's office, it turned out he didn't even ask for blood tests. When I made the appointment, I told the secretary that I wasn't in any pain, and the swelling wasn't interfering with anything (and really isn't all that noticeable if you aren't looking for it). So after his physical examination, Dr. R said, "I'm really not that impressed," which is a funny expression he uses a lot. He means it in the literal sense of "This isn't leaving an impression on me," not the more typical meaning of something like, "Swelling? You call that swelling? Come back when you have some real swelling."

But, actually, that's pretty much what he said. Compared to the swelling I had in the winter, this is nothing. My thinking was, it's not exactly nothing, it's the start of something, so let's get to it before it becomes something else.

But he wasn't convinced that it really is something. Or that, if it is something, it isn't something we need to worry about just yet. I changed my workout routine recently -- maybe that's it, some swelling from a muscle pull. Or maybe it is related to the lymphoma, but the level of swelling I have right now is actually about where it was when I finished my Rituxan last winter, so it's where we would hope to be at the end of treatment, not the beginning, so why start treatment?

I understand his thinking. He's always had the philosophy that with an indolent lymphoma, we don't treat until we absolutely need to. And right now, we just don't need to. Maybe this is nothing. Or maybe it's the start of something. But it definitely isn't at the point where it needs to be treated. In fact, I have an appointment that was already scheduled for December. He said if I wanted to, I could even move that back a while, since I've seen him now, and won't need to for another three months. Which is good, when you think about it. He's not worried. But I'm keeping the appointment anyway.

I get his thinking, and, I guess, I agree. But now it's just more watching and waiting, and that sucks.

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Dr. R said he was sorry he couldn't give me anything more definite. I told him it's been almost three years of the same, and I'm kind of used to it.

On the way home, Isabel told me she's more worried about how I'm doing mentally than physically. My blood pressure was up today. I was feeling a a little of that stress dizziness this morning. But I think I'm OK. It helps to know the doctor is not too worried.

I asked Isabel how she was doing with all of this. She told me (English teacher that she is) that she wishes we could just settle on a story:

When we first got the diagnosis, she said, the story was about Fighting This Thing and Beating It. That's a pretty common story for a cancer patient.

And then, that wasn't the story anymore. Within a few days, we decided on watching and waiting. So the story became Living Our Lives as Normally as We Could And Trying Not to Worry.

Then that changed last winter. The story became Let's Push This Thing Back, which is different from Let's Beat This Thing, because we know it's not going to be beaten, not with Rituxan.

And now the story is changing again. It's back to Let's Keep an Eye on This Thing.

People who read books, said Isabel, get used to the comfort that a good final chapter brings. The characters and the plot and the conflict that were introduced in chapter 1 get all wrapped up in the final chapter.

But this book doesn't have an ending. Worse than that, the story keeps getting changed in the middle of the book. It's not a sad story, and that's good. But none of the stories seem to have an ending. That's not as good.

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And so we go back to the book, and figure out which story we're going to tell ourselves this time.

We'll deal. We always do.

(And I'm feeling fine.)

NHL

The National Hockey League has teamed up with the Leukemia and Lymphoma Society on a campaign called "Hockey Fights Cancer."

Of course, the campaign is geared toward Leukemia, the most common childhood cancer. And I certainly wouldn't begrudge anyone doing research on kids with cancer. But, gosh, how could they resist hooking up with lymphoma, especially on the Non-Hodgkins end of things?

NHL/NHL?

I couldn't have resisted....

Open letters

More from Betsy de Parry.

Betsy has a column that appears in the online version of the Ann Arbor newspaper. She's replaying her experiences as a cancer patient, which she originally published in her book The Rollercoaster Chronicles.

Last week, she wrote "An Open Letter to Oncologists Everywhere." It sums up what most cancer patients think and feel about their oncologists -- that we want to trust them, but we need some assurances. For many of us -- maybe most, maybe all -- this is the single person we're trusting with our lives. For some, that trust is more desperate. For others (like me) that trust is still important, but we have the luxury of a little more time to build that trust.

Here's Betsy's letter (the original appears here):


Dear Doctor,
Here we are, you and me, our lives connected by cancer. My cancer. Under the circumstances, I’m really glad to have you in my life, and I want our relationship to be very, very long and very, very good, but since I can’t find a manual on how to build our relationship, I’m guessing that, like any good one, it has to start with trust.
But trust takes time, which we don’t have, so I have some things to ask and say.
First, just what am I trusting in you? That you’re brilliant, cool under pressure, experienced, knowledgable and up-to-date on the latest miracles of modern science for my type of cancer? That you won’t be too proud to call in colleagues or send me to them if you get stumped or run out of ideas? That you’ll always be honest with me no matter how hard it is for you or me? That you’ll help me set realistic expectations without ever stealing my hope? That you’ll be my strength if I’m too weak to be strong? That you won’t give up on me if the going gets rough and it looks like I won’t be one of your success stories?
Do you understand that it’s hard enough to put my trust in you, but even harder to put blind faith in the people I can’t see but on whom you rely? Like the pathologists who look at tiny pieces of me or the radiologists who interpret pictures of my innards. You may know their credentials, but I don't.
I get that you went to medical school to learn how to identify and treat disease, not to listen to me blather on about how cancer is more than a physical problem. That it’s really personal. That it sweeps us patients and our families into a tempest of confusion, fear, frustration, vulnerability and isolation from the healthy world. I’ll try very hard to check those emotions at the door when you and I visit, but if they creep into the examining room, is it too much to ask you to recognize that I’m not just a collection of cells that needs to be fixed while you work to fix my wayward cells?And Doc, surely you know that your sophisticated equipment can’t see the parts of me that make me who I am. And I am not my cancer. No machine can identify the parts that make me love and laugh. And none can calculate how very afraid I am. Of what lies ahead. Of dying. Of pain. Of medical procedures. And of becoming a number in a bureaucracy where no one will care whether I end up running a marathon or being turned over in a bed like a piece of meat on a rotisserie. Could you occasionally share my fear and shore up my hope?
Doc, I’ve tried to put myself in your shoes, but I can’t imagine how, day in and day out, you see humanity at its weakest and still find the strength to help us. I’m just glad that you can. And I know I need much more from you than you need from me, but I’ll do anything to help you help me, if only you can squeeze out a little time to teach me how to be a good cancer patient in addition to everything else that I ask of you.
Neither you nor I can predict the future, Doc, and I don’t expect you to do more than is humanly possible. But may I trust you to treat my future as if it were your very own?
Respectfully,Your Patient

A few days later, Betsy got a response. Here's Betsy's introduction, followed by the letter from a local oncologist/cancer researcher (again, the original appears here):


Dear Readers: In response to my letter to cancer doctors last Tuesday, Dr. Gary Hammer, world-renowned adrenal cancer specialist at the University of Michigan Comprehensive Cancer Center, wrote this very beautiful and moving letter to cancer patients everywhere. Dr. Hammer expresses what those of us who are lucky enough to have doctors like him know: that by sharing our illnesses — no doubt surrendering their own comfort to do so — the physician's healing power transcends the science of medicine to help us heal in ways that no medicine ever could. I am deeply grateful to Dr. Hammer for giving us this rare view of the doctor/patient relationship and honored to share it with you.
Betsy

Dear Patient,
You have asked questions about the unique aspects of the doctor-patient relationship. I will attempt to answer them as well as share my perspective on illness.
Life is indeed defined by relationships — feeling understood and feeling connected in our relations is trust.
You ask what you are trusting in me. Trust is earned. It is fair for all of us seeking care to expect competence, it is fair to seek excellence, it is fair to want the best. It is right to demand respect. It is right to demand honesty.
You ask that I not be too proud to call in colleagues if I run out of ideas. The Hippocratic Oath, a verbal decree by doctors to honor and respect human life, speaks to integrity. "Do No Harm." My interpretation of this most powerful phrase is that we must not be wrapped in solitary ego and hence filled with the imposter syndrome, afraid of being found out that we are fallible, imperfect and not all-knowing, afraid of what we don't know. A good doctor knows what he or she doesn't know, is not afraid of that fact and discloses it humbly. Owning our limitations is freeing and honors our shared humanity. Consulting with colleagues and other specialists who know more than me about a particular situation is absolutely essential and happens every day.
You ask if I will be honest with you without stealing your hope. Honesty and hope, at times, seem to be mutually exclusive reflections of imminent death versus certain cure. Rather, they are our forever present and forever fluid experience of our life with illness. I will honor both.
You ask if I'll give up on you if the going gets rough. A person doesn't "give up" on another person. While I might give up on a given therapeutic approach, I will never give up on you as a person. I will fight alongside you. I will surrender alongside you, but you — and only you — can decide if, when and how to engage your life, your experience of illness and ultimately your death.
You wonder how to trust members of my team whom you will never meet. The only way that you can feel confident in this dance is to trust me and our team. And it is a team. I promise to hold your best interest in the fore and to represent you to the team. Know that while I cannot formally speak for others, I will demand the very best from those I consult, from those on our team, from those we together entrust with your care.
You ask if I will treat you as more than a collection of cells that needs to be fixed. I reject the concept that doctors must disengage to provide "objective care." What does it mean to be objective anyway — cold, impersonal A+B=C? What good is that? On the contrary, conscious and emotional engagement not only facilitates healing and/or acceptance in the ill, it opens a space in the caregiver as well. In that vulnerable space where spirit mingles, life is transformed for the suffering, and life is transformed for those who bear witness.
You ask me to share your fear and you wonder how I do what I do every day. Perhaps the most frightening words a person might hear in his or her lifetime are "You have cancer." This truth revealed fractures our reality. It challenges our relationship to our inner world, forcing us to re-evaluate who we are.
However, embedded within this experience lived is a gift. The little-known secret is that the gift is not just for the afflicted but also for their entire circle of relationships, including spouse, children, friend and caregiver alike. The only requirements to receive this unique communion: vulnerability and presence.
As a physician engaged in the care of people with a particular rare cancer - where those under my care almost always die — I am thankful for the sharing of truths that have been unveiled to me by these men and women in this, their most vulnerable and internal sanctuary.
In this place of finding themselves dying, brave people have let me into their space where three truths seem to be unveiled again and again as defining gifts of sacredness. These truths can be embraced as three reflections of the word "presence:" conscious engagement, the experience of present time (the razor-sharp now) and the gift of emotional authenticity.Through these patients, I have come to an understanding that if we are fortunate to actually have time while we are ill, and we are brave enough, what happens as our vanity, our beauty and ultimately our physical identity is stripped away is that we are granted a chance to become our own sacredness — as it becomes all that is left.
Sadly, when people die suddenly, they rarely have the luxury of such time, such a place. But equally as tragic is that most folks never risk to venture to this vulnerable place while living when they do have time. Having our own death close by in life — be it through illness or conscious reflection — sharpens our internal lens by stripping away all that is not present, all that is not presence.
I thank these lovely people for helping me begin to see. It is indeed my experience with deeply reflective and engaged people suffering with cancer that is becoming, for me, a touchstone for such conscious intent.
While the unique bond between a doctor and a patient has often been described as a polarized relationship of doctor gives and patient takes, doctor talks and patient listens or patient questions and doctor answers — this is just silly. Trusting comes when both feel the presence of the other — and hence know the truth of the other.
Finally, you ask if I will treat your future as if it were my very own. Such is the truth of shared experience. I hear you and I see you.
My very best regards to you in this difficult time,
Your Doctor

Gary Hammer, MD, PhD, is director of the Endocrine Oncology Program, within which are the Multidisciplinary Thyroid and Adrenal Cancer Clinics, at the University of Michigan Comprehensive Cancer Center. Hammer holds the Millie Schembechler Professorship in Adrenal Cancer. He is also the director of the University's Center for Organogenesis.

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Dr. Hammer does a nice job, doesn't he? I feel lucky to have a doctor in whom I trust, who seems to care about me as a person (we always spend the first 5-10 minutes of the appointment chatting about kids, baseball, living in Boston, whatever), and who has actually used the words "do no harm" in describing his approach to treating me.

Lucky indeed. Thanks Betsy and Dr. Hammer for an exchange that sums things up so well.

Web Interview

I mentioned this a few weeks ago: Betsy de Parry, author and lymphoma advocate, is back with round two of interviews with lymphoma specialists. Last week, she posted her interview with Dr. Rebecca Elstrom from Cornell, who discussed Indolent Lymphomas (including Follicular NHL).

The webcast lasts about an hour, and its as good an introduction to the current state of indolent lymphomas as you'll find online. Very update, very thorough.

Betsy has a strong interest (to put it mildly) in RadioImmunoTherapy (in fact, this week's webcast will deal with that topic), and it was nice to hear a few minutes devoted to that subject in the Indolent Lymphomas webcast. I'm looking forward to hearing a full hour on RIT later this week.

Well done, Betsy. Keep up the good work.

Post #400

Wow. Hard to believe this is my 400th posting to Lympho Bob.

Sorry it's taken so long to write something since my last post. Ironically, I'm getting behind in keeping up with this blog because of...another blog.

This semester, I'm teaching a course called "Social Media and Professional Writing," where I'm teaching a bunch of English majors all about the ways writing is changing because of blogs, social networks like Facebook, Twitter, YouTube, and other interactive websites. It's been incredibly fascinating to teach.

And incredibly time-consuming, too: plans that I had made for the course in June are evaporating because all of this technology changes so quickly. In fact, I sat down two hours ago to work more on this post (which I had started last Friday), but got an alert that Facebook had made a major change to their "Groups" function. That change wiped out the plans I had made for how students will use a wiki for their collaborative report in a few weeks, and so I needed to watch a video on how the new Facebook Docs feature works so I can introduce it to the class on Friday, and then I had to post the video to my class blog and invite comments from my students......

Oy. It's been like that all semester. Sometimes I am literally learning about stuff 5 minutes before I teach it to them. It's a very different way of doing things for me. But like I said, it's been a lot of fun.

And it all started with this blog, 399 posts ago.

When I was diagnosed, I knew what blogs were, sort of, but I had never created one before. But I had one ready to go, and had posted a few times, before we even told the kids about the lymphoma diagnosis. I've been looking back at those early posts. It was very different then. They were much longer, more emotional, more personal. Mor desperate.

And over time, things changed. I got less fearful, and so did the people reading. The posts became less about me, and more about the good research I was reading, and about the good things the kids were doing. Comments tailed off some.

Which is fine. The blog still serves as a way to let people know what's going on for me. and every now and then it gives me a chance to unload about something important and emotional.

But writing a blog also opened up a whole new world for me professionally. I started the blog in January 2008. The following June, I went to a conference and learned a lot more about blogs and other social media and how they are written. By September, I was applying for a sabbatical to do my own research all of that stuff. A year later, I was deep into that research. And now, in February, less than a month after I celebrate my 3rd cancerversary, I will be presenting at a conference on writing, to scholars from 12 different countries, on what I've learned. A whole new professional world has opened up, and I've been re-energized by it all.

And what's really great about all of that? It's gotten me thinking excitedly about what I'm going to be teaching and researching for the next 25 years or so.

And that's the good part, becaue it wasn't too long after I started this blog that I was wondering just how long I was going to be around. I think now that it's going to be a long time.

So, pleaese be patient with me and the blog. I know I've said I'm going to be better about keeping it up. In the past, you might have started to get worried when I didn't post for four or five days, thinking maybe I was sick. Now, you should flip that worry around, and remember that when I don't post for a while, it's because I'm focusing on the next 25 years or so.

There will be plenty of time to post between now and 2035....