Friday, April 26, 2013

Well, I made it through.

Anesthesiologist stabbed me four times in the damn port trying to start an IV and had to eventually start on the old fashioned way.  Otherwise, uneventful.   I will find out the results in a week.

Evidently, when coming out of anesthesia, I asked the doctor "did you find Jimmy Hoffa up there?"

Good stuff!   Have a good weekend, all.

I survived the night, and why I explained Che Guevara to my 10-year old

So, first thing's first, I'm alive.  All in all, it was bad but not THAT bad.  The reality is, all the "cleansing action" induced by 10 days worth of laxative ingested in a two hour period wasn't any worse than the pre-Vegas GI problems I had, and was probably LESS severe.  So the prep for today's diagnostic wasn't as bad as the problem which the diagnostic is attempting to uncover.

Hurray.  I guess.

I heard from one helpful commenter that her husband had an issue which turned out to be lymphocytic colitis.  Doesn't sound fun.  However the treatment was testosterone and it went away; meanwhile, I am getting testosterone already.

Also on yesterday's call, I asked Dr. RO (head of MM at MD Anderson) if he had experience with post-transplant patients having GI damage and he said that it can happen and he would be concerned with amyloidosis -- which I'd heard bandied about a lot as a related condition to MM but never researched.  It's the body's inability to absorb protein and it can cause the GI problems I've got.  Now, I *have* to assume UAMS would test for this...and yet nobody brought it up in my previous "what's up with all this diarrhea" conversations?

They say two data points equals a trend.  So the trendline here is there could be something materially wrong.  Or maybe it's nothing.  Who knows.  But it's enough to make me a little trepidatious.  It's enough to make me interested in the outcome of these tests.

Four hours and counting to the procedure...and I'm a teensy bit hungry.  I ingested half a bottle of gatorade throughout the night to replace some electrolytes, which means I took in about 100 calories yesterday.  Truth be told, it's manageable.  Although I did have dreams about food -- two of them, actually.  And the caffeine headache is a now a bit of a nuisance, since I'm in the four-hour pre-procedure window where I'm not allowed to drink anything either.  

So on to the levity.  Anticipating the worst from last night's circus act, I got out of my work clothes when I returned from the office and donned something comfortable -- sweatpants and a T-shirt that I normally wouldn't wear.  Last night's was a hilarious one that I bought one time after some of that gin that I referred to yesterday.  Aaah, tipsy online shopping, where we would be without you?

Hilarious, right?  : )

Not that I'm some right-wing nut, but after all, this guy was a mass murderer and people are starving in North Korea.  Kim Jung Un, if you are reading this: YOUR SYSTEM DOESN'T WORK.  PUT DOWN THE MISSILES AND PLAY NICE WITH THE OTHER KIDS.   Wooly-eyed college students might benefit from thinking about this slogan, too.

Anyhow, my daughter was standing in front of me in the kitchen and it dawned on me that she was reading this.  So I found myself having to try to offer simplified explanations of who the man was and what communism is and the irony of the T-shirt and the reason the slogan was funny given that recurring idiom.  She got absolutely none of this.  But, darling girl that she is, when she learned that I was having tummy trouble she said "that's killing me...that makes 100 million and one."

What a sweetheart! :)

Thursday, April 25, 2013

And it begins...

So I will keep one blog post to chronicle this mess, rather that clutter the blog with hourly updates.

I took a vicodin, anticipating that (1) this is gonna be uncomfortable, and (2) I'm gonna be nauseous and probably not be able to keep anything down later, so I better get this in my system.

About to ingest the first 8 ounces of this rocket fuel.  Then another 8 ounces every 20 minutes.  Gah...awful sounding already.

I did something like this many years ago in college -- 1.5 oz shots of beer every minute for 100 minutes.  Followed up by shots of vodka for those left standing, with one shot per minute.    It did not end well.  At all.  In fact 25 years later I still don't like vodka.  Gin, being the only thing I didn't drink in college, is now the only thing I like.  Well, that and scotch.

As much as I would like a robust discussion of fine spirits to serve as a diversion / procrastination tool, I cannot tarry any longer.   Bottoms up, people.  Fire torpedo one.  6:05PM.

Well, the good news is that stuff is pretty tasteless.  Firing torpedo two now.  6:27PM.

6:51.  Firing torpedo three.   So far, only issue is mild headache from NOT HAVING EATEN IN 24 HOURS.   How did Gandhi do this, I wonder?  :)

7:05, about to fire torpedo four.  Getting full.  Of water.  Starting to be reminded of those stories about how you can't drink a gallon of milk, or a gallon of apple juice, or crush an egg in your hand...or something like that.  In any case...glug glug glug.  Here we go.

7:10.  First rumblings.  Need to pee like a racehorse.  Eye on the prize here...only four more glasses to go and I have 15 minutes respite before I have to chug another one.  I have a feeling the fun is about to start, though...

7:26.  Torpedo five swallowed.  Feeling a little queasy although I'm not sure if I'm waterlogged or if it's the medicine or just the vicodin-on-an-empty-stomach.  Two mammoth belches have emerged.  It is time to venture into the bathroom.  By the way...sure looks like a hell of a lot of water left in that big pitcher...

7:52.  About to swallow torpedo six.  Am going to conduct measuring experiment as I'm sure there's gotta be more than 64 ounces between what I've swallowed and what is left.  Stuff has started to work, I'll leave it at that.  Comment of my good friend Scott noted.  Glad you're out there, pal.  Between this and the NFL draft I'm not sure what's more thrilling to follow in real time...  ;)

7:56.  Experiment confirms mis-measurement and an extra 8 oz in the pitcher.  While this might seem inconsequential, nausea is setting in and I could barely get down that last slug of water.  I doubt I will be able to do the extra 8 oz.

8:12.  About to fire down torpedo seven.  Nausea is becoming an issue and there's too much left.  No way I'm ingesting more than the 64 oz...which is probably the breaking point even moreso than the amount of the colon-blow that's dissolved in the water.  However, if I only get about 85% of that crap in me (no pun intended) it may just have to do.

8:40.  No way I'm finishing the rest of this stuff.  There were about 10 cups, not 8, in the jug and I'm only drinking 7, so I will only have 70% of it in me...which means I'll only have taken 10 days worth of laxative in two hours instead of 14.  This will have to suffice.   If I have another teaspoon I'm gonna throw up and that will do nobody any good whatsoever.


As for the impact of the digested has been almost non-existent to date.  The waiting game is gonna be a blast, I'm sure.

"You're putting WHAT, WHERE?" Also, another CureTalk panel today.

Hello folks.

Those easily offended may want to skip this one.  With that in mind, the non-offensive part is that I'm participating in another CureTalk panel today with some familiar panelists and Dr. Orlowski from MD Anderson.  We have some good questions teed up.  The one I am most interested in asking relates to the IMF's Black Swan initiative and whether this is tantamount to an admission on the part of the IMF that some people are being cured of Myeloma today.

Okay, crossing the rubicon into PG-13 territory.  What can I say, if I can't laugh about this stuff, I'd cry so I choose laughter.

While the "what the hell is happening to me" stage of dysentery was cured by the Vegas trip, the low-grade "am I ever going to have a solid bowel movement again" stage continues unabated.  When I expressed to the GI specialist, Dr. LJ, that I simply had to get things under control for the Vegas trip, he doubled me up on Immodium and gave me a powder -- cholesterium -- which supposedly helps and also plays some role in cholesterol reduction (which is a good thing for me as I have high cholesterol).  The physician's assistant JA in Arkansas suggested I try this, but when I brought it up to my primary care physician Dr. PZ, he said it was an ineffective way of reducing cholesterol and I should go back on the Lipitor -- the prescription to which indirectly led to my diagnosis more than four years ago.  So I may return to that drug -- I've been giving my liver a respite but the cholesterol has crept back up into the 230 range, mostly because of high triglycerides, so I'll need to restart the Lipitor soon.

Anyhow, when I saw Dr. LJ he prescribed the cholesterium and I'm not sure whether it was that or the doubling up of Immodium but they helped somewhat.  I eased off them, and the diarrhea returned (though not as horrifically as it was pre-Vegas).  So there is still a problem.

To determine exactly what the problem is....requires an upper and lower endoscopy.  I swallow one camera, and the other one goes in another entrance.   Hence the title of this post.  Fortunately, I'm going to be unconscious for this.  As long as they don't leave anything behind and I'm unaware, I'll be fine.  I have heard from someone, however, that the recovery room consists primarily of older men groaning about being bloated followed by deafening flatulence.  I hope that I will quickly recover from the effects of the anaesthesia so that my time in said recovery room will be limited.  Sounds like a real slice of Heaven.

But it is not this, dear readers, that has me concerned.  It is the next 24 hours.   Even though there can't be much in my intestines to being with, I've gotta go through an industrial strength car wash.

That means (1) I am not allowed to eat anything for the next 24 hours, and can drink only coffee, tea and clear liquids; and (2) I am expected to ingest AN ENTIRE CANNISTER OF THIS STUFF OVER A TWO HOUR PERIOD VIA 8 OZ. GLASSES OF LIQUID EVERY 20 MINUTES.

Note the fine print there: 14 doses.  I have to have FOURTEEN DOSES in a two hour period.   By the way, this photo doesn't do justice to the size of the jar -- it's about six inches tall.

Dr. LJ's printed instructions inform me that the forced ingestion of this much in rapid fashion will be followed by at a minimum two to three hours (or more) of crippling nausea and diarrhea.

I am reminded -- as anybody under 50 reading this surely will be -- of the following.

Once again, the bottle I am taking is larger than the one Jim Carrey dispenses in this clip.

For men UNDER 50 (the same ones laughing at the clip, most likely) -- ask not for whom the bell tolls.  You'll all need to get this done soon enough.  I'm just getting mine out of the way a few years early.

And with that...I'm off to starve myself.  

Tuesday, April 9, 2013

And the cure for horrific dysentery is...VEGAS?!?

I have just returned from a weekend in Vegas for the Final Four.  This trip is a recurring tradition with some friends and was planned long ago, so even though I felt pretty crummy the past couple of weeks, I was determined to go.

The trouble began about ten days ago.  I have always had GI issues while on Velcade, but I'd taken a couple of weeks off in preparation for the Bone Marrow Biopsy that I needed to have done in Arkansas (Velcade monkeys with the bone marrow and if it is in the system it can lead to inaccuracies in the testing).

I had not yet resumed the Velcade because I was taking the family away for a couple of days before Easter and I didn't want to experience the GI issues (pain, gastroparesis -- difficulty digesting, etc.) while we were all away.

Unfortunately, we went to dinner in San Diego at a Mexican place and I felt immediately awful.  Nausea, vomiting, and severe diarrhea.

The severe diarrhea persisted -- worse than usual.

I was (and remain) concerned that all this treatment has done damage to my innards.  I was in so much pain over the Easter weekend that I thought I was going to need to go to the ER for pain management and to find out what was wrong with me.  I knew it couldn't be something really bad like stomach cancer because my PET two weeks ago was clean.  I called my primary care physician's office over the weekend and they suggested in admit myself to the ER; I got ahold of BB's physicians' assistant and he said I needed to get an upper and lower endoscopy; I got ahold of my local oncologists's office and they said to just take a lot of pain killers and deal with it on Monday (this would have been a week ago yesterday).

So I took the pain killers, waited it out, and thought about what it might be.

Since I had recently been on antibiotics, I thought it might be C Diff, a nasty bacteria that forms in the gut if there isn't enough "good bacteria" to offset it.  Myeloma patients can get this and it's very enervating and potentially pretty bad news.   It could also be Crohn's Disease, which is related to immune system problems.  It could be other things as well.

I got a referral to a gastro enterologist and made that appointment for last Thursday.  Meanwhile I got in to see my primary care doctor on Tuesday AM.  He thought it was treatment related, might be C Diff, could be Crohn's Disease but thought it was unlikely because "you would look sicker than you do."  So...we ran a bunch of tests.  Not the fun kind.   The kind that you take at home and then bring back and that require gloves and vials of goop and basically it's a debasing experience I wouldn't wish on anybody.  Blech.

Anyhow, I then went to see the gastroenterologist, who was a remarkable guy named Dr. LJ who actually knew of BB because years ago he helped invent a flow cytometry test that was used by BB who was, at the time, at MD Anderson.  It's a small world after all, as my employer points out.

The bottom (no pun intended) line is this:  (1) tests eventually came back negative for everything including C Diff, (2) I'm getting the endoscopy on the 26th, and (3) SHOCKINGLY ENOUGH...even though the horrible GI problems persisted for several more days, I went to Vegas and came back and now, I feel...fine.


My close friends have known me to make the observation:  "Go to Vegas healthy, come back sick...go to Vegas sick, come back dead."  To this I might have to add..."Go to Vegas with intestinal problems...come back cured."

It's as though all the germs saw the environs of smoke, booze, gambling, etc. and panicked, fleeing my body.

I'm thinking there's a business here...I remember vaguely in my youth my grandmother went on some health tour where they brought a bunch of tourists to squat in a Uranium mine someplace...either that or to see a statue of the Virgin weeping in some grotto someplace.  And the tour guide charged money.  I could organize tours of Vegas casinos for people with bad gas...other than the fact that I would want to keep a wide berth from the rest of the group, it could be a pretty good racket.


Monday, April 1, 2013

The pain of new BMBs, and the pain of GI issues...

Hello folks.  I hope this finds you on the end of a happy holiday week, whether or you celebrate Easter, Passover, the Great Pumpkin or something else altogether.

Two topics for today's post.

First, fellow traveler Suzierose, who I am obligated to point out for context's sake is not a particular fan on BB or MIRT or UAMS' approach, wrote me with the following question / observation which I think is a good one for all patients to consider:

Hey Nick!

suzierose here.

Gotta a question for you. 

You mentioned how painful the last BMA was for you, mine was too.  And it remained sore for awhile.  So I am wondering if they withdrew more aspirate in a SINGLE draw then they generally do for a BMA. We both know it is the aspirate that hurts like hell.

The reason I think this is because while reading about MFC I learned that one reason it has not been used as a standard is due to the discrepancy in enumeration of plasma cells from 2 samples.  As you know, there are typically hot spots in the BM.  So if they take 2 aspirates it is likely that creates the discrepancy, in PC count, as the 2nd sample (typically the one used for cytometry) is more 'dilute'.  Which would account for the enumeration difference when they stain the first PC sample and then use the second PC sample for  flow cytometry.

In contrast, if they take one large volume aspirate the concentation of cells will likely be the same & minimize any such discrepancy.

So, the next time you speak to Barlogie, could you ask this question:

Did they withdraw one large aspirate sample as opposed to 2 in order to do the MFC?

I suspect this is what results in our extreme discomfort.  I know one thing, my last BMA was way more painful and it lasted for awhile. Unlike the other BMA's where it was painful during the aspirate but it dissipated quickly.

Just wondering.


While we may disagree on a few things, Suzierose is exceptionally knowledgeable about this disease and this raises a number of interesting points.

First, by way of background, MFC in the above refers to multi-flow cytometry which is an advanced methods of analyzing bone marrow as might be used, for example, in Arkansas' test for residual disease, which I just had done.  PC count is plasma cell count -- plasma cells are one of the bases of the immune system and it is these that run amok with Myeloma.

So to answer, a couple of comments:

* My understanding is they do take more bone marrow out per bunch to accommodate the additional tests.  BB used to do two punches per test -- one for the normal cytometry / BMB and one for special gene array tests.  In UAMS' protocol, gene arrays are useful for diagnosis, establishing a detailed picture of baseline physiology, measuring the impact of initial treatment, and measuring the outcome of treatment (though once one is in remission, definitionally the gene arrays look normal).   Because I've been in remission, and because I'd just as soon reduce the number of holes in my backside, I generally avoid gene arrays.  As I was opting out of this most recent one, the BM nurse told me that they do it all with one punch and just take more material now.  I still declined it, but they only did one punch for the MRD test (MFC) as well.  The single sample was, I believe, about 3cm so that's a pretty big hole in the bone.  This certainly could cause the extra pain.  In my case, I believe the Zometa also had something to do with it -- the woman said she really had to put a lot of elbow grease into smashing the tool into my hip.  Sounds painful just typing about it!

* I don't have my labs in front of my but there is overlap in the results of the test -- they can get a PC count from the biopsy, or from the aspirate, and in this case I think there was insufficient cellularity in my biopsy to perform the test.

The second topic, which I'll tackle tomorrow since work calls, is the lousy GI distress in which I found myself.  Since I recently had a negative PET, I'm not concerned about stomach or colon cancer -- and I'm not concerned about infection, either.  But I am worried that all this treatment has caused IBS or worse yet something like Crohn's disease.  So I'm afraid an endoscopy is in my near future.  More on this tomorrow.

With that in mind, sweet dreams.  : \