Tuesday, May 29, 2012

Quick update and an interesting article on curability...

Update one:  the no-Ativan lifestyle does return some mental acuity and energy, even if I am still largely exhausted from time to time due to irregular sleep patterns.  I took an Ambien on my last Dex night and got solid rest; I'm afraid to overdo it but one night a week is almost certainly harmless.  I was less sluggish than I thought I would be, though a large cup of joe probably helped in that regard.   I have never been a coffee drinker, but I must confess it did make a difference so I can see using it from time to time.  The prevailing medical knowledge at this point in time is that it's good for you (this changes constantly, it seems) for what that's worth!

The finger continues to heal and it seems like it is getting better day by day, though last night Parker looked at it and said "THAT is what you call BETTER?"   :)    It's still pretty ugly looking...goopy and red.  Looks like some skin is trying to form.  It will be four weeks tomorrow and it's not looking like it's going to be healed any time soon.   Additionally, the numbness in my thumb appears to extend to the forefinger (I have been brave enough to gingerly test for this) so that nerve impingement has yet to resolve.  I sent a photo of the finger and note of the lingering impingement to the surgeon who dug the cancer out, and no response this time (last time he said no worries, looks good, etc.) so I assume it is steady as she goes.  Will send him another picture in a few days' time.

After three years, have finally resolved to take Immodium with some regularity to attempt to establish some regularity.  By which I mean much less frequency.  I didn't want to put my GI tract in a tug of war between competing medicines but it's just become too much to deal with.  I probably should have done this a while ago.  I am just hoping things will return to normal when all these meds are done!

Lastly, I came across a very interesting article published in Haematologica, which is a European periodical.  It's a study done by two Spanish doctors.  It is notable because it says that 3-10% of autologous stemcell transplant patients can be considered to be operationally cured.  This is in line with Arkansas' results from Total Therapy 2.  Total Therapy 3 has been vastly more successful, and Arkansas claims cure rates in excess of 50%, and higher still for low-risk myeloma.

It's terrific to see another crack in the wall of the "incurability" facade...hopefully with more time and published data, more people will open their minds to the notion that aggressive treatment can cure this affliction.


I hope everyone had a reflective and happy Memorial Day!

Sunday, May 13, 2012

Plant vs. Zombie...

Another pop culture reference...Plants vs. Zombies is an extremely popular game for mobile phones.

As I tell the wife, the best jokes are the ones you have to explain!  ;)


I've been feeling listless for, oh, I dunno, six months or so.  I've been taking Ativan (Lorazempam) to help me sleep soundly.  It's worked pretty well...I don't wake up feeling like I'm the walking dead, as is the case with Ambien.  And yet I get a solid night's sleep.

Unfortunately...it does drain me of any will to DO anything.  I feel like any effort is too much.  I can, on a weekend, muster up a round of golf...though truth be told even then I feel like 16 holes is plenty.  That's not good news for somebody fairly young (43) and hopefully living every day to its fullest insofar as I am hopefully cheating death.

Turns out Ativan is essentially Valium.  That would explain it.  

So it seems I can either not sleep -- and be a zombie -- or take Ativan -- and feel like a potted plant.


I think I vote zombie, at this point.  It gives me more drive at work, even if I feel like collapsing from exhaustion.

In any case, a high class problem considering I could be pushing up daisies right now.

In other news, the finger hurts like crazy still, although it just now appears to be starting to improve.  The doc said it should show no signs of improvement for two weeks but I can see the flesh starting to try to fill in the gap were it was dug out.  I'm sure it will be another month before it is presentable but I'm glad to see something happening, given how painful it is.

There has been news in the last week about Revlimid being linked to secondary cancers, including carcinoma...I'm sure this was put in action by the hatchet job that quack dermatologist did to me (I have dubbed him "The Butcher of Encino") but the Revlimid probably didn't help.   More on that, perhaps, in the coming days.


Tuesday, May 8, 2012

A bit of finger...

Pop culture reference: that's the name of a brief little instrumental interlude on Black Sabbath's 1970 eponymous debut CD.

Good old Ozzy...once every parent's nightmare, now the staple of NFL background music and 8th grade marching bands everywhere.

If my friend Gloria B is reading this, hello!  :)

I digress.

So, clever post titles aside, I thought I would bring you up to date on the finger situation.

I went to Arkansas last week to have a Mohs procedure done to my right index finger.  In this procedure, a chunk of flesh is razored off and then sent to pathology.  They check the margins of the tissue to ensure that all the cancer has been cut out.  If the first cut didn't accomplish it, they repeat the procedure until the edges of the tissue are completely clean.

The wife and I arrived in time to have dinner with BJ, Dr. BB and his wife KB.  A wonderful time was had by all and BB did not disappoint.  We were eating outside when he and his wife arrived...he shouted a greeting which made his wife jump about ten feet in the air.  He had some interesting jokes about misuse of my finger and how that could have resulted in this condition.  But he then turned serious and asked who would be doing the procedure (a great doctor, SD, whom he confirmed was a good choice) and who would be reviewing the tissue.  He then called his friend who ran pathology and asked him to personally review the tissue samples, which is just another example of how extraordinary BB is.  I love that man.

The next day, they chopped and chopped.  It took four separate passes at it before they got the cancer.  I was staring at my finger bone (I think) at one point, given how deep the cut was.  Pretty gnarly.  They removed the nail for good (Jill said that they literally just pulled it back towards my wrist until it popped out...yuck).  I was given a lot of lidocaine by injection into the finger so thankfully I felt nothing...at the time, that is.

I had a comically large bandage on my finger:

I changed this dressing last night, after five days.  To say it hurt is an understatement -- it was EXCRUCIATING.

With apologies to the squeamish, here's what's left of the finger.


The nurse reviewed the photo and said it "looks fantastic."   I would hate to see what something that DOESN'T look fantastic is.

Anyhow, I am told 6-8 weeks for a full recovery and 99% chance that the procedure got all the cancer, so we'll see.  Right now it's VERY painful and I'm on a fairly steady diet of Vicodin, which I'm looking forward to discontinuing as soon as I can.