Monday, July 9, 2012

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.

Monday, February 13, 2012

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.