Wednesday, June 30, 2010

Meeting with Dr. Cheson: Latest Status

You may be asking (as my mom did), "Why is there a picture of the Iwo Jima Memorial of the flag raising on Mount Suribachi on your blog?"  Excellent question!  When I leave Georgetown, I go home over the Francis Key Bridge, through the city of Arlington, and down the George Washington Parkway to get home.  Everytime I take the onramp to get on the GWP, I pass this statue.  I've probably passed it 30 times or more over the last year and a half, and I've never stopped to see the memorial.  Wednesday was a beautiful day, I was out of my appointment before eleven, my lunch "date" with my friend Elena had been overcome by events, and I found myself with time on my hands.  So I stopped.  It is a beautiful memorial with several informative plaques around.  I learned that of the six men depicted (five Marines and one Navy corpsman), three subsequently died on Iwo Jima.  Anyway, it was a neat place I've been meaning to visit, and now I have.  It seemed like an appropriate pre-Independence Day picture

On the the biopsy read:

This is where we are.  I am not yet in remission, but we've beaten the living crap out of the CLL.  The marrow biospy yielded no visible structures associated with the CLL, and the flow cytometry--which measures things at the microscopic cellular/chromosomal level--show a less than 1% involvement of the CLL still in the marrow.  Consider that when this all started, my marrow was over 50% involved.  Consider also that for some patients, merely stopping the advancement of the disease is considered a win.  This is pretty good news, and we're not sure that the Revlimid has finished doing it's thing.  I still have enlarged lymph nodes, but these are significantly down from where we started.  I'm hoping for a comment from Nurse Louise to put this in some perspective for me.

Bottom line:  we are now in "observation" mode.  My next appointment is in three months.

Anyway, I'll soon be hitting you all up to sponsor me in Dr. Cheson's 50-mile Lymphoma Research Bike Ride this October.  Help me stay on this guy's good side.

Have a happy 4th.

Tuesday, June 15, 2010

Exercise in Frustration, Georgetown-style

Quick and dirty (and my fault (kinda)):  Had a 12:30 appt. with Dr. Cheson to go over the results of last week's biopsy.  Got there early and figured I'd have about an hour wait because of the time of day.  As a result, I had not arranged a backup pickup for Robbie.   By 1:00 I had discovered that the lady on the bench next to mine had an 11:30 appt and the three other folks around us shared my 12:30 slot.  At 1:35, the lady with the 11:30 was taken in the back and I had learned that I was in last place of the 12:30 folks.  By 2:15, I knew there was no way I was going to see Cheson and pick up Robbie on time.  Me?  Pissed?  I knew that Peggy or Kath or Mindy would have picked Robbie up, but I hadn't prepped Robbie, and I remembered how freaked Elena's son David had been when we once picked him up unannounced.  Besides, I wanted to register my displeasure the only way I could--by leaving. 

Fortunately, I did run into Jenny, the Trials Coordinator, as I was about to leave and got the unofficial word:  still showing progress, bad cell counts down in marrow and bone sample, but still present along with continued presence in some nodes.  So I'm better, but not in remission yet.

Jenny is setting me up with another appointment in a couple of weeks, so hopefully then I'll get the answer to "What next?"  You'll know shortly after I know.

[And to put things in proper perspective, a year ago today I was basically in an induced coma and on a respirator.  Comparatively, this isn't so bad.]

Sunday, June 13, 2010

Robbie did Good in Church Today

Someone at church suggested I blog this, so I will.  Today was the annual final performance of the church choir until September.  We performed our traditional final piece called "River in Judea", a gospel song we do only because Alan E. insists.  We did the piece as a post-communion offering, and against my better judgement, I brought Robbie over from the nursery before we performed.  After threatening Robbie with dire outcomes should he make noise during our performance, I brought him over. I told him he would not be allowed to play his new favorite Iphone game "Pocket God" if he made noise.  He agreed.   He took communion with the choir, then returned to our pew.  We sang (making only a few mistakes) and he was great.  After we finished, he said, in a voice loud enough for the entire congregation to hear, "Daddy, I love how you sing!".  When I joined him in the pew, he followed with the question, "Do I get to play Pocket God now?".

As we speak, he is playing Pocket God.  What can I say?

Friday, June 11, 2010

Happy Birthday

To all who helped get me through this last year, thank you for the gift of this day, this birthday.  Best gift I ever got.  (Notice I updated the profile).

Crossing into Idaho

Get your motor runnin'
Head out on the highway.
Lookin for adventure
And whatever comes our way...

Thursday, June 10, 2010

An Anniversary

A year ago today I was in the ICU at St. Mary's hospital, and was less than 24 hours from being transported to Georgetown for the fight of my life (literally). Tonight I'm walking with Robbie (well technically he's riding) on a sultry early-summer evening. This is better. Thanks to all of you who helped so much this last year. Gotta catch up to the Robster now.

Tuesday, June 8, 2010

At Georgetown

First, thanks to Kath and Peg for acting as stand-by Robbie-grabbers this afternoon should my schedule have gone south.  Turned out that their services weren't needed, but their willingness to serve is greatly appreciated.

It's said that the sense of smell is the most evocative, the most memory-invoking of the sense. As I sit here in a waiting room, waiting for my CT scan, I can verify. On the wall here are pump dispensers of Endure Advanced Care waterless hand sanitizer. On a whim, I used some on my hand. I am now on a olfactory magic carpet back to last Summer and the hell that was. It's weird, because even knowing the phenomenon doesn't help with the flood of angst that so unexpectedly accompanied that scent. And it's not stopping--I'm going to have to wash my hands to remove the smell and drive the monsters back underneath the bed. Tomorrow I go to see Robbie's school play, the play I left last year to go to the emergency room at St. Mary's hospital. Circumstances are quite different this time around, but the smell of the hand sanitizer brings the specters of those two week around. All the sudden, I'm anxious to get the hell out of here.

This morning's marrow draw went as expected.  The "Owiee" factor was a little higher than normal, but the doctor performing the procedure was nice.  For the "Nick at Night" viewer, the doc looked like the older sister of Victoria Justice from the "Victorious" series.  Very nice, very competent lady.  Once we established that we didn't need me to don a robe for my modesty's sake, I assumed the position and we went to work.  Only fly in the ointment so to speak was that I had taken asprin this morning, so I was a little more of a bleeder than would have been ideal.  Every time I showed the slightest evidence of sensitivity (not from an emotional standpoint, but from a physical) she nailed me with more lidocaine.  Good samples.

LATER, From home:  The CT scan was non-eventful, though we did have to add another bandage over my biopsy wound, as it had bled through. 

The schedule was tight on both ends:  dropped Robbie at 7:45, reached the check-in desk at 10:05 (for a 10:00 appt.), donated another 13 vials of blood to the clinical trial at the lab, and was being marrowed out by 10:30.  Got out of the CT scan by 2:30, in time to pick Robbie up at daycare at 4:30.

I'll go in next week to get results, but my gut tells me that we're still working towards remission, but that I'm not remissed just yet.  Not setting myself up with too many expectations.   Keep those prayers coming, though.

LOVIN' that Berry Smoothie

Better by the quart.

Saturday, June 5, 2010

Heading into New Jersey

Here's an action shot of me crossing the Delaware Memorial Bridge into New Jersey, on the way to the house of my friends, Gary and Louise.  Louise is a clinical trials coordinator in Absecon, NJ, and it was she who had invited me up to speak at a Cancer Survivors' Day event.  While there I got to catch up with their two lovely daughters, one a college girl just back from Summer in Italy, and the other a soon-to-be-highly-recruited high school rower.  Scary that I knew one as a four year old and remember when the other made her debut in the world.  My talk was very well recieved by the audience of about 60 who heard it.  Topic was "Why You Should Keep a Blog" and I referenced all of you (though not by name) in the talk.  I actually was invited to come back to address a different group later in the summer.  Gotta come up with a fee structure.

Liz is off on her big Motorcycle Adventure.  She's started a blog about it (copy cat) and I'll post the link soon.

Tomorrow is Biopsy/CT Scan day for me.  I have to get in touch with my emergency backup Robbie Pickup people in case I get stuck up town.

All for now.

Thursday, June 3, 2010

Medical Appointment Update

The marrow biopsy has been rescheduled for next Tuesday, followed by the always popular CT scan (mmmm.....Very Barry Smoothie), for 10:00 a.m. and 1:00 p.m. respectively.  I'll probably be contacting a couple folks about acting as backup pickup for Robbie Tuesday afternoon.