Songs for Life

I was asked to be -- and agreed to be -- a judge in a project called "Songs for Life" which is an innovative effort to raise awareness of Multiple Myeloma and fund MM research, as well as research for other cancers.   The project was started by Jenny Ahlstrom who has poured a lot of time and energy into this and I'm happy to play a small part.

Contributors submit songs that are voted on by the general public, before they are narrowed down to those reviewed by the panel of judges for inclusion on a CD that will be released in the next few months (February 2015 is the target date).

When the album is produced, all proceeds will go the CrowdCare Foundation, a non-profit patient-driven organization that funds cancer research.

Jenny asked me to post the following -- there's still time to vote so if you want to listen to a bit of music in your spare time and support the fight against this disease, give the site a visit!

Which songs are your favorite? Vote for the songs you think should be included on the final Songs For Life album to help cancer patients and fund #cancer research. Last day to vote is November 30 at midnight! http://songsforlife.org/vote-2015-submissions-fb/

Happy Thanksgiving to you all!  I am once again thankful for my therapy, my doctor and his team, my supportive family and my friends, including all of you!!

Remembering Pete Dalis

This disease stinks.  Putting it mildly.

Peter Dalis was UCLA's athletic director for almost 20 years.  I became friends with Pete when I joined Bel-Air Country Club a few years ago.  He was on the membership committee.  I learned at that time that he had just been diagnosed with smoldering myeloma.  I thought "well, there's at least one vote in my favor in the admissions process!"  :)

Pete was very loyal to UCLA, preferring to be treated there rather than going to see a world-leading MM specialist.  I'm not sure whether the diagnosis wasn't as accurate or if he simply had challenging MM from a cytogenetic perspective, but whatever the reason, his health deteriorated rapidly over the past few months.  He went from looking great to looking very frail.  He wasn't able to join me at a reception I held with the MMRF at Bel-Air as he was in the hospital; I saw him after that and he looked like a shadow of his former self.  The disease was obviously taking its toll.  He said that he had tried Revlimid and there were too many complications or it wasn't effective; he said he had similar issues with Velcade.

I had hoped that I would be able to get him in to see somebody with real insight into how to treat his particular disease -- but to my shock and sadness, I learned that Pete died this past Saturday.

I didn't know him as well as I'd have liked, but in my interactions he was a true gentleman.  A person of sincerity, warmth, and profound integrity.

His obituary from the LA Times mentions MM as the culprit.  A very sad story.  My thoughts are with his lovely wife and his family.  I had hoped we would celebrate our collective victory over this disease; instead, I am left with a tragic reminder of how important it is to be seen by a true specialist and to get in front of the disease before it gets on top of you.

I'll miss you, Pete.

I'm good on paper, at least!

Just got the call back from my doctor.

No MM under SPEP, IFE is normal, light chains normal, IgG and IgA are in normal range, IgM still recovering from transplant (as expected), B2M normal, liver numbers on the cusp of high but that's where they always are (if I need a new liver in 30 years, it'll be a high class problem).

So the question remains: why is this flank pain, which I noticed during my workout this morning, still there?

I will be getting imaging in Arkansas in January, but it the pain doesn't abate in two weeks, I may jump the gun and get some done here.

Meanwhile, keep calm and carry on, eh?  :)

Kidney pain. Nothing? Or...

So after being cold-free for, I dunno, two years or something, the combination of kids running through on Halloween, everybody in my family being sick, a 36-hour cross country golf trip with little sleep and the germ exposure of four airplanes, and being lackadaisical with the hand sanitizer caught up with me.  I'm in the closing stages (hopefully) of a week-long bug that Tamiflu and Levaquin helped minimize.

One of the things I noticed was a pain in my right flank.  It hasn't gotten worse, but it hasn't cleared up, either.  Could it be a pulled muscle from golf?  Maybe, I suppose.  It's a dull pain, doesn't show up often, and when I notice it, it's not particularly painful and certainly isn't sharp, but it feels like a bruise and it feels deep.  Ribs?  Could be -- and that would likely mean a tumor.  Kidney stone?  Could be.  Ache from the random virus that is getting me down?  Could be.  Kidneys being impacted by light chains from recurrent disease?  Could be.

I recall I had this once before, although searching the blog is fruitless so either the search function here doesn't work as advertised, or I didn't write about it.  I had a pain in that area.  It was, if memory serves, a little worse than it is now, because I remember being prescribed Norco for it (Vicodin, essentially).  I went to the hospital, had X-rays and an MRI because I thought it might be a kidney stone, and imaging was negative.  Bloodwork was fine.  No cancer.  I went home with the Norco and a few days later it was gone.

That's hopefully what this is.  Random pain, maybe from the virus, maybe not.

So I went in to the doctor yesterday.  I've not been as religious about seeing him (versus simple labs and weekly visits) as I should be, because while GD is fine for carrying out BB's instructions, he's not a leader in the field and is unlikely to unroot problems that aren't commonplace.  And I figure I see BB 3X a year, and while I'm in complete remission (if not cured, more on that in a future post) that frequency seems fine.

Anyhow, he poked and prodded and slapped me on the back in a few strategic places and from that highly nuanced procedure we determined that it's not a kidney stone because I'd evidently have been shrieking in pain were it one.  (Note to self: check the bottle of Dilaudid and make sure it's not expired if I ever get a kidney stone.)

His answer: if it doesn't clear up in two weeks, I need imaging.

I'll get the full gamut of cancer markers back next week; if it light chain disease or secretory MM returning, we'll know then.

This does segue to the "am I cured" post I just mentioned would be coming up.  It occurs to me that the last time I had this pain, I wondered if it was a kidney stone, but it didn't occur to me that it could be recurrent disease.  I never had a fear that it might come back.

Those graphs under Eli Wallach's face in the post from a few months ago call that into question.

I also asked GD about reimmunization as I'd like to be able to travel with the family at some point and our efforts in having a "nice relaxing family vacation" over the holidays proved to be rather challenging given that I couldn't confidently travel to half the places that we were considering (e.g., resorts in Mexico).  GD's response was that he needed to check the protocol with City of Hope; this is what I meant when I pointed out that he's a good doctor but not necessarily a thought leader here.  I hesitate to schlep out to City of Hope for reimmunization advice, especially since I don't think they'll let you in the building until they've drawn blood and God help me I'm sick of that even though I still do it all the time.

Lastly, I'm giving thought to other tests that I might use to help me restore my shaken confidence in the curative protocol of the TT4 "Lite" Arm (the Standard arm is doing just fine; if I were in that arm, I'd be breathing easy right now).  These include deep sequencing and the HevyLite Assay, which my good friend SR tells me can be ordered by a doctor through LabCorp.  As she put it, the value of this is as follows:

HevyLite helps determine if your immune system has reconstituted itself. So, it tells you if your uninvolved immunoglobulins are being suppressed. And it indicates clonal tides when the involved Ig is out of normal range..in other words it detects the new clone long before relapse shows on IFE or SPEP and it tells you about the heavy chain intact immunogloblin long before SPEP as well.

If deep sequencing comes back negative, AND HevyLite comes back negative, AND the damn pits in my spine have gone away when I get imaging on them in January, AND BB shows me updated information on the TT4 Lite Arm that suggests a plateau exists versus the cliff in the data reported here earlier...then maybe I can close this chapter and get on with it.  :)

Until then, we enjoy every day, right?  Which means I ignore that pain and keep on golfing.

Have a good weekend, everyone!