Monday, January 14, 2013

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, 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.