About 180 and a Big Thank You!

I'm about 180 days out of my transplant and doing well.  I've been posting my jogging escapades on T (@PromotingGHL) and FB (find Promoting Global Hair Loss) and have been quite proud of myself!  More in store for the future but we'll save that story for another time.  I still have no answer as to my next steps.  I do need to try and schedule an appt w/ Dr J for follow up.  He's still not spoken to the guys in Boston yet.  I am hoping the agreement is to stay off the drugs until something occurs.  I'm feeling real good, keeping sub-9 minute miles and hoping to push it further.

I also wanted to post a copy of the thank you note I sent out via my MMRF donation site.  For those that were involved, those that donated and those that helped coordinate an event or just helped spread the word - thank you.  THANK YOU, THANK YOU, THANK YOU.

Here's a copy of the note that I sent.  Best, Bill

Dear Friends of PGHL, I am finally drafting this note after many months of remembering I have to do this but not physically sitting down and DOING IT! This note is to say thank you for all your support in my efforts to Promote Global Hair Loss. I'm assuming most of you have read my blog or seen my posts on FB and Twitter. in the event you haven't, I had my transplant on 29 January at Mt Sinai hospital in Manhattan. I was released on 10 February, with good numbers and allowed to finally head home - and I was itching to do so! Arriving home I was a bit out of sorts - much more "worn out" than I had expected to be upon my return. I got over that and bottom line, I returned to work mid-April. I'm now running about 3 times per week averaging 2.5 to 3 miles per and hitting around 9 minute miles. I'm pleased with my status and am expecting to move forward - fighting this disease continuously! But this note is about you, not me. I originally set a target of $50,000. I've never done this before and didn't know what my target should be (nor was I really going to think about targets - I get enough of that at work!) The target became 50,000 because the default on the form was 5,000 - I just added a 0. It's amazing what one little zero can do! I've since had to adjust my target to $60,000 as you guys came through in droves! As of this note we've raised $59,582!!! I know The MMRF is pleased but I wanted each of you to know I am also pleased and thankful as well. I believe The MMRF is making great strides to help identify a cure for this miserable disease. Anything I can do to assist is simply my pleasure to do so. I had a great time Promoting Global Hair Loss - and I don't intend to stop there. Yes my hair is back but there's still lots of work to do! Stay tuned to my blog, Facebook, Twitter and anywhere else I end up taking advantage of social media! Thank you again for your individual donation and thank you also to those of you that helped coordinate or attend the events that took place, around the globe, to Promote Global Hair Loss! Thank You! Bill aka rugbyhubby aka PGHL http://rugbyhubby.blogspot.com @PromotingGHL

Click here to view the fund page for PromotingGlobalHairLoss

Curcurmin / Tumeric

Noting this only for future reference. I don't believe this will have any overall impact but I have heard that Curcurmin (aka Tumeric) has an impact or is considered a valuable cancer preventative measure. When I asked Dr J his response was, "sure, if you don't mind smelling like a curry puff.)

I started taking it today and wanted to document that fact for my own reference later.


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Four Options And No Decision

So I met with Dr J today and reviewed a large amount of information.  At the end of the day I am pleased with what I consider to be my option of choice but am also concerned with how that may impact things overall.  I also had the chance to go by and see Steve who is on day 14 post SCT and may be getting out this weekend.  Here's a picture with me being very uncomfortable in the mask and gloves - i'm used to being on the other side!


On to the results.  In an earlier post I mentioned the comments in my recent results that caused me concern: faint m-spike that can't be quantified and IgG Kappa immunofixation.  I spoke to Dr J and he basically said that the results he's seeing there is what he's confirmed on the results he saw today - I am in a COMPLETE REMISSION.  I may have a faint trace of IgG Kappa as my IgA is sooooo low!  I'm actually negative IgA (below normal).  This is the beauty and the curse!

First, results - all my numbers came back good - actually, I can't say that - I was so focused on the other numbers that I never even paid attention to the basics!  Bottom line, they didn't say there was a problem so I'll go with all is ok.  My IgA came back 59 with "low" being 70.  My number from DFCI was 73 so I am definitely on the low side of everything.  That's the beauty, now the curse.

I'm not sure of the best way to explain all this so I'm reaching out to my inner "man of steel" and flipping back and forth and back and forth and hoping that you can keep up, but like the director of MOS, I don't give a damn! (it wasn't that bad a movie!)  There are four options here:

1) DFCI recommended 2-3 rounds of consolidation (RVD, 14 days on, 7 days of).  Follow that with a Rev/Velcade for the foreseeable future.

2) tandem transplant - do another one - back to back.

3) allo transplant - do another transplant - this time with someone else's stuff.

4) do nothing - that's right - nothing.

So what does this mean?

a) If you are newly diagnosed, you are given four rounds of RVD, cytoxan, harvest, transplant, consolidation and then maintenance (rev/velcade).  There are very many tests to verify the efficacy of this process.  Personally, I am not 'newly diagnosed'.

b) WTF - are you f'ing kidding me - go through that again, now?

c) ok - just as bad as the first time but with graft/host disease thrown in?  I'm NOT a fan!

d) ok - I can't complain about this one!

And to really make things confusing...

i) this is pretty much what everyone would do unless your disease is very aggressive.  You could quote a number of studies that provide proof of the benefits to this process and maintenance.

ii) this is still a standard process in some locations.  You could quote a study in Germany vs Holland (no, not a football match) where it was proven that the Germans that had tandem transplants fared better than the dutch with only single transplants.  This is a study you could quote.

iii) An allo transplant is a complete reboot - replace all the junk in your system with brand new, non MM junk!  As much as this sucks it's a true reboot of the system and offers a long term solution.  But with a massive amount of risk.  However, this is a study you could quote the success rate.

iv) this is where it gets tough to explain - you're not doing anything - so you're not fighting anything - so you're not putting your body at risk for anything.  There isn't any study to quote - the disease is going to come back.  What do you do?

Do you comprehend the beast to my beauty?  It gets tougher - DFCI is 'clinical' in nature - you have to do it the same way or you don't get the results we've documented.  I want to maintain the relationship I have at Mt Sinai and at DFCI.  Having that two doc reference and opinion is a bonus for me - losing that would be a big loss in my opinion.  If I opt for 4/d/iv then I potentially sever the ties with DFCI - I can't see them agreeing to this plan.  That is the true beast here!

Another aspect here - I've taken Revlimid for over three years and most recently it wasn't "working" for me.  With the prednisone (steroid) it started to go down but not for long.  In other words, my body has started to recognize/defeat the Revlimid.  When Revlimid is needed and acts against the cancer in your body there is a specific purpose and expected return.  When you don't have a disease to fight (as I am right now) then what purpose is it serving?  The other issue, and you need to realize the minimal impact but a risk nonetheless, is the 7% chance that Rev will cause another form of cancer (mds/leukemia).  This is only 7% but it is a risk.

The question I asked was if I did nothing for eight months and the disease came back what would I lose by NOT having done the rev/velcade (for example)?  The answer: nothing.  So why run the 7% risk if the benefit doesn't have any purpose.  The answer: who knows!  I can get you quotes as to why maintenance and consolidation works as well as why tandem works as well as why an allo works.  I can't bring that quote for nothing as nobody runs those tests.  But if I run this by the common sense meter, it's 'do nothing' that makes the most sense to me.

Dr J is going to talk w/ the guys at DFCI to explain his thoughts and get their opinions.  I'm hoping I can maintain the relationship there.  Losing that would be of great concern to me - but I need to think about me first.

Right now it's about 11p and I need to go to bed.  I post this with the full knowledge that I have not proofed any of what I've written.  So if it doesn't make sense - it's not necessarily on purpose!

cheers! :)

bill

Day 154 post transplant

Typing this post again and NOT happy that I have to do it!

At Mt Sinai today for my follow up visit with Dr J. We will determine what maintenance I will follow going forward. As a reminder, DFCI recommended 2-3 rounds of RVD as consolidation with maintenance of Rev and Velcade subcu. They also wanted to continue Zometa every quarter.

My numbers from DFCI looked good with my IgA at 73 (range 70-400). However, there was some confusing info on the immunofixation pathology report. Specifically stating there was a faint m-spike which couldn't be quantitated and that there was a trace of IgG Kappa and faint lambda lines. I will ask Dr J his thoughts on this and the ask Dr R if there are any other questions.

For now ill get back to waiting for the Doc but I wanted to give a quick shout out to Steve who is on or about day 14 post SCT and Andy who is starting the process in a few weeks.

Cheers,

Bill


- Posted using BlogPress from my iPad

Location:Madison Ave,New York,United States

Angry

Not a happy camper with BlogPress, my blog editing app, right now. Just typed in an update, saved and published and it disappeared. Not going to re type till I now this works. I HATE it when that happens.


- Posted using BlogPress from my iPad

A Long Day

My train to Boston was at 0655.  I arrived home, back in NYC, at 2230.  One glass of grappa and then poppa is off to bed!

(and part of the delay could have been this LIRR mess:
http://www.planning.org/news/daily/story.htm?story_id=186857350 )

Up First, Boston...

I had my visit with the Docs from DFCI today to review my current status, post transplant, and to discuss next steps.  Now, if you remember, there were two varying opinions as to my direction with respect to the transplant.  DFCI wanted a full four rounds of RVD (referred today as "cybordene" or similar), followed by a new harvest, then the transplant and then consolidation.  Mt Sinai had a differing opinion saying that we can see the chemo sensitivity when I was put on the Prednisone.  For that reason, let's go straight to the transplant.  If things don't go as planned we'll consider consolidation.

When I last saw Mt Sinai I asked about next steps to which Dr J paused and offered to get Dr R's opinion first, then we'll discuss.  So I guess Boston is up first!  Their recommendations (and I've already got my opinions but will hold my comments till later) are as follows:

• Do an RVD type consolidation - around 2 to 3 cycles
• go on a Rev and Velcade maintenance 
• keep Velcade sub cutaneous (less p/n)

We also discussed new drugs.  Daratumumab and Ibrutinib are both very new and since I currently have no disease I wouldn't be able to get these drugs (I don't fit on any of the trials).  Pomalyst is good but I'm not relapsed yet so he wouldn't consider it.  Kyprolis is good but velcade is better as it has less side effects on cardio pulmonary systems.   If Velcade wasn't working then Kyprolis is a solution, but if Velc is still working then that would be the way to go at this time.

I need to confirm my dates at Mt Sinai (sometime in July) but for now I'm getting back to work and prepping for a few days off next week!

cheers...bill

Quiet Isn't A Bad Thing...

When I'm sick and dealing with issues I have more time at home and more time to "think".  That tends to turn into more posts and gibberish on my blog.  When I'm fine, and life gets back to normal then my blog posts become more few and far between.  Now that I'm on the train to Boston, and Amtrak offers WiFi, I can take the time to update my blog and make sure those of you that follow my infrequent posts and aren't also on Fbook or the TwitterVerse are aware that I am alive and well!

There's a certain responsibility in writing a blog and I've been adequate, at best, on that front.  As I sit here trying to find a way to easily cradle my MacBook while composing this drivel I am thinking of what I should be writing and what would be relevant and of interest to the few people that do actually read my updates.  I've been trying to get myself more organized and find that my chemo brain has been retreating, though I still have (many) senior moments.  So while I'm taking a shower, going to the bathroom, riding the bus, pretty much any location where your mind can wander, I start to think of what I'm going to post in my blog.  Some people sing tunes in their head, I compose my blog - well, I sing tunes too but always off key and the voices complain!

My issue then becomes remembering the important comments you've practiced so that you can update that post forthwith!  And as you maintain that extremely important thought you venture to your iPhone or iPad or iMac or anywhere you can update your Reminders.  And then you see the email come in about the kids rugby that weekend or the scouts event coming up or the new stuff on sale today at NewEgg.  You finally get through all that and realize you've forgotten what you wanted to update.  Suffice it to say, I've solved the world's problems, answered the questions of all time (indeed, it is 42) but have not yet found a cure for cancer.  However, since I can't remember something from one side of the room to the other, these answers, heck, even the questions, are lost in another dimension.  So it's good luck I didn't figure out the cancer thing as that would really piss me off!

I am continuously thankful for the easy time I've had of the entire process.  I know many have said that I am an inspiration or courageous or any number of similar thoughts but to me it's just been lucky.  I've not had many issues, I've taken well to the drugs and I have wonderful support and fantastic insurance. So for me to be 'courageous' and and 'inspiration' it's easy.  I just feel awkward trying to take credit for any of it.  I will say you have to have the "half full" attitude or it will just get distressing.  You also learn to pick your discussions or arguments.  Yesterday I was late heading to church and my wife/kids left first.  The elevator had a neighbor when the doors opened on 11.  We don't talk often but it's a polite 'hello' or 'my, the kids have grown'.  I happened to have 'trimmed' my hair that day, at a 5 nonetheless - it's getting there!  My 'trim' was really just cleaning up loose hair that's grown longer than the rest - I will look like I painted on my hair - not even a chia pet!  As luck would have it, my neighbor made a comment.  Something to the effect of, "making sure you don't need another hair cut for the rest of the summer?"  I passed it off with a quick, "yeah, it's starting to come back," implying without detailing my situation.  He then continued to make another comment or two.  I gave up trying to do more than just nod my head and say yes!

This didn't upset me as he doesn't know - how can he?  I just didn't feel like going through the process of explaining the answer.  I mean we only had 11 floors!  It does highlight the question, "what do you do, as a patient, with respect to discussions of you and your disease in public?"  The answer is quite simple, "whatever the hell you want".  I'm not an advocate of telling the world to PissOff and not talking to anyone but some people are.  I don't think it's healthy but I don't know your situation and am not about to try and tell you what to do.  Personally, I find it more awkward to not talk about it and even worse to try and not talk about it to help make someone else more comfortable.  It's like telling a small lie - the more you try and cover it the bigger the lie gets.  The more you talk around the issue the more the issue becomes a - wait for it - "issue".  It's akin to a band-aid - just tear it off and get it over with.  I sat in the pantry in my building while someone just continued to dig themselves into a hole:

person: "wow, umm, have you been swimming alot recently?"
me: "no, but it is coming back."
person: "I had a friend that used to shave their head to be faster swimming"
me: (seriously?!?) "yeah, I had some friends like that but that's not what's going on with me"
person: "yeah, understand, well, I need to get going..." (look at the time!)

There have been other, similar times, where I've just come out and said, "no, just got back from my stem cell transplant" (and boy are my genes TIRED!)  In my eyes, straight and to the point is best.  People feel VERY awkward, but only for the first few minutes, then it's back to normal as they realize it doesn't really bother you and you don't want the pity party.  I had another circumstance, literally within two days of returning to work:

person: "How have you been?"
me: "Doing well, back a few days now and everything seems to be fine.  Still fighting a bit with the neuropathy but all in all, doing well."
person: - pregnant pause - "...great..."
me: "You have no clue what I'm talking about, do you?"
person: "ah....nope"

There was an awkward moment and pregnant pause but other than that the issue was dealt with.  The last time I lost my hair it was awkward and I really didn't take any pictures of me, just my head.  I found it more difficult to not say things.  This is one of the reasons I found myself Promoting Global Hair Loss and being so open and up front about the entire process.  Again, I appreciate your thoughts about me being an 'inspiration' or 'courageous' but the stark truth is it's easier for me!

I will throw in one last push for PGHL.  Although my event is long past (and my thank you notes STILL not sent) my board is still up and still accepting donations for The MMRF!  So pass that along to your friends - we're just shy of $60,000!

With all this verbal spew I am going to consider myself done for the moment.  Again, I'll apologize for the lack of updates but with baseball and rugby season coming to a close, ballet and piano recitals and a wedding I've just been damned busy!  Heck, I almost forgot Mother's Day entirely (and forgot about Father's day until Sat night!)

So that's my update, that's my story - and I'm stickin' to it!

cheers...bill

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!

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

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!

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! :)

SCT - What Day Is It?!?

Sort of like Morris Day, "What time is it???", I've lost count for "What Day Is It".  Suffice it to say it's Friday and my wife took the iPad away from me at 1113p (prior to it falling and hitting me in the face) and I didn't awake till 0500!  This was drug induced (Halcion) and it seems to be helping.  Last weekend I tried to NOT take the Halcion and that didn't do too well.

I had my acupuncture on Wed and it was relatively painless.  I can't say what direction it's taking me with respect to the peripheral neuropathy but I do believe it's helped with the sleep.  The p/n is still there, bearable but there.  I have moments when it feels like a very specific and local shock to my foot.  I feel a similar thing in my fingers sometimes though not as often.

I go into the doc on 17 April and am hoping to convince him to let me get back to work the following Monday.  I need to get back on schedule.

That's all for now - I'll do the math next time!

tx.....bill

SCT Day 59 - a corner turned?

A quick update as I have lots to get done today.  Took the Halcion last night rather than the Ambien.  The Ambien kept me in bed but I didn't feel like I slept yesterday.  I also got a call from my insurance nurse (yes, my insurance nurse) telling me that a side effect of Acyclovir is insomnia.  So I took the acyclovir at 6p rather than before bed.  Remember, I felt like I got no sleep the night prior and I only had 2.5-3 hours sleep the night before that.  I also got a Hong Kong massage (strong elbows and stretching) yesterday.

But I'm going to list the primary reason for success as the acupuncture sessions.

Last night I closed the light sometime after 1130 and got up to use the potty around 330.  I then got out of bed at 0630.  That's a normal night that I could live with!  I won't have acupuncture for two weeks as we're at my folks house for a week.  I'm not sure what I'll take tonight as we have an early flight in the morning.  But I feel like we have turned a corner (or at least see the bend.  Hats off to AmyG for setting the two month time frame!

Acupuncture Update

Yesterday was my fourth session of acupuncture, specifically intended to address the peripheral neuropathy and my sleep issues.  To remind everyone, my acupuncturist is also my doctor (generalist) so this is a very medical view of things and not just a holistic view.

This week she approached things a bit different than last.  If you remember, last week the pain in my feet, when she put in the needles, was much greater than before.  So this week she still had needles in my feet but not in the webbing between the toes like last time.  If I can remember, per foot, it was either side of ankle, two on top of foot, one top of ankle, one in wrist (inside) and another in the forearm (inside), three in the belly, in a line, below the belly button and lastly, one on the top of the head.  That did hurt going in but I was told to pretend all the bad energy was going out that point.

When she put the third, the lowest needle, in my belly, I felt it in my inside ankle, left foot.  The electrodes were placed between ankle and belly and the "tapping" feeling was felt in the belly this time, not the foot.  During my 20 minutes the tapping ranged drastically from severe (seeming to make my stomach actually shake) to non existent - completely gone.  The needle in the left forearm was directly on the nerve as any movement of my fingers would send a sharp twinge up the nerve.  The needle in my head didnt have much pain after it was placed.

When finished, my right leg went numb (last week it was the left leg that went numb) and I could definitely feel a difference in my feet.  Again, not necessarily better but a difference, and it felt like it was going in the right direction.  Today things feel different.  I want to say a little better but can't really say that for sure yet.  I need to get back home now that I've picked up my scrip!

More later!

SCT Day 58 - Ambien 2 Sleep 6

Last Thursday I got a scrip from Mt Sinai for Halcion.  As it's a controlled substance you need to have the physical scrip but the pharmacy was able to get me a 5 day supply.  Two nights ago I decided to try and sleep drug free, resulting in about two and a half hours of sleep total.  I felt pretty good for not sleeping so well!  I have pictures of my head as a canvas which I will post later (Eileen already put some up on facebook).  But I digress....

When I came back yesterday I checked the mail for my Halcion scrip - Duane Reade told me that they were giving me an emergency supply and the doctor's office was mailing me the scrip.  Since I hadn't seen the scrip in the mail, I checked at DR.  At first they said they got the scrip yesterday but there was a problem.  Apparently the RX insurance provider places a limit on the number of units you can get of a controlled substance.  If the docs scrip is beyond that amount then the doc needs to call and confirm.  I called Mt Sinai and spoke to the admin staff there who will send a message to the NP to address the issue.  So I went home and waited.  But not long!  The pharmacy called me back to say they confirmed they received a "fax" of the scrip but not the actual scrip.  Without the actual scrip I wasn't getting anything!

I made another call and finally got the admin that has a clue.  The NPs apparently both remember me telling them I would come up to Mt Sinai to pick up the scrip.  The only problem with that story is that nobody ever spoke to me!  They spoke to DR but they never spoke to me.  So this morning I had to schlep up to Mt Sinai to pick up my scrip.  And it still took me 30 min of waiting!

So last night, after the prior evening of only 3 hours max of sleep, I decided to take two Ambien and see what happened.  I went to bed around 11 and woke up (to the best of my memory) at 0530.  That's the first time.  However, I don't feel rested.  When I woke up I felt like I had been hit by a small truck.  Just sore in the arms and shoulder areas.  I don't remember dreaming at all.  With the Halcion I was dreaming.  I also didnt take my B complex vitamin today in place of a B12 specific to help with the neuropathy.  I did have acupuncture yesterday and will address that in a separate blog entry.

So at the end of the day, 2 Ambien knocked me out for 6 hours but I'm not sure if it did what was necessary.  

SCT Day 57 - well....

No Halcion last night - went to bed around 11-ish.  Woke up at 0214 - been up since - so that little idea didn't really work too well!  :)

I can't say the Halcion is the reason I've been sleeping as I really haven't been sleeping.  But I've not woken up and then couldn't get back to sleep.  That is a first.

For now - it's time to get the kids breakfast ready.  I'm also meeting up with my artist friend Eileen today and she's going to test color my head.  As part of my idea to 1) have fund with being bald and 2) potentially get others to do the same for a calendar, Eileen's going to test my head as a canvas and see how easy/tough it might be.  More on that later.

SCT Day 56 - Halcion - Halci-off

I'm not sure what, if any, benefit I'm getting from the Halcion.  Tonight I am going to go without the Halcion and see how I feel in the morning.  I don't feel bad or drugged this morning but I also don't necessarily feel rested.  I ended up taking a nap as well.  I can't think of anything more to add than I think I'm going to take coffee back up!  This lack of caffeine stinks!

SCT Day 55 - Radio Silent

Apologies for being radio silent.  I think the lack of sleep is catching up with me and it was a typical weekend with kids, sports, etc.  And a new drug!  Haclion (Triazolam) which is another sleeping pill similar to Ambien (Zolpidem) but the pharmacist said it was actually more along the lines of Ativan (Lorazepam).  Read the Wikipeida reference - it doesn't sound like a fun drug!  One fbook friend referred to it as an oldie but goodie.  When the NPs finally called me back (the Epic MyChart system and how bad it functions is fodder for another blog entry) I told them my thought process.

Since I believe the neuropathy is keeping me from sleeping through the night and that's related to the pain in my feet and legs, it was my thought that a pain killer might help dampen the pain and give me a few hours straight of sleep.  But my parents' doctor had recommended something called Halcion, so I brought that idea up as well.  Of course it wasn't the NP that actually called me but another nurse down in the pecking order!  She can't do anything so she needs to confirm with the NP directly.  Two hours later she says we're getting you the Halcion.  As this is ANOTHER controlled substance they either have to mail (snail) me the scrip or I have to come pick it up - however, I didn't realize that.

I decided to make the move - from CVS to Duane Reade (Walgreen's) that is next door to my building. "Just fax it over..." - famous last words!  To be sure, I called Duane Reade to make sure they were aware of my scrip coming.  Of course they needed basic info but they also needed my prescription drug card identification.  I carry my BCBS card everywhere - that's my insurance card - but it's NOT my prescription drug card.  I call BCBS who tells me they can refer me over to Caremark who handles my prescription drugs.  Then I have to tell CVS/Caremark that I'm switching to Duane Reade!  Then I pass along all the identifying details to the pharmacists via the Duane Reade voicemail system.

I head over to just confirm they got the scrip and everything is fine, etc.  That's when I learned about the controlled substance issue.  They were able to get me a 5 day emergency dosage based upon the doctor's verbal confirmation and I should be receiving a physical scrip in the mail for an extended dosage.  That leaves me with the very quick Facebook poll I placed on Friday - should i:

• use "binaural beats" audio therapy to lull myself to sleep - the act of using two varying frequencies to 'entrain' your brain to a certain frequency that is akin to sleeping or;
• take the drug

My completely unscientific poll proved one thing - I don't have the reach I used  to! :)  Three people said go binaural, two said go drug and one said if one doesn't work, try the other.   Thursday night I tried the binaural beats.  My wireless headphones died while doing it so i woke up hearing waves but not through my headphones.  When I switched to the wired headphones I found out how much the cats love playing with headphones and how much they can hurt your ears when you leave them in and roll over onto your side.  Bottom line, it didn't work and I was a miserable wreck on Friday.

Friday night I tried the Halcion for the first time.  I think I was able to sleep for about four hours (midnight to 4a) or at least I don't remember getting up.  I don't feel like I was rested and the rest of the night was no different than before.  On Saturday I tried it again but I was taking care of the kids so when the youngest came into say hi to Mommy (who was still out with friends) I was 20-30 minutes into it.  Twice I had to get up and bring her back to bed.  After the second time Mommy came home.  Halcion is a short acting drug that puts you down but doesn't leave you with the big cloud in the morning.  However, I think waking you in the middle of when it's working isn't a good thing either.  At the end of the night, I was a wreck on Sunday - not a happy camper.  The grouch that awoke on Sunday could be due to lack of sleep or could be due to the Halcion though I don't remember seeing that specifically in the reactions.

I took it again last night and I feel like I may have got some rest but I was definitely up a similar number of times.  I'm not seeing any other side effects but I may try and go to another massage sooner rather than later as my neck and lower back are both aching (too tense when I sleep I guess.)  Another friend is taking the bikram yoga (hot yoga) that is near his office.  I may try that to see if I can get back into a stretching and workout mode.  

So I'm sticking with the Halcion for now - will have acupuncture on Wednesday - may get another massage and then we're off to my folks house in SC for a week where I hope the weather will be over 60 deg as I really am, for the first time in my life, OVER winter!  

Will talk more soon!  And apologies for those that have emailed but I haven't gotten back to yet!

bill

SCT Day 50 - OUCH!

Like I said last time, I felt like the acupuncture was having an effect.  It seemed to focus the pain, almost as if it was cornering the pain, like a rat, getting ready to force it out of my body.  I told the doc this today prior to my session and she was glad that it sounded like something was occurring.  Well today, something was DEFINITELY occurring.

I have a relatively high tolerance for pain.  Years ago, while still in Hongkers, my wife and I were back in the states and we got tattoos with my brother and his wife.  It was a surprise for mum and dad later on!  Well I was the first to get that tattoo: family crest on the left ankle.  When finished, I headed home to get changed into something more casual.  They all asked, "did it hurt" and I responded, "only a little, more a bit ticklish when they had to fill in the colored parts".  When I returned my SIL was ready to kill me (for her red Canadian flag place around the hip) because it HURT LIKE HELL!

So when I have acupuncture there's a needle, hell, there's a whole lotta needles!  But it's just a bit of a prick and the needle is in.  Two sessions ago the webbing between my left big toe and first toe hurt a bit when the needle went in but everything else was fine.

Today was a whole different story.

Anything that went into my feet hurt and it hurt like hell!  Twice I jerked my foot when she put the needle in - I have never done that.  I believe I had about 6 needles per foot (not including ankle area which had another 2).  Every one hurt going in.

And then she hooked up the batteries.

The first four circuits were fine, these circuits feel like a slow tap on the area in question, two circuits on each side.  Then there's the two circuits between the toes and the top of the foot, which usually provides a buzzing sensation to the area.  Not today.  When it came to the left foot it was by the toes and was a hot burning sensation between and under the toes.  On the right side when she slow turned up the amperage it was like having a live electrode strung between the toes and the top of the foot.  I told her this and then quickly asked that she turn it off - it hurt that much!   Part of it was most likely fear but the pain was much greater than I've ever felt.  We finally got the power on and I felt it top of foot rather than by the toes and the sensation was more heat or electrical than a simple vibration.

I asked if this is 'normal' and was told there really is no normal.  But it definitely looks like something is happening and the acupuncture is taking effect.  My feet are still singing!

more later.