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Coming soon to Twitter: Robbies_Dad

Yep.  Dust off the shelves, sweep the floors, we're open for business again.  Which means my CLL, which had been quiescent since August 2011, has snuck back in.  So I'm starting the posts again.  As a nod to the times, I'll also be setting up a Twitter account, and--wait for it--will be tweeting my next bone marrow biopsy (currently scheduled for next Thursday).

How did we get here?  Yogaglo. Specifically, Yogaglo.com is a wonderful yoga website that streams real classes with real instructors into your home.  I discovered the site around Thanksgiving and it completely revitalized my home practice.  Nice you say, but how did that cause CLL to come back.  It didn't, it just gave me early warning I had a visitor.

There is a small lymph node on the left side of my neck that has served as tell-tale, my canary-in-the-coal-mine for my condition.  When my CLL was in full roar, this node would grow to the size of a large pecan.  If it was small, I assumed I was OK, and it has been small for 14 months.  Just after Thanksgiving, I was in the spare bedroom laying on my stomach following a Yogaglo class, when I noticed it felt like I was lying on my wallet.   My wallet was in the Master bedroom.   I rolled on my back and felt my belly; I could feel *something* about three inches by three inches in there that I could move around with my fingers.    I decided it would probably be a good thing to bring it up at my upcoming appointment with Dr. Cheson scheduled two weeks later.

At that Tuesday appointment, the lovely Catherine--an experience nurse practitioner--was checking me out ahead of my visit with the good Doctor.  She had checked for swelled nodes in my jaw, neck, and armpits and found nothing unusual.  She then shifted to my abdomen.  I have never seen her flustered,  but when her fingers hit my 'friend', she literally jumped back and said, "What the heck is that?"  Not the most calming of words.  Dr. Cheson came in, moved it around, then sent me to Radiology for a CT scan.  I spent the next two day Googling "abdominal mass".  It was not a confidence builder.  Catherine called that Thursday afternoon and shared somewhat sadly that my friend was a mass of lymph nodes and that the CLL was back.  I told her this was relatively good news:  better something I already knew than something new and exciting.  I was afraid it was stomach or pancreatic in nature.

So I'm back in the blog business.  I've been accepted into a really exciting clinical trial Dr. Cheson is running, details of which I share in an upcoming post.  Enough to say if you have to have a disease, make sure you have one of the best doctors in the world handling your case.  Even better if he and his staff actually like you.  I'm really lucky to be in the trial I'm entering (I signed all the paperwork today).  Happily, there's very little chance the drug being tested will cause a white blood cell crash, which is what set me up for Intensive Care in 2009.     The story of how I wound up in this trial is a good one; stay tuned.

About Twitter:  my twitter handle will be "Robbies_Dad".  I'll make sure it's up and running properly before I put out more info.  And I'm not kidding about tweeting the bone marrow biopsy.

One last and I mean this.  Don't spend too much time feeling sorry or sad for me because of this.  This is not a 'setback'. This is part of my life and my life is better than that of 97% of the people in the world.  I'm healthy (other than the obvious), I have a great medical team, I have insurance, and I am surrounded by people who care about me.  My life is pretty damn good, CLL and all.  So let's walk this path together for a while until things get boring again.

Because I promised Kim...When Worlds Collide

To a certain extent, Facebook has assumed the role this blog was originally intended fill.  Add to that, my medical life has calmed down significantly over the last three years (Thank you, Jesus), and it adds up to my dearth of blogging.  That said, I promised my friend Kim I would write another post, and given that Robbie is between summer camps this week, I find myself with the time and a minor topic about which to write.

First, medical:  I got my 3-month check-up on June 20th and got the "come back in three months" release.  Obviously, this is good news.  It's been just at a year since I finished my last round of chemo; I'll take that 3 months any day of the week.  For those new to the blog, understand that with CLL it's a question of when, not if, I'll have to start treatment again.  CLL is my friend for life, and I'm hoping for a long relationship.

I also found out that six month ago I got hijacked by the lovely Dr. Ujjani.  Dr. Ujjani saw me once when Dr. Cheson was out of town.  I assumed she worked for him and made my next two appointments with her as well.  I happened to bump into Dr. Cheson prior to my last appointment and discovered that she worked with--not for--him.  Basically, I had transferred doctors without being aware of it.  I like and respect Dr. Ujjani, and would suggest her highly to anyone, but I'm sticking with Dr. Cheson. He's done fine by me so far.

Now on to the topic:  When Worlds Collide.  I took a phone call this week from the president of a small company looking to provide basic aeronautical training to NAVAIR employees.  It's a good idea--one we've kicked around before.  Not for our aero engineers so much, but for the 'rank and file' folks for whom an basic understanding of how planes work and why some parts are more expensive than others might be useful.  Anyway, someone gave him my name as a starting point.  After our conversation, he said, "And how are you doing?"  Hmm?  That seemed a little odd--and a little personal.  He continued, "Before I called I was doing some research.  I googled your name and I read your blog.  I hope all is going OK with you."

My first response was almost indignation, which died out almost immediately as I turned the feelings into words:  "How dare you!  This is a professional call and we have at most a professional relationship! How dare you look up and read personal information that I've only made available to...anyone who has a computer...and knows my name...and how to use Google...and...never mind."  Fortunately that monologue took place entirely in my head; rather than making an ass of myself, I thanked him for his good wishes, assured him of my continuing good health, and promised to see if I could get his information in front of the right people.

Two years ago I spoke to a Cancer Survivors' Group in New Jersey about the value and power of keeping a blog.  It's easy to forget that once you publish something on the web, it's out there.  You lose all control over it.  Not that I regret anything I've written, but this week's 'surprise' underscored the point  like few things ever have.  I know--and have taken pride in--there are people I've never met who've read this blog and found comfort and solace.  I never stopped to think that they may not be the only 'strangers' tuning in.

Lesson which I share is that the world is very different that the one we once knew, that what goes on the web stays there, and that Life can surprise you every day.

A Friend Diagnosed and a Random Thought

A lady came into my office at the end of the day last Friday.  Now this lady normally is one of the most upbeat, happy people I know, but just then she seemed on the verge of tears.  It turns out earlier in the week she had been diagnosed with cancer.  May you never know the gut-wrenching fear that comes with that diagnosis.  I had to leave to pick up Robbie from school, but I did have time to ask "What have you got?"  She said she had been diagnosed with Smoldering Multiple Myeloma.  It was Stage 2.  "Stage 2?", I said.  "Come back when you have a problem!  I've been Stage 4 for three years."  I told her a diagnosis is not a death sentence.  That you can live and work and exercise and do most of the things you want to do.  We talked a little more and she went away a little less scared.  She dropped by today and we talked more.  She said I had made her weekend a lot better.  I gave her some of my perspectives and offered to check with Dr. Cheson to see if he knew of any colleagues who dealt with her condition (I sent that email a few minutes ago).  We talked about living with cancer and what different treatment options mean.  Sometimes just having someone to talk to, someone who has been down the road you're about to travel, can really help.  I like to think I helped Cathy today.  It reminds me why I started the blog and why I need to keep it up more regularly.

Since I'll be posting this link to Facebook, let me first thank all of you who routinely post the "repost this if you care" kind of cancer awareness posts.  Now I'll gently share this with you:  I always smile when I see the ones that say something to the effect of "You may want a new sportscar, or a new vacation home, or tickets on the 50-yard line.  I know people who only want one thing--to be cured of cancer.  Repost if you agree".  I want to--lovingly--let you in on a secret.  Most of us with cancer want the new sportscar and new vacation home, too.  For most of us cancer survivors (and that's anyone who has cancer and is surviving), we want what everyone else wants. You truly learn to live with--not in spite of--your affliction.  So thank you, truly, for the thought.  But if someone suggests giving me 50-yard line tickets, don't tell them "That's not what he wants!"  I'm that kind of greedy:  I want the cure AND the tickets.

The Evening Walk, as improved and documented by technology

As captured on my fabulous new GPS-enabled smartphone,  here in blue is the path of one of my two "normal" evening walks, a walk I haven't made in too many months.   The walk starts and ends at our house just under the grey bullseye.   Thanks to the free backpacking app I downloaded, I now officially know this walk I've been making since we moved here in 1996 is 2.6 miles long and it took me about 45 minutes.  I knew all that before, but somehow this latest technological validation makes it much more formal.

During fifteen years perambulating this circuit (and in the preceding decades of walking and musing), I have occasionally pondered the idea of "finding happiness", looking far out into the distance like happiness is a destination to be reached;  like it's a gleaming city whose glow can be seen just over the horizon--like Oz.  And like Oz, there would be no doubt in your mind when you got there.

It struck me tonight that this image of happiness is undoubtedly wrong and dangerously misleading.  The happiness I've always looked for is more likely already all around me, like jewels hidden in the long grass along my path, waiting to be discovered and plucked up.  It's ever-so-cliche, but it occurred to me that happiness should be the journey, not the destination.  You don't reach happiness--you find it.  But to find happiness, you have to be looking for it.  And you have to believe you deserve it.

Before every yoga practice, you are encouraged to set an intention for that practice--something you specifically want to focus on during your time on the mat.  Because practice can sometimes be challenging, I often set the intention of finding joy in every pose I attempt.   I find when I remember my intention I can smile even when my quads are screaming or when I'm falling again and again out of a balancing pose (any balancing pose).  I want to bring that concept off the mat and incorporate it more fully into the rest of my life.  Maybe that's my first resolution for 2012--find the joy.

Speaking of 2012, the little chime on my Casio G-Shock watch just told me that midnight is now in the rearview mirror, making these the first moments of the last day of 2011.  Let the journey continue.  Keep your eyes open.  Find the joy.


via mobile (then fixed via laptop)

Happy Holidays/Georgetown in December

Hi all.  Kim B. told me I have to start doing this again, so I will (I'm putty in her hands).  I'm constrained, because since I set up the blog, I've also added an @gmail.com account, and since Google has apparently appropriated Blogger, I had a hell of a time figuring out how to get to my blog.  I'll fix the mechanics tomorrow.

I went to Georgetown for my second checkup since finishing my last round of chemo.   The campus was almost deserted, with just a few students left taking finals.  I don't miss finals.  My first post-chemo checkup was back in October, two months after the end of the cycle.  Second checkup was two months after that (today).  Short version of today's checkup (and with a 6:00 a.m. yoga class tomorrow, there will be no long version):  my CLL, while not in remission, is still basically dormant.   I got three months before my next checkup.  So that is good news.

Robbie is out of school for the holidays and turned eight just last Friday.  Tomorrow is the second anniversary of Sunshine's departure.  We're pretty much staying put for the holidays, but may make a day trip or two.  I'll get into more detail and into more metaphysical musing later, but as I said I have a 6:00 am yoga class tomorrow, so that will wait.  Just wanted to write this to prove to myself that I still can.

I'll finally be buying a true smartphone next week, so hopefully I'll be able to include more photos in the blog.  Don't worry though--I plan to make very few of them of me.  Maybe I'll try a video blog (a Vlog?)

Anyway, a very Merry holiday season to you and yours, whether that holiday be Christmas, Chanukah, Kwanzaa, or Festivus.  Thank you for reading.  If you're new to the blog, check out June 2009--that was when the real excitement happened.