Wednesday, July 8, 2009

Back in Little Rock with renewed resolve...

I returned to Little Rock yesterday afternoon following four weeks or so in Los Angeles. The culture shock was palpable.

Nonetheless, weather here yesterday was nice (87 degrees, not too humid, sunny) and we are supposedly in for another day or two of that before the dewpoint goes haywire and the heat index takes off. By that time, hopefully, I'll be spending most of my time indoors.

Before reporting on Little Rock, though, I wanted to share some exasperation at trying to get lab results out of SH's office. Mind you, I last had blood drawn there on June 30th -- a week ago. I had called on Monday of this week, so six days after the blood draw, and left a message asking specifically for the M-spike, and saying that if I couldn't be reached on my cell phone, try my home phone, and if you have to leave a message, please just leave the M-spike data.

My cell phone had died by the time the woman called Monday night at 6:30. The message, which I retrieved early Tuesday, said "I'm returning your call. It's 6:30. I'll be here for two more minutes. Otherwise we can talk tomorrow." No mention of the data.

So I called the next day -- yesterday -- and left a detailed message, saying that I was travelling and my phone would likely not be on, but PLEASE leave the M-spike data. I landed in Dallas and checked voicemail as we were waiting for our flight to Little Rock. I had a message. "All your data is normal. Have a good day." I was ready to put my head through the plate glass window of the airport tram. I called back "I NEED, TO TWO SIGNIFICANT DIGITS, THE M-SPIKE DATA TO COMPARE IT WITH PREVIOUS FIGURES OF .27, .29, .32 and .30. PLEASE GIVE ME THE DATA TO THE HUNDREDTH OF A POINT."

FINALLY they called back. 0.32. Now, leaving aside that this ISN'T normal...why did it take so long for them to simply respond to my question? Grrrr....

Anyhow, although I hoped for some 11th hour improvement, the fact remains that I stopped responding to this transplant (or rather, received the full benefit of it) about a week after receiving it. Which brings us to where we are now: heading into consolidation with residual M-spike of 0.3 or thereabouts.

We ran into BB's wife and son at dinner last night -- BB himself is in Ann Arbor for some reason. We will likely all have dinner this weekend once they get their schedule worked out. I explained my concern over my remaining M-protein to BB's wife but what it boils down to is this: I responded to induction, so there's no reason to believe I won't respond to consolidation. I only have a little protein to eradicate. If I need a second cycle to eradicate it, then we'll do a second cycle to eradicate it. And if THAT doesn't do it, then I'll still have maintenance, although BB's wife seemed to agree that it would be better to have it gone before beginning maintenance therapy.

My first round of induction took it the M-spike from 8 to 4. All I need is to get from 0.3 to 0.0. They (well, one of the APNs -- who presided over my first transplant) say it's considered a success if a given round of treatment reduces the M-spike by 50% or more. So 8 to 4 was a success. My first transplant took it from 4 to 0.7 -- a tremendous success. The second transplant from 0.7 to 0.3. At least 50%. So if one cycle of induction takes it to .15, and another takes it to 0.07, that gets pretty close, and that's the least meaningful response I would expect.

I go back to what Dr. EA, a colleague of BB, told me when I was in the hospital: the response of the tumors as shown on the first post-Velcade pet scan was exactly what they hoped to see, and was consistent with a very good long-term prognosis. There's no reason I shouldn't get into remission. I just need to get myself there by hook or crook.

Today I pick up my scheduling packet, get blood drawn (huzzah!) at the infusion center where I can get a full set of labs (and results in less than a week!) and then tonight another PET scan. Tomorrow will be bone marrow and fine needle aspiration from the religious extremist. Unless he's out planning the bombing of a Planned Parenthood clinic somewhere.

More news as it becomes available. And thanks for taking a break from watching the non-stop coverage of Michael Jackson's funeral to check in! :)


  1. It's good to see your new resolve.

    Best of luck with the snake handler.

  2. Don't they have anyone else who does these
    FNA's? That guy gives me the creeps and I've never laid eyes on him. Make sure the guy who
    is administering the propofol doesn't drive a
    BMW and hasn't just flown in from L.A. I'm
    just sayin'! ;o)

  3. Michael who? Patton would be proud of you....

  4. OMG! I SO FEEL YOUR PAIN on getting simple blood results from our local doctor's office! Its absolutely infuriating! We have been so damn spoiled in LR that we just don't seem to "get it" when we return home and have to deal with "normal" healthcare! My husband and I wanted his WBC numbers to begin back on his Thalidomide/Dex regimen while we are home and the nurse REFUSED, REFUSED to give it to my husband! The Doctor had to do that. Well @#$#%#$!@$@!%%^@#$@#%#$@$@#!!!!! Like he has time to do that! So of course the next message we got was, "When I see you on your next appt!" These at home doctors just don't seem to want to work with us! It makes me crazy! No empowerment for the patient allowed.

    And yes the Humidity is STIFLING! I lived back east for over 30 years and am newly returned to No Cal and I LOVE the dry heat! There is no escaping the humidity if you are outdoors I'm afraid. Nothing will cool you off.

    Wishing good results for you on this trip to LR.



  5. Over 4 hours of blog-scrolling since I first heard the news of your epic MM battle (yes, Michael and I live less than an hour away but we may as well have been hiding out with aforementioned bin Laden in a cave in Afghanistan given that we knew nothing about this until Michael spoke to Graeme yesterday)- interrupted only when required for carpooling kids to summer camps/commitments - and I just completed reading every single word of this Pulitzer prize worthy cancerlogue.

    When he first met you at HBS, Michael said you were one of the most brilliant people he has ever met and now I have 200+ pages of proof and boy-oh-boy did cancer pick the wrong man to mess with. For anybody entering into this MM battle, this blog is nothing short of a cancer Bible...Nick, your copious documentation of your research into "bottoming out your options for treatment" will, literally, save others lives! And, I am certain, you have saved your own and will walk Parker down the aisle and have many years to bask in your health and the glow of the many lives of future MM patients who will be referring to this blog for years to come!

    Our prayers for your full and complete remission (M-Spike .0!!!!).

    With love, admiration and profound respect,
    Eva Johnston