SCT - Your Numbers

(updated as charts weren't coming through)
Ok - I definitely feel like I've rounded a corner and am feeling better.  I have the ability to focus and I can actually put effort into typing things as well as inputting my daily numbers to I can be monitoring how I'm doing.  As a recap, the goal coming into this procedure was to kill my existing infrastructure (white blood cells, etc.) and then replace with a version that had been through my RVD cocktail a few years back.  So I wanted to give everyone an idea of what it meant for your numbers to drop.  This is a totally non-medical description and will be fraut with mis-speaks - but hopefully it will get the point across.

First, you have your WBC (white blood cells) the parts of your body that fight diseases.  These 'proteins' are what diagnose you as having MM.  In my case I'm IgA on the protein and Lambda on the free light chain.  So my IgA goes rampant and then dwarfs the other two (IgG and IgM).  If I kill all of these off then who's watching the store?  When I cut my finger or if I get a nasal infection?  After the RVD my cells were beaten back into submission and then the Cytoxan killed off most of the bad stuff and then it was harvested and put in a freezer.  The freezing process also is bad for the "bad stuff".  So the hope is that what's put back is back in 'normal' operating procedure and wont run rampant again.

The risk you run is that while all this is being done the chemo is affecting other aspects of your body and could cause other issues.  In addition to your ability to fight infections and bacteria your ability to create blood cells, and platelets could be compromised.  When that occurs you need to a level that is of concern you need to have a transfusion.  So I wanted show everyone what it means with respect to your numbers.

This chart shows you my WBC numbers with green being the normal 'hi' and red being the normal 'low' (and the value of normal 'low').  If you're below 11 then you have an immunity issue and should be concerned.  This is why the door of my room states mask and gloves must be worn.

My Platelets started in normal but have dropped off significantly.  Luckily, 35 isn't a level of concern yet (I believe our real "low" will be 10) and if I can keep that number over the next few days that will be good.  If you had a number below 150 in a normal situation then you're at risk of being able to repair yourself.

Hemoglobin is your red blood cell production facility.  If this were to drop then the need for a blood transfusion could exist.  Luckily things look like i'm keeping up there with where I need to be.  But as you can tell, my numbers are still dropping and so I need to be cautious about what i'm exposed to as well as the bacteria and things my own body produces.

I've not gone into detail on this front but part of my daily regimen is a product called Nystatin, an anti-fungal product.  This needs to be used 4-5 times per day in a variety of manners: mouth wash, swallow; an ointment for the nether regions (to control what gets created there); a powder for the nether regions and under arms (where potential fungal growth could occur.  So it's not just people coming in but you need to watch what you create as well!

These items I hope everyone finds of value.  I hope it's a way of thinking of what you need to watch and what you need to be cautious of when you're in this position.  However, it's also important, and brings me back to one of my original rants and raves, it's important to KNOW where you stand - even when you're healthy.  I was diagnosed with this disease because i had an elevated protein level.  This was a regular doctor's visit and bloodwork.  Nothing special - if you've not been, if your friend hasn't been, if anyone you know HAS NOT BEEN to the doctor in the last two years then take them yourself!

Thanks for reading!

SCT "MUST KNOWS"

It's Day 7 (aka 9 days in hospital. Today my breakfast arrived and looked more appetizing than it ever has. Then I saw it was a bagel and jelly and said I didn't order that. They realized it was for the next room and brought in mine, on styrofoam wrapped in plastic and smelling all the same. I asked why one looks like room service and the other looks like mine and found out the lady next to me is NOT on the Kosher diet.

I asked that they change that now - now that I've been here 9 days! Aaasrrrrggghhhhh!

SCT Day 6 - too tired to update?

Apologies to the avid bloggers that aren't also following PGHL and my regular fbook page. Today was Day 6 and it was pretty uneventful. My numbers continued to drop and I was given neupogen to help maintain some of the systems. Everything seems stable and I am hoping we won't need blood or platelets. I should be moving forwards now and am hoping tomorrow is a bit better. Till then I'm still not eating much and am trying to keep at the anti nausea meds! Here's to an uneventful evening!

SCT Day 5 - numbers defn down

I have been in bed since about 630 last night. I am wiped out and finally got out of bed to just move. I expect today to be a lot of nothing - all day long!

SCT Day4 RUGBY!!!

My day just got better, thanks to BBC America - the Rugby Six Nations is on!  Eng/Sco - i'm not choosing a side, just hoping for a good game and really pissed I don't have a proper beverage within this adjustable bed!

SCT Day 4 - numbers dropping

Boredom has struck and my numbers are dropping so I'm beat.  WBC finally dropped down to 3.2 (from an avg of 6.2) and platelets continue to drop down to 87.  For most of you these numbers dont mean anything, for me, they mean that it's working.  I expect to be lowest tomorrow or Monday (day 5 or 6) and then its uphill from there.  Only risk, being low on these counts, is immunity so need to be cautious, wear mask, etc.   But at least we're on schedule now.  And now, I'm going to crawl back in bed and crash!

SCT - day3 - prune juice ordered

Nuff said!

SCT - Day 3 0646

Nice rest last night. Going back for more. Believe I also need more prune juice - but that will wait! ;)

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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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

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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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

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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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

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

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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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

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!

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

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!

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

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

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

The Dreaded Discussion

So last night, in the wake of present and sugar highs from the recent holiday, we opted to tell the kids what was going on with me and my medical condition.  When you ponder the situation, there's no real easy way to start the conversation.  Yesterday afternoon I was home a bit early and the kids arrived shortly after my return.  All week my son would sneak up on your and yell, "Secret Santa"!  I decided to get back at him as they didn't realize I was home.  I snuck out from the bed room and yelled "secret santa" and my daughter looked at me, screamed, and then continued screaming.  If she was any younger I swear she would have peed her pants!  I felt soo bad.  Until I started the conversation that evening....

"Daddy's going to have to go to the hospital for a little while."  Both kids started welling up and were starting to get upset.  I explained that I'm going to be ok and the lightened up a bit.  We talked about my needing to be in hospital for three weeks and that I'll be a bit banged up when I return but I'll be back to normal shortly thereafter.  We were told to tell them both at the same time as my daughter (younger, going to be 6 very soon) would ask questions my son was afraid to ask.  I don't think he was afraid, I think he would have never thought of these questions, "will you end up peeing out of your armpit?"

I didn't see that one coming!

At the end of the day I think they got it.  We told them it was ok to talk about it with their friends but if any of their friends say something that they don't understand and potentially makes them scared then to come back and talk to us.  We will give them the full answer, nobody else will know as much as we do, no matter what their friends say.  I also explained that I will lose my hair and also set them at ease a bit in saying I lost my hair many years ago.  This was the same thing and I've been doing well for the last three years - no reason to think I wont be the same for the next three years!

I tried to talk Dilyn into joining me in Promoting Global Hair Loss but he's not interested in cutting his hair!  He felt bad and immediately wanted to see some of his toys, give us everything in his piggy bank and sell his sunglasses in order to raise money.  I'll still try to talk him into it but I'm not going to pressure him - however, he'd be a big money raiser!

So the kids know now, I can be open about things - now just have to make sure they don't get scared!  I'm glad they took it as well as they did!

I hope everyone has a great new year!

Bill

BMT is Not Just a Subway Sandwich!

Trying to find catchy titles to encourage readership of your blog has always been one of the things that attracted me to keeping a blog.  Now that I'm trying to post and tweet and write my blog I find I've run out of cool and funny things to say - go figure!

I just wanted to give a quick recap of what I've got planned and take a brief moment from Promoting Global Hair Loss (@PromotingGHL or #PGHL).  On 28 January I go in for my bone marrow transplant (BMT).  The procedure, as I understand it, and in lay persons terms is relatively simple.  I go in on Monday and get Melphalan.  This is probably the most powerful chemo I've gotten to date and I'm expecting the worst.  In a general sense, Melphalan is like a pesticide introduced into your body that only has a 12 hour shelf life.  After 12 hours it's used up and no longer has any harm on the body.  However, during that first 12 hours it's basically killing everything it's exposed to.  So basically all red, white, purple cells that are exposed to the Melph are now dying.  But it takes a few days for them to completely die.  At the end of those few days I have absolutely no immunity - as I've been saying,  a sneeze in Jersey could be the death of me!  On Tuesday my old cells get pulled out of the freezer, put into a microwave and get put back into my body.  Since these cells weren't exposed to the Melph there's no worry but they need to grow.  So while one set of cells are dying off, the other set is just starting off.  I believe it's about day 5 (with Tuesday being day 0) that I'm at my worst and by day 10 I should be coming back to about normal.  By day 15 I should be out of the hospital and heading back home.

Once home I'll need to be in regular contact w/ the hospital and I've not yet sorted what needs to be done to determine when I can actually get back to work.  For now, I need to buy some Glutosolve and ProBiotics which I'm supposed to take approximately 14 days in advance of the BMT.  I go into the hospital on 9 January to go through a series of tests and meetings (nutritionist, etc.) so I'll have more details then.

That's it for now.  More later - till then keep Promoting Global Hair Loss - find a friend to have a party and shave their head to raise money for the MMRF!

thanks...Bill

Promoting Global Hair Loss!

Save the date - 19 January, 2013 (or anytime that weekend!)
We Are Promoting Global Hair Loss!
On the 28th of January I go in for my bone marrow transplant. At that time, courtesy of the Melphalan, I will lose my hair yet again. So in advance of that I'm breaking out the clippers and will raise money to shave it all off! The difference here is I'm calling in all my markers and asking everyone I know, all the world over, to join me. I'm looking for volunteers who will host an event in their hometown to shave their head (or their friends or whomever will let them, as long as you agree that the person must be fully conscious at the time of making this commitment!). I will be raising money for Multiple Myeloma but I'm happy for you or raise money for any charitable cause you deem appropriate (but if you can't think of one, use mine!)
I'd like someone (multiple someone's) to do this in Hongkers - c'mon guys, you know who you are and what better way to end the rugby season! I'm also looking for someone in Switzerland (though I know this will be more difficult!). I know I have someone in Vermont and I expect I may get someone in Boston. I need to get a Brit (in London but expats in NYC can join me!). The most impressive offer I have gotten thus far is from North Carolina where an old high school buddy has agreed to NOT shave her legs till the 19th and then raise money to get them clean!!!
I will create a board where you can donate to the myeloma research foundation and you will be able to donate there or feel free to go and create your own board. I will also post details on how to take advantage of company matching! I will also have a page on my blog as well as a page on Facebook. The intention is to have this be one big party with pictures, videos and anything else we can do via fbook and my blog!
If interested in joining the party, even if I have no idea who you are, please reach out here or on Facebook and I will have details posted regarding your event.
So save the date, 19 Jan, and Promote Global Hair Loss!

- Posted using BlogPress from my iPad

Back In The Saddle

It was in September of 2008 when I went in for my annual Doctor visit and was asked to get my blood work done a second time.  After being accused of taking protein supplements (I was trying to get beyond my lackluster version of "fit" for rugby season and I think my doc was jealous) I was sent to a specialist to figure out why my Total Protein was well above normal.  It was at that time that I discovered a new family of acronyms, starting with MGUS (Monoclonal gammopathy of undetermined significance).  After a series of tests, including my first Bone Marrow Biopsy, I was diagnosed with Multiple Myeloma.  Shortly thereafter, the Friends & Family Network kicked in and I was meeting with as may doctors as I could find and settled on Dana Farber in Boston.  However, doing the four month's of chemo there would be a bit challenging and I was given the name of a doctor at St Vincent's here in the city.  In October of 2009 my numbers started to increase and I needed to start the chemo program.  By November of 2009 I was in a near-complete remission and and in January of 2010 I harvested my cells, put them in a freezer and started my maintenance having, for the time, avoided the need for a bone marrow transplant.

I've now been on maintenance chemo for about three years and my numbers have started to rise again.  Granted, they're nowhere near what they were when I was first diagnosed but that's the beauty of watching these things monthly.  In August of this year my numbers were creeping up beyond normal and the doc put me on steroids in addition to the Revlimid.  Thanks to Mr Steroid I'm back to my normal flatulent self; however, it's now time to actually schedule the transplant.

I will post details later but I'm currently scheduled for Jan 28 to go through the process.  It will be three weeks in the hospital and then a few weeks after being cautious and avoiding people with the sniffles!  Now, in addition to planning for the transplant, heading into the holidays, I need to also coordinate telling the kids (they're too old to let the hair loss slide this time!)  So with that, I will need to coordinate a big party to shave my head!  I'm hoping I can coordinate a big "Global Hair Loss" event and will reach out to all corners of the world to encourage support - IF i can get my act together!

That's all for now!

Bill

Lost Connection

Well, I'll start with saying I'm fine - as that's probably what most people are looking to see or hear.  It's bizarre, as I look at my last post being February, how easy it is to forget to update things.  Thanks to a reader who happened on one of my posts I've looked at my blog and realized 1) that I am not keeping in touch and confirming with everyone that I've not fallen off the radar and 2) that I've kept with the goal of my blog (as stated in the header) of this being my place to say what I want when I want (even if that when is separated by numerous months!

I'm monthly at the hospital to check my bloodwork and they've rolled out that really cool MyChart by Epic - which never gets updated and never really gives me anything I need - BUT IT'S GOT GREAT POTENTIAL!  The only other update is my NP, a good friend who made sure I was always taken care of, has left for another hospital and a different doctor - that's a bummer.  I need to see Dr J and I also need to schedule my visit to DFCI.  I'm on cycle 31 of my maintenance revlimid so we'll see what happens next.  Everything seems to be normal except I'm too busy, the summer is almost over and I can't keep up with my kids (they're getting too old way too quick).

Thanks again to everyone reading!

bill

My Annual Doughnut!

(This was written in Wed while at Mt Sinai but for some reason my BlogPress app want allowing me to publish - so this MSG is delayed a few days.)

I've been offline for quite awhile and for that I apologize. I guess when your not in the thick of things, updating the blog doesn't come as easily. Well, thi morning I am back for my annual PetCt to investigate my innards and determine if my bones are all still in the correct place (I never did learn that song, "neck bone connected to the...")

If you remember from a previous posting, the PetCT process involves a nuclear injection (IV). It's very intimidating as the sure wheels in a cart with a giant lead block (to protect her) and a gun-like apparatus in front of the block. They had inserted the IV prior and now they removed the nose of this gun-like piece and hooked the IV to the front of the gun. All of this being done while the nurse was meticulously hiding behind the big lead block. The injection was quick and sounded much like my son finishing off a milk shake.



Now I have to wait and hour for the glowing, radio-active substance to
circulate through my body. But that's ok - I have refreshments! The
(patented) Radi Cat2 Berrie Smoothie! So no food since midnight, nothing but water this morning (not even coffee) and I have approximately 37 more minutes to wait till I get the call to come in for my scan.
From there, I head back upstairs for my quarterly Zometa treatment. Once that's done, I can go get coffee and food. Now I'm thinking what that menu will include as I'm slowly getting starved!

All is well otherwise - my IGA numbers have remained in normal and I'm hoping to keep it that way for some time. I did increase my Revlimid dosage to 15 mg a few months ago but otherwise all signs are normal.

No other updates for now. Any questions, please holler - otherwise, thanks for reading!

- Posted using BlogPress from my iPad

Location:Mt Sinai, New York

My AT&T Diatribe

First - an update - I'm fine.  Ok, a little more than that - numbers were trending up to the high part of normal but then broke back down again.  I'm 2 years in Near CR and everything else looks kosher but am expecting that at some point my numbers will get above normal and I'll have to address then.  Bottom line, a bone marrow biopsy done in Nov'11 shows less than 5% plasma cell penetration - which is actually normal.  However, when you look deeper, you can tell the cancer cells are there and still active - but I'm keeping it at bay.  And now for my 10 minutes of bitching at AT&T!

I've had an iPhone since day 1 (well, month one, not day one).  I was holding off on upgrading my 3GS until the 5 came out but alas, that wasn't to be and they only came with a 4s.  My wife surprised me w/ the new phone two days for Christmas and I love it (i'm an apple fan!).  I did exchange it for the 64gb but beyond that, aside from getting it authorized, I didn't (and wouldn't) involve AT&T - that would only screw things up.

I go online, I know what I want, I haven't touched my AT&T contract since my 3GS upgrade and I'm spending well north of $150/month for our two contracts.  Then I got  my most recent bill - THE FREE UPGRADE FOR MIGRATING MY ACCOUNT COST ME $18.00.  At this, I emailed AT&T and asked them why - here is their response:

Dear Mr. M,

Thank you for taking the time to e-mail AT&T regarding the upgrade fee.  My name is Kellye Johnson, and I am happy to help you with your inquiry.

Mr. M, the $18 fee is to allow us to assist customers with recommending new equipment, offering special offers and discounts, providing assistance with the upgrade process if needed, and supporting the returns process within 30 days. These specialized processes help us to ensure you are satisfied with your new equipment, and are ready to use it the day you receive it. The upgrade fee allows us to defray some of these additional service costs.

I encourage you to visit our web site (www.att.com/wireless) often to view current and previous monthly statements, make payments and to shop for new product and service offerings.

If you need to contact us again regarding a new issue please send us another email via the contact link through your online account.

Mr. M, we recognize that you have a choice in wireless providers and we thank you for choosing AT&T and being a valued customer for several years. My name is Kellye Johnson, and our goal is to continue to provide you with excellent service. 

Sincerely,

Kellye XXXX
AT&T
Online Customer Care Professional


I DON'T need their recommendations (more would I listen to them); NONE of their special offers affect my purchase of the iPhone (they only offer on droid, berry, etc.); they ONLY flip a switch, and in my case had to flip it ON, OFF, and ON again; the return process was NOT done through AT&T (again, they just flipped as switch, see above).  I DON'T see those costs needing to be "defrayed" and I would switch services but I really like the technical service (NOT, in ANY way, the customer service, from AT&T).


I had to speak my piece and will post a link on Facebook asking for anyone willing to pass it along as my one way to show AT&T that loyal customers use examples like this to seriously think if they've made the correct decision.  This doesn't help a charity and doesn't do anything else of ready import - but if you've had a similar experience, pass this along w/ your note!


Thanks for reading!


Bill

Dana Farber Study on MM Cancer Inhibitor

This is an interesting story - still years from being offered but it seems like extremely great news.  Also reminds me to read these monthly emails I get from DFCI!

Read Story Here

Breast Cancer

Thank you to Sandy for her comment on my last post.  As my post occurred on a holiday (in the States) weekend, I forget that people might not see my blog till later in the week or it might get crushed with all the other updates people get.  So to Sandy's point, a little more color, but first, apologies for the reiteration, but here's the details I posted previously.


(repeat from prior post - new information below)


My cousin was recently diagnosed with breast cancer, has had a tumor removed and is now facing chemotherapy. And is scared shitless!
She's 54, the tumor was about 3cm, upon removal they were able to identify trace amounts of the cancer in the lymph nodes. She's scheduled to get TC in four cycles (I believe). But she's scared of the chemotherapy and not thinking of what could happen if she didn't get the chemo. On a scale of 1-50 she's a score of 23, so about halfway. She has cancelled one appointment and I've not yet heard if she's gotten a second yet. In prep for her first round they had her on dexamethazone and failed to warn her of the effects. She took it at 1630 and was on the phone with me flipping out at 0230. Had she known what to expect she could have been prepped for a "speedy" night but not knowing, her only focus was the chemo and what could go wrong. She ended up canceling her appointment the next day.

Now this blog has been mostly about MM but being scared of chemo knows no borders - just some chemo is more of an annoyance than others. What I'm looking for is examples, feedback or words of wisdom I can pass back to my cousin. Whether it be about chemo, breast cancer or anything else relevant, please post a comment so I can pass them along to her. Any help would be greatly appreciated.


(more details)


Sandy brought up a point that my cousin may be in denial (most definitely) while also being scared of the drugs, their effect, etc.  She can't take tylenol/codeine without feeling like she's on a 70's acid trip.  But again, I think that's being more scared than anything else.  Regarding Sandy's comment about getting online and taking control - well that's a bit of a problem as, until 2 weeks ago, she didn't have an email address.  She's sent me one email (the night the Dex hit her!) and she's not yet responded - most likely due to the fact she doesn't know how!  She does have a son and daughter that can assist with email but I need to call her to get her more info.  Regarding family, her sister is a nurse (oncology I believe) so she has resources but she follows the clan with her stubbornness!  At some point she'll read this and probably hate me but I'm hoping the information I get from my blog readers is such that she'll thank me in the long run!


If you have any feedback (Sandy, thanks for the start) I'd much appreciate it.  Please leave a comment and let me know.  Again, thanks for reading!


Bill

Vacation, Retraction And Assistance Desired

It's the last day of vacation and all my peeps in Belfair are asking for an update or at least some sort of post as it's been so long. I have nothing in particular to say, as I try and navigate this Star Trek keyboard on my new iPad, but do need to cover three things. First is I need some assistance from all my readers.

My cousin was recently diagnosed with breast cancer, has had a tumor removed and is now facing chemotherapy. And is scared shitless!
She's 54, the tumor was about 3cm, upon removal they were able to identify trace amounts of the cancer in the lymph nodes. She's scheduled to get TC in four cycles (I believe). But she's scared of the chemotherapy and not thinking of what could happen if she didn't get the chemo. On a scale of 1-50 she's a score of 23, so about halfway. She has cancelled one appointment and I've not yet heard if she's gotten a second yet. In prep for her first round they had her on dexamethazone and failed to warn her of the effects. She took it at 1630 and was on the phone with me flipping out at 0230. Had she known what to expect she could have been prepped for a "speedy" night but not knowing, her only focus was the chemo and what could go wrong. She ended up canceling her appointment the next day.

Now this blog has been mostly about MM but being scared of chemo knows no borders - just some chemo is more of an annoyance than others. What I'm looking for is examples, feedback or words of wisdom I can pass back to my cousin. Whether it be about chemo, breast cancer or anything else relevant, please post a comment so I can pass them along to her. Any help would be greatly appreciated.

Regarding my retraction, on Mothers Day I wrote a lengthy diatribe about my Aunt and her reaction to mothers day with us. She promptly told me that what I had written was not correct. While her mother (my grandmother) was alive she usually coordinated the mothers day festivities but after her passing she was taken out by her husband and boys. Her remark to my mother was simply saying thanks as she was so welcomed on that special day. I can only add that it was our pleasure. Family is too important for not getting together when possible and keeping in touch always!

Speaking of family, were finishing up a week with my folks and my brothers family as well. It's great to see the kids together and "Story Time" at night with Nana. The kids were in golf camp all week so the parents got "sanity time" to relax, hit the outlets, or workout. And each set of parents got a day off as well - my wife and I got massages and a day together while my brother headed locally for a night in Sanctuary! All in all it was a greet week and ends tonight with a big 4th BBQ at the club. No real fireworks but thats fine. Unfortunately we leave at 0800 tomorrow and are back at work on Wednesday. So we'll need to chalk this up as another great memory and hope our batteries are recharged enough to last till the next vacation!

So for now, thanks for reading and please get back to me (comment) regarding breast cancer, chemo, etc so i can pass this along to my cousin!


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Life Of A Blog Writer and His Family

I started my blog after I found out I was diagnosed with Multiple Myeloma in October of 2008. Having a blog allows you to jot down your thoughts and not have to worry about whether or not you included all the right people in the email.  Having said that, there's a certain responsibility with a blog - to keep it updated.  I'm not a journalist or a writer (though, at times, I have had the odd post that has garnered a compliment) so I don't have to deal with that journalistic integrity crap!  But I know I have readers - some I know, and many I don't.  My original purpose was to put everything down on 'paper' so that i've thought it through but mostly so I don't have to tell my mother the story over and over (unfortunately, that result has yet to be achieved.)

If I was keeping a blog on tech then not knowing when the new iPhone was being released would diminish my respectability as a tech blogger.  If I was writing about world peace (something I know nothing about) then, again, I wouldn't be keeping up with the times and keeping my readers involved or aware of my vast knowledge of the subject, especially these days.  But when you have a blog related to a disease like cancer, not updating your blog raises the first question that nobody wants to ask..., "is he still alive?"  Luckily, I've tried to update my posts with the actual fact - I'm alive, i'm in complete remission (touch wood) and doing well.  But don't say anything for a few months and the same question comes to mind.  Unfortunately, you can't help but ask it.

At first, and even now to an extent, it is difficult to follow a blog of a cancer patient.  You get close, very quickly and if something were to occur, your thoughts turn immediately to yourself. And that's scared the living sht out of me at times.  I feel I'm somewhat over that and, as Dr J told me, it's time to get on with life.  You've gotten control over this miserable mess, do your monthly, keep yourself fit and get on with life.  And now I'm back in the regular work swing, I have my monthly bloodwork and Rev maintenance; my quarterly local checkups; and my bi-annual checkups with DFCI.  Those are just a few hours or days and, unlike when I was taking my frozen sushi or going through chemo or losing my hair - there just aren't as many good stories to tell.  And frankly, there's just not enough time in the day, especially with a 7.5 and 4 year old (and cub scouts, dance recitals, etc.)  So now it's late on a Saturday and while jogging this morning I had this idea that I needed to explain this to everyone (or anyone that's willing to have read this far!)

I am doing fine - and I find myself quite lucky for that fact.  But then I turn to others that are having a tougher go at this, I really count my lucky stars - as well as turn my prayers to them.  For those that have gone down this same path, creating a blog to document this pain in the "bone" (sorry, really bad MM joke), remember to add a note here and there to let everyone know you're still kicking some MM Butt!

Now - a complete switch in topics - Mothers!  If you've not spoken to your mother in a few months stop reading this and call your mother - or at least send her an email!  I'm a bit late with this post, with mother's day a few weeks behind us, but it is something I need to say.  Every family is dysfunctional - that's what the F in family stands for (dysFunctional!)  I grew up with a grandfather that feuded with his brother and, until Facebook, an entire branch of the family tree is missing!  His brother's name is on the moon for Christ's sake (he was proud enough to tell us that but still wouldn't talk to him!)  And for this to fester and grow through the generations is just miserable.  All of us have read stories about families, immigration, where you came from, etc. - that connection to the past helps define the present.  I've been trolling through my parents attic getting pictures from years gone past and trying to understand who all these people are and seeing them in a completely different light.  My only memories of my one grandfather were playing gin rummy while he smoked his Marlboro Reds and stuck his dentures out so I'd miss a trick.  Now I have pictures of him in uniform holding my mother at an age 2 years prior to my daughters current age.  You start to see parts of life that helped create who you are today.

Now I'm focusing on all aspects of the family but I started this diatribe with mother's in particular.  On this most recent Mother's Day I was lucky enough to have my Aunt present as well (and it was my son's first communion weekend as well).  Her first comment was, "I don't want to be in the way for your big day."  My only response was, "huh?"  This is family, and you only get one of those - for good  or for bad.  Having her present allowed my kids to see a different aspect of our family, and where I'm sure they didn't pick up on it now, it will be a memory they will have, and  respect, years later.  I show my son pictures from when I was his age and ask him to smile so he can show his kids similar pictures and have similar memories and thoughts (and not that smirky fake smile!)  So my Aunt was included in our festivities and she was overwhelmed with grandkids galore (not having any of her own.)  To my surprise, I was told later that she had never gone out for Mother's Day dinner.  WTF?!?  Sure, my mother is a pain in the ass (love ya mom!) but it's mothers day - if she's near, you better damn well have breakfast or brunch (or suffer weeks of misery!)  It was something that amazed me; but brought up the fact that too many people seem to get it in their head that how they feel, right now, is more important than the fact that blood is thicker than water - these people are the only family you have, think of the big picture.   It's bad to let distant family grow too separate.  But immediate family is too important.  If you're in town, you better damn well let me know or I will be pissed!  I will make time to see you, as I remember when you changed my diapers!!!

I joined Facebook after I left Asia as it was the only way to keep in touch with an expat audience who had a temporary email address (once they moved, the @netvigator.com address was a bounceback).  I was able to keep in touch with a group of friends near and dear to me.  Now that's spread to put me in touch with family I've never even met!  My father was amazed that I send a Christmas card each year to his cousin.  I've never met her but her father's name is on the moon for Christ's sake!  That's cool!  And we're related!  Better yet, I saw a picture of her grandson, who is 8 and is taking TaeKwonDo, just like my son!  I want him to know this boy and maybe one day trade stories about family and what each remember so they can compare notes and make fun of their parents.

We have a bizarre occurrence in our family that rivals Kevin Bacon's six degrees of separation.  It seems (just like my grandmother used to find) that we somehow know everyone and have some sort of connection.  But when it's a connection through family that makes it even stronger.  In scanning these attic photos I came across one with kids in their Sunday best but the year identified in the photo didn't fit with the people or who I thought they were.  After realizing this, I found out it was actually family I'd never met, but who's son (whom I had met, in Scotland, once) I share a birthday (my cousin).  I then got an email from his father saying he remembered that day (and he was the second from the left in the picture) and that they could only afford the photographer if three families got their pictures done at the same time.   You can't make this stuff up - and it's family.

So enough from me - go call/write/email your mother - NOW!

(I know, I had this same rant about friends so feel free to call them as well!)

bill

The Maintenance Continues - All Is Well!

I can't even remember what month of maintenance Rev I just finished.  Bottom line, all is still good.  I was a month late but went in for my Zometa today.  I'm not sure if it was the Zometa (doubt it) or the 11 hour days at the office and 3 hours more at home that knocked me out for the rest of the day today.  I came home and passed out.  Now I'm hoping that doesn't keep me up all night tonite!

So the good news is everything is looking peachy and I've got nothing bad to report.  The bad news is between work and kids I have no time to update so apologies to those that have been wondering if anything is going on.  Trust that if something WERE to occur, I would be updating immediately (if for nothing more than to get my mother off my back!)  And speaking of motherly segue's - here's a question that "a friend of hers" asked (those quotes are the ones you make over your head w/ your fingers to imply sarcasm!): what's the difference between a PetCT, CAT scan and an MRI.  Well Google has done it again.  I will completely plagiarize the source but I will also give a link and full credit in advance.  But I think this is a fairly good lay-person's description of the tools.

(thank you to springboard4health.com and their article linked here.)
January 19, 2000

CT Scan, MRI and PET Scans…What are the differences?
CT, MRI and PET scans are all diagnostic tools to non-invasively (non-surgically) look inside the body. They are all based on the fact that certain things happen to atoms in our bodies when they absorb energy. Resonance refers to the level of absorption achieved by adjusting the frequency of the radiation and the strength of the magnetic field – like tuning a radio to a particular station. 

CT (computerized tomography) uses a sophisticated X ray machine combined with a computer to create a detailed picture of the body’s tissues and structure. Usually a special dye called a contrast material will be injected prior to the scan. This makes it easier to see abnormal tissue due to specific absorption rates. 

Nuclear magnetic resonance is produced by measuring the magnetism of spinning electrons and protons and their interactions with nearby atoms (usually protons) when they absorb energy. This provides information about the chemical structure of organic molecules. The use of the word “nuclear” has recently been avoided and Magnetic Resonance Imaging (MRI) is now preferred. MRI uses a magnetic field from super-cooled magnets and can often distinguish more accurately between healthy and diseased tissue. A contrast agent is usually used. MRI can provide pictures from various angles and construct a three dimensional image. Some patients who have received certain types of surgical clips, metallic fragments, cardiac monitors or pacemakers cannot receive this type of scan. 

Positron Emission Tomography (PET) scans measure emissions from positron-emitting molecules. Because many useful, common elements have positron emitting forms (carbon, nitrogen, and oxygen), valuable functional information can be obtained. This is the main difference between the CT and MRI scans. The PET shows molecular function and activity not structure, and therefore can often differentiate between normal and abnormal (cancerous / tumor) or live versus dead tissue. Like SPECT (single photon emission tomography), PET also can product three dimensional images, and is usually used to compliment rather than replace the information obtained from CT or MRI scans.