Saturday, December 28, 2013

My European Contingent!

Hoss, originally from Iceland, now in Switzerland, is running with me during the Empire State Building Run Up (#ESBRU).  He doesn't have access to a large building with stairs - but he has something better!  Watch this video as it's truly amazing where he's running.  I am jealous!
http://bit.ly/hossesbru

Unfortunately I can't embed the video as YouTube won't recognize the link and I don't 'own' the video.  Bottom line, Hoss will run a meter up the mountain for every dollar raised!  And he's doing this in the snow!

Go show him your support!

Bill


Wednesday, December 25, 2013

Christmas starts with C(h)R!

As I'm the only one up at this moment I"ll take a few minutes to say thanks.  Last year at this time I was very busy Promoting Global Hair Loss but in the back of my mind the fact that I was a month away from a stem cell transplant was always nagging and scaring me.  Now flash forward a year and I am in a complete remission (CR) and my numbers are normal and I'm not taking any meds* and I'm in better shape than I have been since High School (and I'd almost challenge that!)

For all this I'm thankful.  For my kids, as crazy as they may make me, I'm thankful.  For my wife, who puts up with me and my no-med chemo brain ways, I'm utterly thankful.  For my family, who may be dysfunctional in our own special way, are still fun, I'm thankful.  For my friends and extended family for all they do to help, support and motivate me, I'm thankful.  For my new "social media" friends, fighting this same miserable disease, I'm thankful as you motivate me more than any of you know.

But right now, that pot of coffee that just finished, and the big PILE of presents under the tree - for that I'm thankful!  Bring on Christmas - WTH are the kids???

Merry Christmas everyone!

Bill

@PromotingGHL
#PGHL
http://bit.ly/pghlESBRU

* note - I am taking acyclovir to prevent against shingles as I will be getting a whole new set of inoculations sometime after my one-year anniversary of the sct.  cheers...b

Monday, December 16, 2013

It's A Bit Tougher In Year Two

Last year I was heading for the hospital, for a rather significant procedure and my efforts raising money for The MMRF were rather simple.  I just kept talking about shaving heads and a bunch of people came through for me.  We raised $60,000.00 for The MMRF and I had a stem cell transplant.  I didn't know what to do this year and as I was running, and feeling good, I decided I could do this crazy thing and run up the empire state building.

But the difficult thing here is asking all of you that came through for me last time to come through for me again.  I started to realize this year that there are a whole lot of charities out there asking for donations.  I realized this year that I can only go so far personally, there are charities that I have donated to in the past that I've had to cut back or not donate at all.  And I realize a lot of you face the same challenge.  I am not doubting my commitment to the charity, rather, how I phrase my request to you this time.  It's sort of like being a kid, you don't think about a lot of stuff.  Now I've grown up and I'm realizing the request I'm making of you - financially - is, or potentially could be, taxing on your charitable giving limit.

So my challenge is two-fold.  First, pulling the heart strings, just so, to illicit a response resultant in the opening of your checkbook and a donation to The MMRF.  Second, is to provide enough of a value for your donation so that you deem this to be credible and worthy.  I am breaking this down in a much too black and white manner, and there are too many shades of grey to take this lightly.  Some of you make donations as you're close friends of mine.  Some take a further step and make a significant donation because you can.  Some of you make a donation, similar to what I do for those requests that come throughout the year, that are what you can do and you do it for me but you also realize you have to do it for a few others.  I am thankful, equally, for all of you.  Obviously, where you can make a big donation I am overly grateful and appreciate how much closer that brings me to a cure.  For those that are close friends, you know my feelings.  We've been through a lot, good and bad, and some, worse and bad - but we've been through it.  And I appreciate your support.  For those that include me in the list of charities you support each year I really appreciate that effort.  And I want to find a way to help you realize that appreciation.  I want you to feel like the charitable investment has an association and import that carries meaning with you.

Each of you have a reason for supporting a charity or charities.  I support or have supported our school foundation, the archdiocese of New York, the American Cancer Society, the Dana Farber Institute and, one of my favorites, Make A Wish.  My job is to convince you of the need to support my charity and the benefit that charity brings.  There are a few charities that will actually outline what percentage of your donation makes it to the charity.  What I've found with The MMRF is a group that is thinking well outside of the box when it comes to addressing a disease that is currently considered incurable.  Their concept of no silos, data that is shared by all and results that benefit all that share, it just makes sense.

But past all of this, I have this disease.  I have this disease that is incurable and I have The MMRF that is watching my back.  More importantly, I have you - all of you - watching my back.  I still feel uncomfortable asking you for your support, again, this year.  But i'm going to have to ask for it.  The money we raise will make a difference.  I expect, and predict, that my disease will become "chronic" in my lifetime.

The difference between incurable and chronic is massive - and I apologize but you can't understand what that means till you think about how you talk to your 9 year old about that thing you have.  

For that reason, among many others, I'm going to do my best to actually run up the Empire State Building.  And I'm going to ask you, AGAIN, to donate to my cause.

Thank you in advance, thank you always,

Bill
aka Promoting Global Hair Loss
@PromotingGHL
http://bit.ly/pghlESBRU

Tuesday, December 10, 2013

And so it all begins...again!

Last year at this time I was preparing to head into hospital for my stem cell transplant.  I wasn't worried but it was a big procedure with lots of side issues.  I'm now in a complete remission and aside from this most recent bout with a chest cold, feeling phenomenal.  I am very lucky.  Two friends I know here in the States are back in the saddle again, one back in treatment and another finishing a second stem cell transplant.  I have two friends in the UK, both in treatment, one getting ready for a transplant and a third that is so crazy from chemo he's bungee jumping off bridges in Scotland.  As I come upon my one year anniversary I am thankful for my personal status but also thankful that I can continue what I started last year -

Promoting Global Hair Loss!

Some people may not understand my little inside joke but I lost my hair last February, for the second time.  Rather than being ashamed, I was bald and I was proud!  I wore stupid hats, took lots of pictures, had parties all around the world and shaved 21 heads at my event here in New York City.  More importantly, I raised over $60,000.00 to help fight this miserable disease!  For that I thank all of you that supported and contributed to my effort.  For that, I also apologize as I'm coming back to ask for your help once again!

A few months ago I thought about how good a position I was in and what I was going to do on my one year anniversary.  I already shaved my head and couldn't ask Chris and Craig, Craigles, Harry and all the others around the globe that took down their locks for my cause.   That's when I called The MMRF with another one of my, wait for it, hair-brained (!) schemes: I'll run up the Empire State Building!

Yes, I said, "RUN UP THE EMPIRE STATE BUILDING".

Three years ago, when I first heard about this race I said these people are crazy.  I still agree, their crazy - it's just I'm one of them this time.  I'm still Promoting Global Hair Loss with fellow runners representing Europe and Asia:  Hosskuldur (Icelandic, living in Switzerland) and Christian (Aussie, now in the States).  I'll have another post regarding training but you can follow me on my Nike+ app and via twitter and Facebook.  I'll have more later but for now, here are the relevant links.  Also, please read my post just prior to this for a little detail as to why I do this.

What can you do?  DONATE - help me kick this cancer's @ss - for me, and for a number of friends of mine that are going through chemo, transplants or just the day to day mess that is dealing with this disease.  We've made great strides and The MMRF has helped us get there.  I'm going to make big strides up the ESB and I'm going to do it with your help!  Thank you in advance!

Empire State Building Run Up (ESBRU) donation board: http://bit.ly/pghlESBRU
Twitter: @PromotingGHL
Facebook: http://bit.ly/PGHLfbook
my first video: http://bit.ly/ESBRUvid

Wednesday, November 20, 2013

Why Do I Do It and What Can You Do?

I have an incurable cancer called Multiple Myeloma.  For those of you reading or following my blog you've known this.  For those of you following my escapades "Promoting Global Hair Loss" you are also aware.  I've gotten so many messages from so many of you I wanted to explain why I do it and, in return, explain how you might be able to help.

I got this message on my Facebook page the other day:
"Dear Bill .... This is exactly what I have been looking for and can't tell you how much it is already helping me. I accept my diagnosis but am having trouble dealing with "what happens next". You have given me a very good tool to bring to the fight. Thank you so much. "

I originally created my blog so that my mother could read my updates, re-read my updates, talk to her friends, re-read my updates and then come to me with questions.  That was my original purpose, and it worked (somewhat -  sorry Mom!)  There's another purpose here and it's completely selfish in nature.  I do it for me - so I can spew forth the thoughts from my brain, digest them, and keep myself on track and motivated.  However, throughout the years I've gotten messages like the one above that make me realize the value my personal thoughts and comments bring to others.  This is an unintended, knock-on effect that makes me feel great - again, selfish benefits!

Many will tell me to be quiet, that what I do is important to others and it helps motivate others.  For that I am grateful, just realize the benefit I gain here as well, my pat on the back and my 10 minutes of fame!  But it also reminds me to push forward.  If what I do can help someone else with the disease to stay hopeful, or more in control, then I've served a higher purpose.  If that also helps me tweak the heart string, more importantly, the purse string, that's even better!  I truly believe The MMRF is making the strides necessary to move this disease from mortal to chronic and, at some point, curable.  But we need to remember (me personally, I need to remember) how well off we are.  I am in a complete remission.  Kathy Giusti (founder of The MMRF) wrote a poignant piece in her blog reminding us others aren't that lucky, that we're just not there yet.  You can read it here (Nov 18, 2013 post).  Other friends I know are doing well but are having to take next steps, whether that be treatment or another stem cell transplant, they have to take next steps - and I don't.  I'm thankful but I also feel guilty in some respects.

I know I shouldn't, but I do - and that is why I do what I do - because I can.

I'm taking steps, LOTS OF THEM.  I've come to know the paint on the 10th floor stair well, the bobby pin that's been on the 6th floor stairs for 2 weeks now, the floors where the fire hose wrench is hanging and floors where the wrench is on top of the hose.  I'm doing these stairs in preparation for my one year anniversary of my stem cell transplant.

The Empire State Building Run Up (ESBRU) is on 5 February, 2014 and The MMRF is the primary charity benefitting from this event.   Last year, when this race was taking place, I was day 4 of my stem cell transplant.  Today I am in complete remission with no trace of the disease.  On my one year anniversary I will do my best to RUN up those stairs in the Empire State Building, because I CAN -  and so many others can't!  I may walk the last bit but I know I will make it - and I will be asking you, and yours, for donations - that will be coming up soon enough.  But this brings me to my next segment: What Can You Do?

The Corporate Run-Up Challenge - Get In. Give Back!  
The MMRF has a number of corporations joining in this Corporate Run-Up Challenge: Goldman Sachs, Citi, Deutsche Bank, Millennium, PWC, Google and many more.  But not enough - please pass this along to your friends, colleagues, or anyone that wants to put in a team of three to race ESBRU and raise money for The MMRF.  Some groups have put in two teams, one for the 'race' and one for the 'raising'.  Please pass along my blog and my Fbook post linked to this blog and help me get teams signed up for ESBRU now.  I offer myself to any team that is signed up for the Corporate Run-Up Challenge to help get the word out and raise funds for The MMRF - just let me know or reach out to The MMRF and let them know.  To sign up your team simply go to TheMMRF.org/GoVertical

Something a little less physical please - and in my neighborhood!
So maybe you aren't as crazy as me and don't feel like stressing your gluts, quads and knees with thousands of stairs per week, we can work on something different for you then!  Do you have a neighborhood watering hole?  Can you host a guest bartender night?  Be my guest bartender - if you do it in the City, I will try and join you.  If not in the City, I can try and join you via internet but I would love to join!  This is much easier than last year - nobody has to shave their head!  Just get a bunch of friends out for drinks and raise a few dollars for The MMRF - I can work with you on how to process the donation.

Afraid of your friends when they've been to the local watering hole?
Or do you have kids and want to get them involved?  I'm happy to help add my name to any bake sale, walk or jump rope contest that you want to do to help raise funds.  You'll see on my PGHL Facebook page the pancakes my brother made last year for my "hair today, gone tomorrow" logo!  What about "hair today, gone tomorrow" cupcakes?  Whatever you want to do, I want to help.  I will start fundraising in the very near future so would love your input, your help and of course, your money for The MMRF!

I'm stepping off my soap box for now.  Thanks for reading, thanks for sharing!

(n.b., "@1=1576 -- at one year, I will be climbing 1576 steps! :)

Friday, October 4, 2013

PGHL goes ESBRU!

I'm going vertical!  We're going to get teams together to raise money for The MMRF by going vertical - UP to where King Kong hangs out!  The Empire State Building Run Up is February 5th 2014 - that will be my one year anniversary of my stem cell transplant.

If you want to raise money and run the Empire State Building, let me know!

@1=1576!!!

My video!

Saturday, September 21, 2013

Just A Mile To Go!

Last night I was running with a gentleman who has truly impressed me!  Eric is in Central Park running  - now granted, a large number of people run in Central Park daily.  Eric, however, has been running since Friday morning (and it's currently Saturday evening).  He's over 130 miles run thus far, and all to raise money for The MMRF to help find a cure for Multiple Myeloma!  I haven't even seen how much he's raised but last night he was just shy of $70,000.00.

Inspiring!

Katie Couric came by, Amy Freeze (ABC7 NYC) ran two loops (12miles) with him doing an interview 'on the run'.  I ran with Eric last night, starting around 10pm.  He had been running 16 hours around the time we finished.  I ran for about an hour.  At 1am he had to exit the park (it was closed) and he had to run AROUND the park - CPS to Fifth to 110th to Columbus to CPS - that's longer than the 6.1 mile loops.

Bottom line, this guy is impressive - and he's doing it all to fight MM.  If you can make a donation it helps to motivate and move him along.  He's got one more night to get through and will finish at 8am tomorrow (Sunday morning).  I'm going out to watch him finish - let's make sure he finishes by meeting his goal!

Please feel free to pass this along, share it on Facebook/Twitter/Tumbler or whatever other social media is your social media of choice!

My finish last night:
Eric's page on The MMRF:
http://TheMMRF.org/48hours

Eric's page on Facebook:
Just A Mile To Go

Eric's page:
http://www.justamiletogo.com

Sunday, September 15, 2013

Over $60,000 for The MMRF!

Thank you to everyone - we've been "Promoting Global Hair Loss" to fight Multiple Myeloma and we just surpassed $60,000.00 raised for The MMRF!  This will conclude this goal for Promoting Global Hair Loss but as I've surpassed my half-year anniversary of my stem cell transplant wait till you see what I have planned for the one-year anniversary!

Details soon....

Tuesday, September 3, 2013

A Big Help and Truly Great Man...

In 2008 I was diagnosed with Multiple Myeloma.  At that moment, as first documented in this blog, the family network kicked in as we tried to figure out what this disease was in addition to how and where to get treated.  My father spent my entire life working at CSX and through that connection I was given the phone number for a gentleman with the same disease as me.  I'll never forget the night I called - I had stayed late at work so that I didn't have to make the call at home.

The phone rang, was answered, and I got my first chance to talk with Rick Corman.  He was very clear to point out that he had time to talk but he was also enjoying a great plate of barbecue and hoped I didn't mind if he continued to enjoy as we talked.  I didn't know what to ask, what to talk about, what to say and it didn't matter.  Rick had a way of making it all easy....

"I bet there's a whole lot going through your head right now. (chew, chew, swallow)  What are you thinking about all this?"

From there we just talked.  He explained how he got diagnosed, he explained what he's going through and he helped me think through what I was doing and what I should do next.  He had his opinions (and he wasn't afraid to let you know them) but he wanted my thoughts as well.  A few months later he was in New York and asked if we could meet up.  I was still wary about talking about my disease and wary about who to talk with but Rick was just a normal, every day kind of guy would made things...simple.  He also talked to me about what he does to raise money and the drugs he's been taking - and how the drugs he took (Thalidomide) helped design the drugs I've been taking (Revlimid).

Rick put me in touch with Dr R at DFCI.  I was going to say 'helped me get in touch with...' but that wouldn't be right.  He gave me Dr R's mobile, said call him right now, tell him Rick said to call and then call me back.  Seriously....  That was Rick.  And at some point I felt like I was taking advantage of him, calling him and taking up his time when he had his own "thing" to deal with.  I should have known better, especially after having one of my father's friends reprimand me for not calling him.  "Rick wants to know how you're doing..."

I guess part of what I do - with this blog, with my Promoting Global Hair Loss, with just trying to help out all started because of Rick.

Last Friday I went on vacation w/ the kids and another family.  Rick passed away the day we left.  My parents thoughtfully didn't say anything while we were there and the obit my mother had sent was lost in the email cloud.  I happened upon the news story today and read the obit tonight.  Like a photograph, the obit, or any story about Rick, is only two dimensional - and anyone will tell you Rick was 3D - all the time!   If there's any doubt, read this article about Rick from Forbes.

Rick - thank you for everything you did - for me, my family and for everyone else you've helped enjoy an easier and healthier life.   Here is a link to the obit for those that would like to read more about this wonderful gentleman!
http://www.kentucky.com/2013/08/23/2782221/railroad-entrepreneur-rj-corman.html

Sunday, August 11, 2013

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


Tuesday, July 9, 2013

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.


- Posted using BlogPress from my iPad

Tuesday, July 2, 2013

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

Monday, June 17, 2013

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

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! :)

Friday, April 12, 2013

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

Friday, March 29, 2013

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!

Thursday, March 28, 2013

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.  

Wednesday, March 27, 2013

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.

Tuesday, March 26, 2013

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!

Monday, March 25, 2013

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

Wednesday, March 20, 2013

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.

Monday, March 18, 2013

SCT Day 48 - not too much change

I'll be a little more analytical in this post.  I've been trying to monitor and notice changes that are occurring and whether or not they are caused by the acupuncture.  I've also been trying to sleep - again, for clarity, I can get to sleep, I just can't sleep for longer than two hours at a stretch.  I won't get back out of bed but I will roll over, look at the time, move, and then fall back asleep.  Not since January, when I entered the hospital, have I been able to sleep longer than two hours.

The weekend was busy, as usual.  We had an early morning, just above freezing, baseball practice and I tried to help coach but wasn't doing to well running (well more like jogging, sort of, I guess really speed walking) those missed fly balls.  But even with gloves on my fingers were just too cold.  Then one of the mothers started talking about her husband home with a fever and I realized I should probably be a bit careful!  While my son was away most of the day at the Atl10 basketball championships, the wife, daughter and I went to see the school play: The Sound of Music.  So well done but this lack of sleep is making me a wimp.  I almost cried multiple times throughout the night as I kept thinking what it would be like if my son or daughter were up there on stage (it was definitely SOM, don't think "King and I" would have caught me like that!)  So in addition to being Monopoly's Water Works, my feet and calves were also singing by the end of the night.  But I had a plan.  I bought Benadryl and was going to try that as a solution to knocking myself out.

It didn't make any positive difference.  As a matter of fact, the only difference it made was it gave me diarrhea.  That made for a fun Sunday start!

So back to the neuropathy, I feel like the acupuncture has put focus on the pain and has caused it to be a bit worse in some respects.  This, I believe, is a good thing, but tough to describe.  It's almost like the body is identifying the points of pain, and making them burn themselves out.  Last night I was up around 6 times from 10 till midnight.  Throughout the rest of the evening I found that if I was on my back I would sleep for about two hours.  On either side it was 45 min to an hour of sleep at most.  Perhaps this has something to do with my sleeping ability as well.  I'll bring this up w/ the acupuncture doc on Wednesday.

On the sleep front, I'm just going to have to power through it.  I'd like to do some exercise or stretching but just can't focus and can't get up in the morning to do it.  Today my goal is to work on the blood work spreadsheet as I have numerous people asking for this now!  If I can stay focused and get that done then I may head to work one day and try and get some stuff done there.  It's coming on end of quarter and I need to get work done!

That's it for now!

Friday, March 15, 2013

SCT Day 45 - halfway to 90!

It's Friday again - I feel like a sloth with no motivation and getting nothing done.  I know I'm supposed to be resting and getting better but I would also like to feel like I'm "together" mentally.  And suffice it to say I'm not "together"!

I still have the cold and yesterday was my third day on Mucinex D.  Unfortunately I didn't take it till around Noon and it really does last 12 hours!  I didn't get to sleep till after Midnight.   I then awoke at 0130, 0230 and two or three times after that.  Still congested and cloudy in the head.  Over the night it seems to have settled more into my chest but I think it's just mucus settling and not the cold moving into the chest.  I'm going to be a bit more consistent with the Olbas Oil and Cocoa Butter to help with the feet.  After Wednesday's acupuncture session it seems like things are more prevalent, more focused which means hurting a bit more.  But that could mean that we're focusing the issue towards relieving it. Or it could be my addled brain playing games with me!

The lack of sleep and this cold are getting to me.  I really don't have any focus and can't get things done.  If it takes longer than 5-10 minutes I'm lost.  Writing this post has been severely difficult and I've stopped twice!

More later - going to take a shower to wake up!

Wednesday, March 13, 2013

SCT Day 43 - further update

We have a new pope - and hopefully he can cure my cold as I was wrong this morning, it's not gone away.  I broke down and took two mucinex d around 10a and my nose has been running all day long.  So I think I have a few more days of this mess - no fever and nothing else but this sniffling alone is enough to be a pain in the arse!

On the sleep side, obviously the cold didn't help with the sleep.  I actually did feel like I slept better last night (which is why I thought the cold was going away) but I don't feel any more rested now.  I did meet up with my acupuncturist today and she obliged me by taking a photograph!
You have to look closely as the 'white' part you see is simply the 'holder' for the acupuncture needle.   I told the Doc about the issues I'm having with neuropathy and how I believe that's affecting my sleep.  There are four needles placed in the webbing between my toes.  Two on either side of my ankle, two in my foot and one on the top of my ankle.  You can't see it but there are more further up the leg. There was also one in my elbow.  All of this was repeated on the left side.

What you see in the picture is one electrical circuit.  There's a second, you can only see at the bottom of the photo.  Again, this is repeated on the other side of my body.  The hope is, by sending an electrical impulse down the pathways I can re-balance my Chi and clear any blockage that is causing the neuropathy in my feet.  This is a very uneducated description and the Doc would probably say I'm wrong in some way but that's my story and I'm sticking to it!

Enjoy the photo!

bill

SCT Day 43 - just an update

I believe the cold is on it's way out.  I slept a bit better last night but was still up a minimum of 6 times.  But I was in bed around 9 and not up till about 630.  that's it for now.

Tuesday, March 12, 2013

SCT Day 42 - first cold of the winter

I took nothing last night and I was back to my old ways.  However, on top of this, I've gotten my first cold of the season.  Just left a message for the NPs to see if I can take a mucinex or similar to clear up the congestion.  The post nasal has left the back of my throat raw as well.  I slept with a mask last night just to keep the humidity when I would breathe.

The neuropathy is still there, nothing new to report on that end and I'm back for acupuncture tomorrow (Wed).  So aside from referring to myself as his lordship, nothing much has changed.


Monday, March 11, 2013

Lord William The Bald!

So I received notice today that I was no longer allowed to refer to myself as William McHugh. I now am required to refer to myself as Lord William - I added "The Bald" part.

I've not been knighted but compliments of my mate PJ, I now own a plot of land in Glencoe, Scotland and can officially call myself a Lord. You can google "56.6279234677418 - 5.30908752335155" and find where my plot is located. I can now get pens and stationary with my "Lordship" nicely emblazoned! I'm also allowed to visit my plot whenever I like. I actually have been right by there when I was younger (my mother's side is from Greenock and was part of the Fraser clan).

At some point I will venture over and see if perhaps I could camp on my plot, my new hearth, my (and I quote) "precisely defined as a plot one foot by one foot...."

I will have to check with the other Lords and Ladies to see if can camp on their neighboring hearth! With gracious thanks and fondest memories of my new "home", adieu!


- Posted using BlogPress from my iPad

Location:Glencoe, Scotland

SCT Day 41 - not much else to say

It took a large latte with an extra shot to get me out of the Ativan funk.  I can't say I felt like I slept better but I felt like a noodle most of the day.  And yesterday was all basketball, all the time.  Got Dilyn home from the 'banquet' around 8p and I was in bed by 9p with 2 mg of Ativan under my belt!  Didn't catch what time I took them but I was up at 1030, 130 and a few other times on that as well.

I'm going to try and sleep with nothing tonight - no meds - and see what happens.  The neuropathy is still there and my next visit w/ the acupuncturist is Wednesday.  For now, i'm having another coffee to try and keep my eyes open - I tried to take a nap and that didn't work either.  what a mess!

cheers....bill

Sunday, March 10, 2013

SCT Day40 - duuudddee!

Took 2 Ativan last night. I did wake up to turn the tv off and one other time. Got up this morning after 7. And in still stoned. I think I slept better burning still stoned!

Going to give this one more night and then try without. For now it's basketball championships all day today. Tonight ill try to watch the IRL/FRA match! No spoilers please

Sorry Amanda, I'm basketball today so no rose this afternoon.

Saturday, March 9, 2013

SCT Day 39 - Ativan 1.5

So I cut back to 1.5 last night as I felt the night before was too strong. Well I woke up at 130 and then a few other times. Once with an unbelievably dry throat.

So I'm going with two tabs for now (2mg) and will ride out that wave for awhile and see what happens. I need to start getting something!

Bye all.


- Posted using BlogPress from my iPhone

Friday, March 8, 2013

Various Pix!

Yesterday I got a coffee discount as the maker loved my hat!  Had to show it here!

I then me a friend for lunch - a 'lunch' place called Tiffin Walla - I knew what a Tiffin was so I thought it would be a good idea, the place wasn't dodgy (A rating) and I'd been told the Dosa's were great.  We started w/ pakora's and samosa's (which were smothered with sauce, an interesting way to have a samosa).  Then came the dosa - for reference, the fork is normal sized and the plate on which the fork is resting is a regular 'salad' plate, just smaller than a regular entree plate.

Lastly, a pic for Bob who just returned from his transplant.  Hopefully his wife Amanda has a few of these tucked away for this weekend.  Give the man a meat pie and a drop of the sweet nectar to enjoy the rugby! 


SCT Day 38 - The Ativan One Two

Yesterday I spoke to my friend the Nurse Pract, gave her the background on what occurred the prior night what I felt and what I knew had happened.  I was giving her the background and not expecting her to up the ante but she said go ahead and try two (two 1mg tablets) and it seems like that may have been the number, plus some!

I've not confirmed with my wife yet but I closed my book (iPad) 22:49, my tweet stating I had taken the Ativan was at 22:20.  When I put he iPad down I didn't fall straight asleep.  I was paying attention to what was going on, trying to be "scientific" and evaluating the effects as they occurred.  Lying in bed you don't necessarily have the same perspective (less dizzy, drunken feeling).  But as I lay there I did notice certain twitches occurring.  Almost like a nervous twitch or energy build up, my leg or my hand or finger would twitch.  I'm bringing this up as I had a similar occurrence while doing acupuncture.  If I started to sleep, i would get a shock in my left leg, waking me back up.

It's almost like my body is saying the neuropathy is here and for that reason you can't go to sleep.  However, Ativan packs a 1-2 punch and it wasn't long before I was out like a light.  I'm not aware of any Ambien-style side effects, but I didn't see a clock till about 04:40 and ended up sleeping in till about 06:10.

I know that Ativan is short lasting but I still feel a bit drugged.  I was quite impressed that I carved up half a melon and an entire mango and do not need even a band aid!  In the end, I'm marking this a win but we'll see how the rest of the day goes.  I'll speak to my friend and potentially drop back to 1.5 tabs tonight.

for now - sweet dreams!

Thursday, March 7, 2013

SCT Day 37 - Ativan vs Ambien

So here's the big compare!  As mentioned, I got the Ativan (Lorazepam) yesterday and the dosage calls for 1 tablet every 8 hours, max three tablets per day.  Well I'm only taking it at night, not during the day, so do I take one or two, to knock me out?  These are 1mg tablets (sometimes they're given in .5mg tablets).  I tried to track the experiment via twitter which really didn't go over so well but here are my posts.


 taken. Will try to document when I wake up 

 finally put book down 10:11p up at 01:20 and up now for potty 02:32    


bill mchugh ‏@PromotingGHL
 I woke at 5:54 not sure how all this played out and how well I did. Got to make the donuts!    


By 5:54 I forgot I was tweeting about Ativan, not Ambien!  Ativan is supposed to be a quick acting drug, offering a very calm and relaxed feeling that will help you fall asleep.  Taking too much will leave you not caring about much and being very clumsy ("clumbsy" as noted in one google search).  I spoke to my friend the NP and she advised one tablet.  Noting the time frames above, I took the Ativan at 21:43 and didn't put my book down till 22:10.  I actually felt a bit like my heart was racing.  I didn't feel 'drugged', drunk or anything similar - just tired.  So from 22:10 till 01:20 is about three hours.  From 02:32 till 05:54 is another three hours.  I don't remember getting up in that last bit but it is possible. 

One other note, thanks to Amy G via Twitter who said she had similar sleep issues for the first two months following her SCT.  So it gives me a time frame and expectation to look at.
I feel better today than I did two days ago (coming off the Ambien hangover) but still don't necessarily feel like I've had a full nights sleep.  I'll reiterate this to my NP to ask if I should up the dosage tonight or just go the way I'm going.  I also don't feel much difference in the p/n but I haven't gone on my walk yet.  Will know better after that.  For now, off to the showers and then off for my walk before the real storm hits today!  Supposed to be rain and snow and 40mph winds all day - what fun!
On a side note - Bob, the MM patient in the UK, is being released today, day 14 - congrats Bob.  He'll be home to watch all the rugby this weekend.  I, however, are limited by what BBC America allows me to watch.  This weekend it will be Ireland/Frahnz and we will be wearing our green, WHEN we get to watch the match.  This weekend is also the 4th/5th grade intramural basketball championships.  Dilyn has a game on Friday and if they win they have a game on Saturday, etc.  If they don't win, we'll have games to watch on Saturday, etc - all of it ending in a big event on sunday in the parish hall.  
I am SOOOO excited! :)