Thursday, January 31, 2013

SCT mid-stream Summary

When I got on this pony I knew I would be dealing with Melphalan and with getting my own stem cells back.  I knew there would be some other things but I was NOT prepared for the plethora of drugs that have come my way.

Melphalan - that's the chemo that kills everything.  I arrive on Monday and get my port put in (by three lovely female doctors that rock me in and out of there in minutes).  Once the port is put in we can do the Melphalan.  But the Melphalan also needs a prep-drip so in addition to Saline there's...
Decadron - the dreaded steroid that will make you "kick the cat" re-enters my life along with...
Benadryl - to prevent potential allergic reactions
Ativan - a sedative - and also fun if you want to watch pictures on the ceiling when there really aren't any pictures!

This all happens on Monday evening and I need to wait 18 hours before I can have the transplant of my stem cells.  So sometime late morning on Tuesday (my Day 0, aka Birthday) they come in w/ the big red squirt gun.  this is one of three tubes that have been thawed (and I can't figure out how but they originally were yellowish in color!)  Again, we get pre-transplant prep: Dec, Ben, Ativan plus...
Zolfran - anti fungal
Accyclivir - anti viral
Levaquin - anti biotic and....
OxyCodone - pain relief, really powerful pain relief!

And then the actual transplant begins.  This is a "push" where the doc is connected to your IV w/ this syringe and they slowly push the plunger thus pushing this straight down into your veins.  And you feel it - it's like a black pepper irritation in the back of your throat.  Sort of a tickle that will make you cough but I placed it as pepper.  This feeling is directly relevant to the speed with which the doctor is pushing the plunger.  I tried a popsicle which seemed to deaden the peppery feel.   But all of this was apparently providing great entertainment for the NP and the RN as she walked out of the room asking the RN, how much Ativan did you give him?  He's seeing things on the ceiling while sucking on a popsicle....

And I was - there was a daddy long legs (mosquito hawk) on the ceiling that had long flowing antennae like the cockroach from WALL-ee and he was making cocoons and moving around the whole time while the NP was asking the other nurses to see if they could see anything.  

This process took place in two installments and i had the same fun in the second.  Needless to say, the Ativan is on the charts but not given going forward.  The OxyCodone was the other item to help make things easier.  This was really to relieve the pain in the port that was put in since the local had worn off. This also helped me make it through the night.  Lil's steak couple with corn and carrots (which can't really be miserable!) rounded out my night.

But the next day (Day 1) I felt like I'd been hit by a Mack Truck.  I feel like the list of "preservatives", etc that were mentioned above fully explains my feelings.  I've finally started eating something today but I still don't have a real taste for anything.  But at least the prune juice worked - that was a major accomplishment!

Day 2 - 0441

Feeling better today. Getting decadron just before bedtime isn't the best. But we offset with OxyC which let me crash.

Still couldn't sleep more than on or two hours at a time. Going to try and catch a few more hours now and be more productive later!


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Wednesday, January 30, 2013

Day1 0835

Today is a day of sleep. The docs say I'm doing great and I "smell" like I just got new stem cells!

Not much of an appetite. Had a milk and two bites of banana and that is it. Sippin some smart water but going back to sleep!

Just got told that if I want to get put and walk around then id better do so today or tomorrow as once I get the pink sign on my door I'm not allowed out!

But right now - sleep!



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day1 4am ramblings


i think i slept better than the night before but am still worn out.  i am getting Zorfan anti nausea med along with a few other things.  i dont feel nauseous yet but i've also not tried to eat anything.  But the part (not for faint of heart) is the protection you have to do from various fungal type bacteria that could form.  something you deal with all the time but your body fights it off.  these bacteria occur in spots where its dark an humid - armpits are one - i'll let you guess the others.   theres a mixture of two ointments that need to be placed around one area and then a powdered substance, like baby powder that needs to be applied to the others - every four hours.

if it wasnt 432 i probably sharing this but i'm tired and need to do something.  and i knew Mike my fellow MM'er would love this post - go get 'em Mike!

bill

Tuesday, January 29, 2013

My Birthday!

They tell me that when u get your cells transplanted it's now your birthday. My stem cells were transplanted in two steps, one around noon and the other around 1530. During both processes I was given a steroid along with Benadryl and another, drug who's name escapes me but serves the same purpose as a qualud or similar. I was passed out when Lil came to see me and when I did talk it was gibberish.

After Lil left they came to check on something and I sort of had to wake up but I was only talking more gibberish. They came to prep me for the second round after I was finished eating some lunch (some of which was un-eatable)

But let's describe the actual process. We walked through the Melphalan process. For the stem cells started with the premed that had the steroid, allergin, and nausea medicines delivered via and IV. The Benadryl helps fight any reaction you may have to the preservatives used where the steroid picks you up and the nausea meds keep you "right".  They also threw in an 'adjuster' sort of a "mommy's little helper which really put me over the edge.

The cells coming in are more pushed than dripped of an IV.  You can feel them as they are very cold.  However you will immediately get a sensation in the back of your throat that is difficult to explain.  Some call it ticklish in the back of the throat.  To me it was almost like pepper in the back of your throat.  It goes away as they do the push and I found that a popsicle (yes, back to popsicles) also helps.  depending upon how many tubes you go through is how long you'd need stuff.

I'm done now, no nausea and good blood pressure, etc.  I'm snacking on Fruit Loops as someone had recommended!  My wife brought in a steak tonight so good eats.

But on to the title - I was told that the day you get your stem cells back is like your birthday.  I was also told that I am on a "neutopenic" diet for 100 days.  Just like a baby is given foods in very basic manners till they can get 'up to speed'  So happy birthday to me!  Everything looks good, no D, regular BP and oxygen.  Will get labs back shortly.

On top of all of this - we are about $1500 short of my target of $50k as of my first transplant.  Thanks to everyone that's reading and thanks to everyone that made a donation.

bill

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today is Day 0


This means it's the day I get my old stem cells back - that's the start, the beginning, il primo - wait, didn't i just do this with Yin and Yang yesterday?
So getting the bad stuff in (aka Melphalan) is a 15 minute process.  you do have to chew ice for 90 minutes but mid way you get the Melph for 15 minutes.  We don't know how long the process will take with my old "good" stuff (the born on date was Jan'10).  They don't know if it will be one transfusion or two.  They don't know if I have a big bag of cells or a little bag of cells - i mean they've all been in the freezer.  They are quite sure these are MY cells but until the pull them out of the freezer they won't know how big, etc.
More importantly, today is all about watching.  Will my cells work without problem, will there be issues, etc.  What this means, I just found out, is that I will be in a bed and hooked up to wires pretty much all day.  I'm waiting for them to come in and disconnect me from the IV and flush my lines so that I can go take a shower.  I may  not actually smell but to me, I stink!
more later


3 or 4


Set the way back machine and see if you can remember the bugs bunny cartoon and Pete The Puma saying how many lumps he wants. That is me - "what time did you wake up?", "How long did you sleep" - answer to both?
"Erreewww, about 3 or 4"
And it feels like bugs bunny is there, with that mallet, ready to knock me back unconscious!  So why am I up typing this and not succumbing to Bugs' knock out punch?  BECAUSE!
That magical word used by adults to kids for many many years.  I use it on my daughter to unsuccessfully attempt to end whatever meaningless argument we're having (and she JUST turned 6).  There are too many reasons as to why I'm up and I'm not going to last much longer, the eyelids are getting heavy!
One of the many reasons was Bladder Boy!  With Liquid Man (yesterday I consumed 3L of smart water and about 1.2L of gatorade not including the two 1L bags of saline I've gone through) comes Bladder Boy but here at "the office" we need to keep record to ensure strong kidney function.  We need to confirm what goes in as well as what comes out - to ensure there's a balance, a yin and yang of urine, a Lucy and Ethel of the potty.  This all makes sense - liquid in, liquid out - and they give me two 1L bottles.  They also have a seat for the potty (which I've not yet seen) which allows for other capture as one of the side effects of the Melphalan is the big D!
Hey - it's balance, liquid in, liquid out - uck!
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Monday, January 28, 2013

Day -1 cont.

Melphalan done - only another hour of ice chips! My mouth is numb!!!


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Day -1

For the non-MM readers today is day "-1".  In the stem cell transplant process the day that you get your cells back (and autologonous transplant, I'm using my own cells, not cells from a donor) is day "0".  I arrived this morning and around Noon got my port put in.  This is a catheter that is inserted into my jugular and down into the vein from the heart.  It's a 3-porter with each port representing the depth to which it reaches.  An xray was taken and I hope to be able to get and share at some point in the future but the reason I picked up the macbook and started writing is the may MOUTH IS FREEZING!

The melphalan has lots of nasty side effects.  One of which is mouth sores (and I'll get someone to remind me of the name, something like mucusitis).  They've found if that you suck on ice chips and really get them down in there (between your cheek and gums!) you will prevent the melphalan from getting into the mouth.  Sort of like putting the inside of your mouth into a cryogenic freeze.  To acheive this state you need to suck on these ice chips (which aren't really chips, they're about the size of goose shit!) for thirty minutes prior to the melphalan and for an hour afterwards.  90 minutes of continuous ice in your mouth!

You try this!  It's not so easy.

...and they're off!

I've arrived in admissions and have my pager as I patiently await with the masses for someone to claim me and take me to a room up on 11! This place is a madhouse and customer service prevails ("there's a line - you have to wait over there!")
I hit Sbux for the last time in a few weeks and went to Duane Reade for some Smart Water prior to getting a cab. The cabbie misunderstood me and was trying to find 101 Madison rather than 101st and Madison. Then Madison Ave is a mess and bus lanes close off two lanes. And taxis can't drive in the bus lane so we saw three cabs and a mini van getting a ticket.
Being registered now so need to go! Wish me luck! ;)
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Location:Mt Sinai Hospital

Friday, January 25, 2013

PGHL and an Update

I've been offline this week since I spent most of last week prepping for the big cut on Saturday! This week I needed to focus on getting some work done as I head to Mount Sinai next Monday to start the transplant.

I will have more on the subject later but a big thanks to everyone for reading and supporting Promoting Global Hair Loss! As of today we are $48 shy of $41,000 raised for the MMRF. I am ecstatic and expect to easily reach my original unreachable goal of $50,000.

Ill have many more details on the transplant so stay tuned for more fun and excitement. If you want to see pictures from the event click the Facebook page from the link on the right side nav bar!

Bill


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Sunday, January 20, 2013

On my last grappa!

re-post from book!

I used to love "british" time - when you count a 24 hour clock. I know they call it military time but as I look at "2:13" and sip the last grappa of the night I figure I'm allowed to call it whatever the hell I want to call it!

Tonight finishes this chapter in the PGHL handbook. It doesn't finish the book as we had too much fun tonight and did too much "good" tonight! But i expect to be noticeably more quiet over the next week. 

I want to thank everyone for putting up with the multitudes of emails and my requests for money. Realize that all of this is going to the MMRF - an organization that has been making great strides in tying together hospitals and doctors benefitting the research of my disease. There are other groups out there that make an effort, no less valiant, but I chose the MMRF. Whatever the cause, it helped me prove a point. Again, I'll have a blog post with more detail but friends are friends - FOREVER! 

You know a friend - it's someone you can talk to and not have to put up a facade. It doesn't have to be someone you've known for years - it's just that time when everything clicks. And friends are the people that help you get through life - the good and the bad. Over the past month I've been calling in markers on friends I've known for years and friends that have only been little more than acquaintances. Bottom line, they're friends now. And we've raised a bit of dough while doing it.

More importantly - I expected my friends to come through, but I didn't expect the response I've gotten from the MM community. People reaching out to me to say thanks or that they've been through it or that they have family going through it. Thank you for being a new friend.

And I expect, over the next month or so, while I go through the 270 pix my camera took tonite (granted, by a different photographer) and the numerous pix and video (thank you to carlos chiossone for being there) I will also look at ways I can continue to Promote Global Hair Loss.

Tonight was good fun. The video feed worked for all of 20 minutes and then died. I shaved around 20 heads (I even had to do a proper styling on one that caused me to nearly lose a digit!) We raised upwards of $3,200 at the bar and the donation board currently stands $45 shy of $27,000! (that's a clue to donate!) I'll take credit for the idea but I couldn't have done it without my friends - each and every one of you that posted this page, posted my dribble and, of course, posted my pictures! Thank you - all! Friends add the substance to life that makes it liveable!

Thank you for Promoting Global Hair Loss!

Bill

Saturday, January 19, 2013

PGHL NYC Details

Tonight is the night!

7:30pm at Failte Irish Whiskey Bar, 2nd ave betw 29/30th streets

Kids are going first, Dilyn, Mikey and Jack - we will have plenty of pix and, mohawks and of course hair care products by L'Oreal to help us in our endeavors!  If you can join us, great.  If not, I'm trying to setup a live feed, just not sure if that will work as planned but we'll try.

Thanks all!

bill

D-Day

(this is a cut/paste of my Fbook post - this event has taken off! Thank you all!)

Ok - today is D-Day - I've got soooo much stuff to do AND my daughter's bday party is tomorrow! ToysRUs and then start packing up all the crap I need for tonite. Need to test the Google+ connection w/ Baltimore (trying to get up a live feed of the event for those interested that can't make it.) Need clippers, lights, light up mohawks, and I think I'll shave the beard in advance of the night! I can't wait till tomorrow when I work off the hangover, shower the bald pate and not have to worry about coordination!

That doesn't mean I'll shut up but I will definitely be quiet for a few days! :) We're just over $22,000.00 as of this morning. But what you dont know is that doesn't include about $2700 from Hong Kong, $5000 from my company match, a match for the HK donation and about $1500 in direct donations (checks) that haven't yet hit the board. I'm not quoting that number but I wanted everyone to know that $50,000 target is not a false one! Remember, we have Dallas and Boston happening in Feb and still need to coordinate DC and Phoenix.

Pass the word - Promote Global Hair Loss! And for those recent followers fighting this disease, let's have some fun like I discussed!

to donate: http://bit.ly/PGHLdonate

Thursday, January 17, 2013

Almost Halfway

Promoting Global Hair Loss has passed $19,000. With my company matching were at $24,000 or almost half my $50k goal!


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Wednesday, January 16, 2013

Top 20 - Turkey Day!

I have been tweeting my "Top 20" posts - posts that I consider to be my best or funniest and realized I hadn't been posting these on my own blog!  Now granted, we are well past Thanksgiving but when re-reading this post I wondered who the author was as it certainly didn't sound like me!  Till I got to the end.  I'll leave it to that...enjoy!
http://bit.ly/V3pqcR

PGHL Just Broke $18,000!

Promoting Global Hair Loss just passed the $18,000 mark in funds collected for The MMRF.  Events happening this weekend all over the globe.  See my PGHL page for details! 

If you wish to donate click here: http://bit.ly/VkWs9J

Monday, January 14, 2013

What to post?

I've been spending so much time Promoting Global Hair Loss I've not really been updating my blog with what's going on!  It's been fantastic planning and getting in touch with so many people and getting support from so many others.  I know the events will go off and we'll raise a fair amount of money that will go towards Myeloma research.  I can only hope that it helps in some way as I would sure love to find a cure!

Today is the 14th, 14 days from the day I enter the hospital for the BMT (bone marrow transplant).  For those uneducated readers I am have an autologous transplant.  Like a book I wrote about myself, an autobiography, the auto transplant is a transplant with my own stem cells.  So back in Jan/Feb of 2010 I harvested my cells and they put them in a freezer.  These will make a re-appearance on Jan 29!  Here's the quick details as I can remember them! :)

I arrive on 28 January and will have a "port" put in.  Where I couldn't get much details this is similar to the catheter I had inserted for the harvest but I've been told it's not as big (wide or long) and is an easier insertion, potentially bedside.  That surprises me but hey, we'll see.  That afternoon I will get the Melphalan which will proceed to attack all my cells, good or bad!  The melphalan will stay in my system for 12 hours and everything exposed is expected to be annihilated.

The next day is DAY 0 - By afternoon the melphalan will be out of my system and the port will be put to good use, giving me back my recently thawed old cells!  From that point forward I wait.  I get diarrhea, mouth sores, lack of appetite and other fun things - while I get to wait!  Around Day 6 I'm at my worst - where the melphalan has been successful but the new stuff hasn't quite grown up.  By Day 10 I should be approaching normal and sometime between day 12 and day 15 I get to go home (barring any complications.)

Food - I can have anything pasteurized.  I can have steak/lamb, when cooked at home, packed tight and kept refrigerated.  I can have vegetables, washed, roasted of course.  I can have yogurt (believe it or not) so I tweeted that I can have my Chobani and Chobani favorited my tweet!).  I can also have frozen fruit (if pasteurized).  I'm saying all this as it was recommended - I may not want to eat but when I do, I do NOT want to eat the hospital food!

Visitors - I can have visitors - I may not want them but I can have them!  No more than two at a time though.

Serious note - at some point I may need to have either blood or platelet transfusions.  This isn't expected but has happened in the past.  My boss is already pining to do the platelet donation (he does this often) and they can be directed specifically for me in the event there's a need.  I do not have the details on that process (to donate blood or platelet specifically to me) but will post details as a comment to this post.

For now - I'm done with blogging and done with PGHLing!  Good night!

Saturday, January 12, 2013

PGHL On A Roll!

Ok - that's not a sandwich!

Promoting Global Hair Loss (PGHL - @PromotingGHL or #PGHL or http://on.fb.me/13hBqMw) is on a roll!  We've currently raised over $9,500 for The Multiple Myeloma Research Foundation!  That doesn't include the $5,000 I should get from my company matching program!  If you've not heard about this, here's the short story.

I am going in for my bone marrow transplant on 28 January at Mount Sinai.  I swore the last time that I lost my hair I would lose it of my own accord - and bring down all my friends!  Now I have a few friends in a few different places so this time I decided I would be Promoting Global Hair Loss (aka PGHL, etc as stated above!)  There's a page on the blog with some details but more on the Facebook page (again, referenced above).  I've been amazed at how well and how quickly this has all come together.  I'm not quite at my $50,000 goal but I think we might actually get there - I'll be in or through my BMT but we'll get there!

In New York City we have a group: myself, Bert Oberlander, Dennis Hawkes, Bill McHugh Sr, Eric Anahory and I believe my brother.  There may be others but I can't keep up with it all!  We're doing the deed on 19 January at Failte on Second Ave in NYC.  We're going to try and have a web link open so people can tune in (but I'm not sure if I know how to do it correctly! :)

In Hong Kong we have Chris Ng, Murray Seargant and Elin's 'other half' (I don't even know his name!)  This is all happening on 18 January.

In Middlebury, VT we have Harry McEnerny and even his wife cut her hair short (from shoulder length) to support!  Also happening on 18 January.

in BALDimore (Baltimore, MD) Max's on Broadway, in Fells Point, is hosting a big event with PR people extraordinare, Randi, Andrea and Brent!  This is on 19 Feb and we will be trying to have a link between BALDimore and NYC!

In Charlotte, NC we have Elaina Rego who hasn't shave her legs since mid-December and will do so on January 19th!

In DC we have Rob Traister who's willing to lose his hair for the cause but we're desperately trying to find a location to do so - if you have any connections please put us in touch!

In Dallas we have Craig Storey who's doing his bit at the Londoner Pub on 24 February and my cousin will join as she's there!

In Boston, my god child Harry and his brother Jim will be hosting an event on 25 February to do the deed.  

Zurich, our foreign exchange student (many years ago), Hoss (Hosskuldur Hauksson) is taking the plunge and giving us a European flair!

I still have some irons in the fire for the UK but nothing solid yet.

All of this was put together in less than a month and was done by friends!  Yes I spent a lot of time on  Facebook and Twitter but they picked up the pieces and made it a reality!

For those that are in my boat, diagnosed, relapsed, heading to a BMT or went through your own BMT at some point, please pass the word.  If you're in any of these locations please join and tell me when you're joining so I can let the local hosts know!  If you have any crazy friends that want to host their own event then let me know and I'll add them to the list.  

My goal was to raise money for The MMRF.  But secondly, I wanted to get the word out - about MM, my issues and to make people aware.  So pass the word and lets Promote Global Hair Loss!

Bill

Tuesday, January 8, 2013

The Start of the Process

My bone marrow transplant begins on 28 Jan - a Monday (queue the Bob Geldof song).  But the process begins tomorrow.  I head to Mt Sinai tomorrow for a series of tests in prep for the BMT later this month.  My schedule tomorrow is as follows:

0900: Pulmonary Function Test - 1468 Madison Ave
1000: Echocardiogram - 1190 Fifth Ave
1100: Labs (blood drawn) - Mad Ave, 4th floor
1130: EKG - Mad Ave, 3rd floor
1200: Pre Transplant visit with Nurse Coordinator, 3rd floor
1400: Evaluation with Social Worker, 3rd floor
1430: Evaluation with Dietician, 3rd floor
1500: Chest X Ray - 1176 Fifth Ave

The rest of the day is open - yippee!

Then starting on Thursday I start my GlutaSolve regimen.  As a preface, in advance of a rugby game I always had breakfast (beans and toast) and then headed to Football Club and had a Power Bar, two Pocari Sweats and a black coffee.  I always left time to clear out what needed to be cleared but the point here is to prep the body for a days worth of physical work.  Gatorade promotes themselves in this manner.  So when I heard about the need to have GlutaSolve and some pro-biotic in advance of the BMT it was my thought process that we were doing the same - prepping the body for a large amount of physical work.

However, as I've looked further (you can't find GlutaSolve on Wikipedia but you can find L-Glutamine which has some details.  It's easy to understand why I thought that, "...may become conditionally essential in certain situations, including intensive athletic training".  But then I continued reading, "...or certain gastrointestinal disorders."  Additionally you'll find, "Evidence indicates glutamine, when orally loaded, may increase plasmaHGH levels by stimulating the anterior pituitary gland"  As you read on about ProBiotics it's generally used to kill all the bacteria inside - inside your intestines.  

So I'm not looking to "Get the Fuel Inside You" (as I think the Gatorade commercial states) I'm basically taking human RotoRooter!  So I'm really looking forward to how I'll feel by the end of this weekend after taking my GlutaSolve for a few days and staring on the Pro Biotics!  This will be fun.


For clarification - I'm on both of these for 14 days total (twice a day) but start the GS 18 days out and the Pro Biotic 14 days out.

remember - we're Promoting Global Hair Loss - events in NYC, Boston, VT, DC, Dallas, Charlotte, 2 in Hong Kong, Zurich and potential in Baltimore and Phoenix!  Who else wants to host an event?  Search "Promoting Global Hair Loss" on FaceBook for details!

Sunday, January 6, 2013

What's the right way to react?

It's 0130 and I should have been in bed about 4-5 hours ago.  The Pinewood Derby is over an my son did a great job not getting upset as he didn't walk away with the big hardware though he did get the Best Looking in his den.  As I have the last three years, I was the MC for the event only because I can and I enjoy it.  Hell, I used to do it all the time in front of adults (granted, drunk adults,  but adults all the same).  But now it's well past my bed time and I poured that glass of grappa like it was a glass of water so I'm up and thinking well beyond the legal limit!

I've not really told the Cub Scout crew (some of the parents know but not all) about what I'm going through and the fact that I will have extremely short hair in the next week and a half and be absolutely bald in the next six weeks.  But the few that know definitely came over to "check in" today and I had one that came close to breaking down (god bless her heart!)  I'm fine right now but after Jan 28 I'll be a mess for a few weeks, but I expect to be fine then (just a lot colder on top, where I used to have a head of hair!)  But talking with my folks afterwards, it's tough to gauge how to react?  I don't have any qualms talking about what I'm going through.  As witnessed at today's Pinewood Derby, I can talk for more than three hours straight (without a bathroom break I might add!)  But how do you initiate the conversation?  I actually WANT to talk about it - I want you to know - I want you to not be worried as I know I'm going to pull through this with flying colors!  I have no doubt of that.

However, as the old saying goes, you don't mention politics, religion or the C word (and not see you next Tuesday!)   The world has changed and the C word carries multiple different meanings, some of which are really bad.  But at the end of the day, too many people don't know or understand the difference and difficulties between the various types of cancers that could occur.  Leukemia/Lymphoma are really bad, but if you get into complete remission for five years you have a good chance of not having to deal with it ever again.  Pancreatic can be a term of months (enough about that).  There's no cure for my disease.  There is a ton of research and a lot of things going on that point towards great strides related to my disease or similar diseases that can mean good things for me.  But at the end of the day, unless you've dealt with it directly (and I mean directly) you probably don't know much and therefore assume the worst!

I'm not worried.  I'm going to get through this, with bells on!  And I don't mind talking about it - to anyone!  With that being said, I promised myself that the next time I lost my hair it wouldn't be in vain. So if I come asking for money (not for me, but in this case, the MMRF) then realize that I'm doing so because I want to take action, raise money and finance the groups that I think may actually find a cure!  However, I don't want you to feel pressured.  Going back to the scout group - I consider myself lucky, with the roof over my head, the job that offers great benefits and the kids that drive me crazy.  And I know there aren't a lot of people that can claim the same level of comfort.  I don't want you to donate as you feel you have to.  I also don't want you to feel guilty if you don't.   I have an issue and it's MY issue.  There are a lot of people that I know that have the same issue (disease-wise) but it's still their issue).  But everyone has their own issues and priorities.

And people come up and thank me for MC'ing the event today, especially with "what's going on".  As much as I appreciate that, I do what I did today for two reasons: 1) I'm a vain, self absorbed ass that enjoys having a mic and talking out loud (please read that line as a joke!) and 2) I want to set an example for my son and daughter on how you can give back.  I enjoy doing it and I enjoy making sure the kids have fun at an event where, during their race they are having a grand time but for the hour between that race and their next race they're trying to keep themselves entertained!  I had a young boy ask me, after the race, when I finally got to use the pisser, while washing hands, "hey - aren't you the guy doing all the talking?"  I said yes and he responded, "what...do you work here"?  I said no and he said, "you must make a lot of money doing this otherwise, unless your volunteering or something".  He left so I couldn't respond.  But with him, and a few of the boys and parents coming to say thanks...it's difficult.  How should I react?  Where I understand you're saying thanks for helping make it an enjoyable night I don't think I can get you to realize that YOU"RE making it an enjoyable night by listening to me!

Sure, I got a load of issues right now.  For the moment, I'm fine.  I don't feel sick and don't expect to feel sick.  But I have the c-word - most definitely.  But i'll be rocked come the end of Jan, start of Feb...then I'll be bad off - but only for a short while.  After that, I'll be back up in front of the kids, sporting a shiny pate and making jokes about it.  I do it cause I like to - it brings me joy.  But if the idea, the thought, the process, rubs off on a few kids to say, "that glass is half full", then I feel I've been a benefit as well!

What's the right way to react?  Whatever way feels right.  If it don't feel right then it's most likely NOT right!  I do these things for me, for my kids and for my friends.  I've got a platefull of crap right now and I can stare at that or can press forward and deal with the 'control-ables'.  For me, that feels like a better use of my time.

As always, thanks for listening and if you ever need an MC just get me a mic!

Cheers...Bill

Saturday, January 5, 2013

PGHL is moving along!

We've passed the $6,000 mark Promoting Global Hair Loss! We now have events in Boston, Middlebury, VT, DC, Dallas, upstate New York, Zurich, Switzerland, two events in Hong Kong and I've even got a friend in Charlotte, NC that isn't shaving her legs until the 19th of Jan! My goal is to raise $50,000 for the Multiple Myeloma Research Foundation and I think we will get close. If you know anyone that wants to help have the, reach out to me directly at promotingglobalhairloss@gmail.com. They don't have to shave their head, they can host a guest bartender evening, hell, they can sell lemonade on the corner - I don't care as long as we raise funds for the MMRF. If you're overseas and want to do a local charity I'm fine with that as well. I just want a cure for this disease and anything I can do to move that along I will do.

Thanks in advance for your help!


- Posted using BlogPress from my iPad

Tuesday, January 1, 2013

Myeloma Blogs Request


This post is directed to those of you monitoring the Myeloma Blogs.  Thank you in advance for all of you that have been reading my blog over the past few years.  I made a decision when I went in for my harvest in 2010 (and lost all my hair) that if I was going to lose my hair again I would collect some money for myeloma research.  Well I'm scheduled for my bone marrow transplant on the 28th of January, which means by February I'll be bald again.  So in advance of that, I'm Promoting Global Hair Loss!

If you have any friends that would be willing to help raise funds for the Myeloma Research Foundation or if they want to raise funds for a local organization please have them get in touch with me at promotingglobalhairloss@gmail.com.  I'd like to get as many fundraising events as possible going on the same weekend - all to raise funds to fight multiple myeloma.  The weekend I've scheduled is the 18th and 19th of January.

I have a page on my blog with details at this link.  I also have a Facebook page (public, no need to be a fbook member) with details on events already scheduled.  The link is here.  So far, I'll be shaving my head (along with a few friends) in NYC and I have others in Boston, Vermont, Washington DC, Charlotte, NC, Hong Kong and Zurich.  I'm trying to confirm other locations in the UK, Hong Kong, Baltimore, MD and Phoenix, AZ.  I'm hoping to get some friends in Australia and Singapore as well.

More importantly, I'm hoping to get some new friends via the group of people that have been fighting this disease and who may be able to help coordinate events in their locale.  Again, my efforts are directly benefitting The Multiple Myeloma Research Foundation (my donation board is here) but I'm happy to promote any event for any myeloma or cancer research that will happen that weekend.

Thanks in advance for everyone's help!

Bill