Friday, May 17, 2013

Survey Says....

1-3% plasma cell penetration which apparently is what is normal for a normal, non-MM human.  That was the voicemail I got yesterday (since they can't remember to call my cell phone to discuss).  MRI also came back clean and I received a copy of that in the mail.  It does suggest I'm getting old - go figure!

Saturday, May 11, 2013

GI Tract, Pro Biotics, TMI no doubt!

So I made reference to this in one of my other posts but ever since the transplant the GI has been, well, "funky".  I won't go into details but for those that remember what it "used" to feel like, that feeling of satisfaction, a "job well done" - well, to not have that, it's rather frustrating.  My last post had details with a piece of bone marrow and the aspirate fluid from inside my marrow.  But I bet the first two sentences of this post has grossed out more of you than anything I put in my last posting!

It's a fact - everything has changed - now I have to fix it.  Prior to the transplant I was asked to take Glutosolve (help immunes system within the GI tract) and a pro biotic.  The intention (as I understood it) was to make sure any bad bacteria within the system was replaced with good bacteria PRIOR to my immune system being compromised.  What I didn't realize is that I could have these issues after - I just thought things would get back on track.  After my 2nd visit (approx 60 days) my doc mentioned, "oh, take a pro biotic", and I was thinking, 'could I have done that 30 days ago?'

I'll preface the rest of this post with my legal disclaimer - this is what I've done, at the instruction of my doctor and the results I've experienced.  It's your job to review, see what applies to you and talk with your doctor to see if it may help.  I'm not a doctor (and never played one on TV!)  I hope this helps but never do/take anything without confirming with your doctor.  And even then, make sure common sense is used in some respects!

So this post is for those of you that are having the same issues as I - it's just not working right.  Without too much detail (as I believe it is relevant), I will explain some of the symptoms and I'll warn you again, it's TMI and gross (not necessarily in that order).  Mornings seem fine but everything is "soft" and very light brown in color.  Food in almost always equals "refuse out".  Not being near a suitable facility could lead to embarrassment.  When you get home it's more likely gas as well as soft solids but a very small portion.  At times this can be 'explosive' in nature.  I've even found times where it's more mucus-like, clear and nothing else.  But gas is definitely an issue.  But it's worse than Dex as it's not just gas but always something 'else' as well.  That's enough of the detail.

I started with Culturelle which offers about 10 billion "things" - that sounded like a lot and it had "lactobacillus".  Specifically I was told to get acidophilus and the pharmacist said this had that.  After three weeks I wasn't seeing a big improvement.  The color had darkened but the gas an mucus discharge hadn't changed.  When I mentioned this to the doc he said I needed Psyllium Husk - I'm thinking shark cartilage or some other strange Asian, natural wonder drug.  My Dad informed me it's MetaMucil! :)

So I've done two things:
1) "Ultimate Flora" 'extra care daily probiotic' with 30 billion "thingies" and 10 probiotic strains.  This specifically lists "lactobacillus acidophilus" along with 9 other strains.  Three are for upper GI and the rest for lower GI (if I'm reading that correctly).
2) Meta Mucil pills - taking 5 at a time with plenty of water.  Currently taking them twice a day, morning and evening.  These pills have a very severe warning about taking with plenty of liquid.  The intention (as I understand it in a purely non-medical fashion) is to create a ton of fiber in your system that will then help "zamboni" the tract (for those non-North Americans or those of you that don't know hockey, the "zamboni" is the big tank that melts/scrapes/smooths the ice at a hockey game.)  Similar to those cheap prizes you get at kids birthday parties, the "dinosaur pills" that you put in warm water and they grow 100 times!  If you take one of these pills and don't swallow it completely the outer shell will dissolve and the interior will increase in size, potentially blocking the esophagus and causing you to choke.  It's quite a scary reference but I get it.

At the end of the day, the two do seem to be cutting back on the gas and 'normalizing' the bowel movements.  It's been less than a week but I think we're moving in the right direction for this.  Since I had a bit of downtime today I wanted to post this as well as put it into my "drugs and their effects" page as I think it's relevant.

As always, thanks for reading and putting up with such a disgusting topic.  But for those that got to the bottom I'm guessing it's because you're dealing with that disgusting topic as a fact of life!  I just hope this helps!

Cheers...Bill

Wednesday, May 8, 2013

SCT Day 100 - a day at the park!


The doc said Day100, I thought it was Day99 but whatever it is, it's a walk in the park! Actually, today, it's a swim in the park - it is POURING outside - a miserable day here in the city.
I started this morning with Zometa (first time in six months) and of course it took longer than anticipated. By the time I got to the Doc's office it was quarter past Eleven and I was supposed to be there at Ten! Much to my chagrin, The MMRC (related to the MMRF) was at the hospital today for a conference and my Doc was doing the introduction - at 11:30! He asked me to wait till 11:40, then he'd do my biopsy.

The biopsy went without any complications. Unlike prior times, the aspiration (removing fluid from the bone marrow) was first and the actual biopsy, the removal of a piece of marrow, came second. I know there's a local anesthetic in use but man that aspiration just sends a chill up the spine. Bottom line, it's done and I am none the worse for wear. We discussed sending some of my marrow to the MMRC but the doc expects there to be no disease so sending a sample to them won't do any good. However, he did keep a sample for his research so we have it on "file".

I'll get results next week and will see Dr J again after seeing Dr R in June. At that time we will discuss next steps and what potential maintenance programs to consider. I'm hoping for a return, from the bone marrow biopsy, of 0 plasma cell penetration. Ill get my bloodwork, specifically immunofixation tomorrow (after I call them to ask for it to be released) which I'm sure will all be good.

So here's some of the gore!

What you see there folks is what was pulled from my right hip this afternoon!  That is my bone marrow and that looks like a pretty big piece!  It didn't hurt, really, well maybe a little bit.  But I didn't feel the "pop" that I usually feel when he gets through the bone.  It really was more mind over matter this time...my mind hurt more than my body really did!


This, above, is the fluid removed from the bone marrow. The doc is extracting fluid from a vacuum so there's not the sense of traditional pain but more like someone is sending an electric shock up your spine, similar in nature to when someone drags their nails down a chalkboard!

I was also able to ask my questions and will need to update some of my pages with information as I've been remiss in not doing that. The most basic thing, which I believe is important for anyone that has gone through a stem cell transplant, confirm with your doctor but you can take a pro biotic to get your system (intestinal) back in shape. It hasn't done everything I expected so the doc suggested also taking cyllium husk (?) to help bulk things up and work with the pro biotic.

I've also been cleared for a normal diet! I can have salads and I can have stinky cheese! Wine was cleared for consumption after the last visit. So I see Dr R in June and the will come back to see Dr J after that.

All in all, a walk in the park!

Saturday, May 4, 2013

SCT Day 95 - wow - day 95!

When life gets pseudo-normal, my blogging falls into a dark hole.  I've not had good experience with other blogs.  When I first got diagnosed it was my primary reference point to answer some initial questions.  Of course then I ran into that blog that stopped publishing...not because life went back to normal.  That's the bitch of this disease...as good as I feel there are others that are not feeling good.

But I don't want this to be a depressing post (guess I already started that!)  I'm at Day 95 and I go in for my bone marrow biopsy next Wednesday (along with a Zometa treatment and an MRI).  I returned to work two weeks ago and that was rather anti-climactic.  Between the return to work and my son's baseball season kicking into gear we've been fairly busy, hence the lack of updates.  I joined twitter to promote my "Global Hair Loss" (and the markets aren't closed on that front - if you want to donate you still can!)  I've developed a small number of followers but they are asking where I am and what's up!  Thank you to my twitter verse!

Getting back to work is interesting.  I'm away from the bulk of our group but when I go to the pantry (you have to see our office to understand "the pantry"), which IS the front entrance of the building, it can be difficult to get back out!  First, I don't get recognized much (massive change in hair style will do that) but when you do get recognized you have, in I Love Lucy terms, "some shplainin to do."  You can spend 20 minutes talking about what's been going on when someone else walks up, which means another 20 minutes.  I don't want to sound angry about this - that's not the case at all, I just have been out for 3 months and if I spend all my time in the pantry I feel like someone will be mad!

But I feel worst for the people that don't know and can't figure out a way to ask and then realize what's going on and can't figure out a way to stop talking!  I was asked if I was "doing a lot of swimming" and I replied, "no, but everything's ok and the hair is coming back" - it just went downhill from there.  I had someone else say, "I didn't recognize you" and I replied, "shorter hair cut" (in my mind jokingly) and their response was, "me too" - I don't think they got that.

On a technical stance - I'm good - all numbers (CBC, etc.) are good.  My Immunofixation numbers are actually low (below normal low) and there's no m-spike or trace of the disease.  The biopsy will give me a deep-dive and really confirm how good I'm doing from that perspective.  Regarding the "internals", at my 17 April visit with the doc I explained that it's not all back to "normal" it's working but if I'm outside somewhere and need to go I really NEED TO GO!  His response was simply, oh, take a pro-biotic.  Not the one with yeast but the one with (and this took me awhile to pronounce correctly) acidophilopholous.  Could I have known about that 30 days ago???

Sleep is still drug-induced (Halcion) but working.  I tried last Friday to do without and woke up at 4a.  Granted, I was up today at 530 but it sill feels different.  I think I need to do "without" for a few days to really confirm it's not working.  I'm waiting till after the BMB before I decide when to try this again.  I'm also still doing the acupuncture to work on the P/N.  My biggest concern right now is the inability to do a rushed walk.  If I try my left leg (on side, about calf down) cramps up and hurts.  The doc is working on this to see how we can needle and electrify this thing out of there.  I'm also trying to do massage when I can but I just don't have time! :)

I'll leave everyone with my "hair status"!
(my twitter verse already saw this one! :)