Thursday, November 25, 2010

A Turkey Ate My Homework!

Ok - so it's been a long time since I've posted and I apologize.  From a MM standpoint I'm the same: in CR and my numbers are still going well.  I will begin my 10th cycle of maintenance Rev (15mg) soon.  I was supposed to start it last Monday but issues w/ renewing the prescrip w/ CVS, etc. caused me not to get the 'scrip till yesterday.  Now the debate is whether to start today or tomorrow or wait and start on Monday to get back on my regular schedule.  There's a few things to consider:
a) Rev is known to cause constipation - today is 25 November - that could be an issue.
b) If I start on a Thurs I need to have my bloodwork done and scrip renewed by Wed in order to receive the next dose on a Thurs for the next cycle.
c) If I postpone till Monday then my cycle has been 21 on and 14 off.

I'm opting for c) as I believe it gives me the best option to get back in the regular swing of things.

Now the original reason for this post was to simply say (to those in the US) Happy Thanksgiving!!!  For those outside of the States - Happy...Day!  Hope you have some turkey!

Think about what you're thankful for and be happy!  I'm thankful for my kids (who want everything shown on every commercial for Christmas), my wife (who puts up with me in numerous ways), my Mom and Dad (one who wears the rose colored glasses and the other who balances the rose!), my relatives, my friends, the people reading this blog, and of course the docs, nurses and everyone else that's gotten me to a wonderful place in the midst of this mess of a disease.  I've got a lot to be thankful for and am going to do my best to pass those thanks on!

Best wishes to everyone out there fighting this fight!  I hope everyone has the opportunity to be as thankful as I am!  Happy Thanksgiving!  Go eat some turkey!!!

Bill

Tuesday, September 21, 2010

Not Much To Update

Well there's not much to say - and that's actually good.  I'm finishing up Cycle 7 of my maintenance chemo of 15mg rev and I've gotten off everything else.  No more Lyrica, no more Nortriptylene.  I think the Lyrica (the last to go) was actually causing the weight issues I was facing.  Since stopping I've dropped about 7 pounds.  I'm getting up early and doing my best to knock out a few pushups and situps but I can't really say I'm "working out" but I'll take it for now.  Unfortunately, I can't play rugby (our Old Boys are into their 2nd match of the season and I've not been able to get out for one) so my effort to get fit (so I can embarrass myself on the pitch) is even gone!   But I'll get there.

I'm considered to be in a complete remission now.  The maintenance won't go away, but will decrease dosage at the end of the year and continue on as needed (slowly weaning off the teat of Revlimid).  I now see Mt Sinai every month (for bloodwork) but the doc every three.  I'm at DFCI every six months, just to keep them in the loop on how I'm doing.  I'm taking Zometa for protection, every three months though there has been some debate between the two doctors about how often that should be done.

So now life is getting back to normal and I consider myself lucky.  My son (7) has started his soccer (football) season and I was elected coach - rather, school marm.  I send out the emails, try to get everyone there on time, get the kids to kick the ball back and forth to each other until the real coach shows up and puts them into drills!  Now I get the biggest challenge of my life - explaining the concept of good sportsmanship to your seven year old!  Funny that daddy's stories of rugby don't quite cut it ("just because we lost 65-nil we didn't storm off the field upset, rather we went to the pub and got cracking drunk together")  I'm thinking of bringing juice boxes so that we can pass out drinks to the other team after the match but I'm not quite sure it will have the same effect as a nice pint or two.

Beyond that, work is extremely busy and the market here in the City sure is tough.  There are many people I know looking for work.  I consider myself luck to be busy and have a job - too many people I know that don't have either.

Off to Mt Sinai tomorrow to get the blood checked, confirm my numbers and get my Rev renewal.  Hopefully I won't be so long between postings next time.  Cheers...

Friday, September 3, 2010

In the end...

I arrived at 11:05
I am done and departing at 15:49

What a mess!


- Posted using BlogPress from my iPhone

Help me ObiWanKenobi

I just overheard the receptionist, "I have Mr McHugh standing here and I don't have his chart or any orders" "yes. No, no I don't see it. What, he brought it over? Oh wait, here it is. You're absolutely right. I've got it." "MR MCHUGH?"

Now were going on a tour of the treatment areas, nope, no seat there. Not there either. Oh look that seats taken as well. Why don't you wait here NY the scale as I try to find somewhere to out you.

God I miss my boutique!


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Macy's One Day Sale! I hate Macy's

So my first experience with getting treatment at Mt Sinai is like a Macy's One Day Sale (thank you DO for the Macy's analogy).

I have an 1130 appt and I'm there, labs already done, at 1125. At 1235 I said forget this, let's get my Zometa treatment done first since DrJ was behind schedule. I asked if I needed my paperwork to go over to the treatment area and they said, no just give your name.

Of course when I got there three people asked for my piece of paper!!! Then they couldn't find my chart - that's because it was still over at the Dr's area. Rather than wait, I went and got the chart.

Now it's sitting in a file sorter, initially alone, and now pushed behind by 6 other charts.

I hate "Macy's". I miss my boutique!


- Posted using BlogPress from my iPhone

Sunday, August 29, 2010

How Do You Track Your Bloodwork?

I'm not sure how many of you are as anal about tracking your bloodwork as I am but I've at least 4 inches of folder containing the various copies of bloodwork and charted results of the numerous tests that I've taken over the past two years.  Right from the beginning (as I am almost at my two year anniversary of wondering WTF a protein spike is) I've been tracking my bloodwork in an excel spreadsheet.  At first I wasn't sure what all the numbers meant but as I've gone along, I've started to get a base understanding of what each means and how it impacts my condition or what it helps identify.

When my friend came down with acute-AML, I started talking about numbers, results, platelets,  RBC, Hemo/Hemato, etc.  He looked at me in wonder and asked how I knew all this.  I told him that within four weeks he would be speaking a language he had never thought of before.  And I was right!

So for those of you wondering what to do with your reams of paper, I am happy to pass along the spreadsheet I am using to help track my data.  I originally did this in excel and then migrated to excel for Mac (lovin it!)  There is a bit of work required to update the charts but it's usually just cut/paste or extending the time the chart covers.  Bottom line, I can help get you setup but you would need to learn a bit of excel to maintain!

Some screen shots with captions below explaining each:
This is a grab of the entry form.  I've set this up to mimic the report I get from the hospital so that the data entry is simple. I've got a script written to copy the data so I can easily paste into the actual database.

The main database simply pastes the data coming from the entry form into the next row.  The hi/low ranges are maintained and the value changes red for hi and blue for low.  This database is the source for the charts and is an easy record for each value in the event you want to look back historically.

I have a few "base" charts that maintain two representative values, show me hi/low ranges and simply chart how I'm doing.  These need to be updated with each entry to include the new date but other than that, it's simple to maintain.

My main chart calls out to the database to get values on two different data points and then charts them for the time frame, shows percentage change for each value and represents the hi/low range within the chart.




















































































If anyone would like a copy of the file, please post a comment with your email address and I'll get back to you as quickly as possible.  I would need one or two sets of results to setup the database for your needs.  Alternatively, I can just send you a blank spreadsheet and you can run with it on your own.  Just let me know.  When I first started all this I was amazed how little there was available to me.  The IMF website has a program (that's not compatible w/ Mac) but their hi/low ranges were always different and the charting ability was limited.  I don't want to dismiss what they've built but I found it easier to create my own.

As I've just had to update this for my move from StV's to MtS, I thought it would be a good time to put this out there for anyone interested.

I'm happy to help where I can.  Best of luck to all and if anyone has their own example of this, please let me know!

Cheers....

Saturday, August 28, 2010

Ode to St Vincent's

I've spoken to a few people re; the closing of St Vincent's CCC for MM patients and the migration to MtS.  Where everyone is aware that MtS is the better hospital and will be much better, long term, for research, treatment, etc., everyone misses StV's.   As an entry to this miserable disease, and having seen a few other institutions in advance of going to StV's, this was a wonderful place to go through the treatments, check-ups, and what not.  From the moment you arrived, they knew who you were, what you were scheduled to do and where you were supposed to go.  And though I've waited there at times, it was never a truly miserable experience.  I have even shown up on a Sunday to drop of two liter bottles of 'samples' to a couple of nurses in the treatment area not quite knowing what to do with these.

Now on to Mt Sinai - it's HUGE.  The building I'm in covers two square blocks and is affiliated with the other 6 or so blocks of hospitals around it.  I've not yet been for bloodwork where I wasn't 11th in line in the queue.  To get to the MM section (Ruttenberg clinic) you have to walk through the treatment center (hereafter to be referred to as Grand Central).  Now granted, they're new there - so none of the computer stuff is up and running correctly so there's going to be a bit of confusion.  But it's still a bit tough to get your arms around when you were used to something so completely different.

My buddy the nurse put it more precisely, "StV's was a boutique...now you're at Macy's."  Well my mother should like that! :)

by for now

Saturday, August 21, 2010

Back and At It!

Vacation is definitely over.  Now I need a week to recover from my first two weeks back at work.  I'm finishing the last week of my 6th maintenance cycle of Rev.  All is well and having no issues (aside from the fact that I am too lazy to get up and work out!)

A special thanks to all the reader's down South.  It was great to meet so many people that are reading the blog.  Now, based on my Son's recent experience down there for golf camp, how much is she paying you to say that!?!  In all seriousness, it was great to meet and talk with each of you and thanks, as always for reading.

I have bloodwork being pulled next Tuesday and I believe I'm on target to see Dr J the first week of Sept.  I don't expect anything crazy but I will be hoping to get off the Lyrica leaving the only real "drug" being the Rev.

Thanks again to all!

Saturday, July 24, 2010

A Long Overdue Update

It has been weeks since my last post.  All is going well.  I had two back-to-back visits at Dana Farber and Mt Sinai (formerly St Vincent's) and bloodwork only at DFCI.  Bottom line, my numbers are in line and I've been able to back down on some of my meds.  I don't want to repeat myself (and haven't previewed my prior post so am not sure if I am repeating myself but here goes), but I've dropped the Nortriptylene altogether as well as some of the other supplements (alpha lipoic, etc.)  I've reduced the Rev from 25mg to 15mg.

I can start to feel the Nortrip wearing off now.  I've been able to get up and actually do some exercises.  Not as much as I'd like but at least I'm doing them.  I'm still around 206 and want to get back down to 189 if possible.  Additionally, I'm only seeing the doc every three months but still doing bloodwork every month (to get the Rev scrip).  Also, I have a very special friend at the hospital which is a huge advantage.  One of the NP's from StV's used to be in myeloma and moved to solid tumors.  When the change took place she followed Dr J and is back in MM and is helping me out LOADS!

So, as promised, I'm going to try and post some before and after pictures (yes, the hair is all back, it's come back full force, and a bit more curly than I would have wanted.  I'll also try to post a few pics w/ a relatively mild Rev reaction.

So this pic is the "day of".  In the shower, everything started falling out.  Actually, not everything, it really only fell out in two strips off center of the skull.  So I had hair around the ears and on the top (mohawk) but nothing in between.  It was a really bad Bozo look!  After consultation with the wife, I took out the shears and got it down to what you see here.

After a few days, it ALL fell out.  This was not caused by any clipper or razor - this was a "Trim By Cytoxan"!  I took this with my iPhone for posterity.


When I went back on the Rev (the first maintenance cycle) I had a really bad reaction.  This example here is either the second or third cycle.  I have the reaction around the 4th or 5th day of the cycle.  Notice the red patches on the side of the scalp.  If you look closely, you'll see red on the inside of the eye socket, that's the first place it starts.  On my first cycle I was triple this with my eyelids and eye socket swollen along with the skin of my scalp, over the ears, also swollen.  I looked like a really bad Frankenstein!


I'm now back to full growth and, today, actually had to go to the barber as I could no longer handle the trim with my clippers (without it looking like I had handled the trim with my clippers!)

I head to Mt Sinai on Tuesday to have bloodwork and get my numbers.  They're still a bit crazed there with setting things up but at least I'll know where I stand this month.  Thanks to everyone reading this and, as always, any questions, please let me know!

Thursday, July 1, 2010

What's next?

Actually, having typed that, I realized it could quickly be misunderstood as a statement of frustration.  That is certainly not the case here.  By "what's next" I simply mean to provide an update to what seems to be my less frequent postings.  As has been lately the case, I offer apologies to those "avid" followers, again, as there hasn't been a recent update to my blog.  The days just seem to escape like a poorly monitored, greased swine!  (going for visuals tonight!)

Having taken a long weekend in Boston (at a beautiful home with gorgeous views and company that too frequently tip the bottle), I had my visit at DFCI which was promptly followed by a visit at my 'new', New York digs: Mt Sinai (I believe the correct name is the Ruttenberg Cancer Center but I will confirm that in a later post).  Bottom line, my numbers remain where they should be.  IGA is normal, IGG/IGM are low but approaching normal.  WBC, Hemo and Hemato are normal where RBC is just below normal.  TotProtein, Globulin and Calcium levels are all good.  I had no m-spike so DFCI now considers me to be in near CR (complete remission) as well.  Having met w/ Dr Jagannath at Mt Sinai after returning from Boston and DFCI, the following are the changes going forward:

  • we will drop the Revlimid from 25mg down to 15mg, still 21 days on, 7 days off.  I anticipate this being followed through end of this year while dropping to 10mg (21/7) beginning in 2011.
  • we will drop the Dex altogether (yipee!  perhaps this means an end to the c-word?)
  • we will drop the Nortriptylene as well while keeping with the Lyrica at 200mg/day for the time being.  I'm anxious to see where this leaves my feet.
  • we will drop the Accyclovir as that is really utilized in conjunction with the Velcade and unnecessary in my current state.
  • there is still a question with respect to the Zometa - DFCI is recommending once per month where MtS is saying not only is that not recommended but something they would avoid.  Their belief is that this only raises other potential issues due to the compromises it could pose on the bones itself where I have nothing showing any concerns with my bones or lytic lesions that would demonstrate a need for this active a routine.  I've not yet done enough research to say either way so I'll let the two of them chat it out.
  • I've also opted to drop out of the other daily meds that I don't believe are having an impact: alpha lipoic acid, acetyl l-carnitine, etc.

So my daily regimen is essentially Rev for 21 days along with Lyrica (100mg 2x), BabyAspirin, VitC, VitD, VitB12 (500mcgr - highly recommend this one for an energy boost to anyone taking some of these other meds), FlaxseedOil, sennacol (during Rev days) and finally, FishOil (highly recommended from the pill poppers in Boston!)  I now need to get myself to bed at a reasonable time and start getting up and back to my exercises.  I was also chastised for not having exercised, which I hope to correct in the very near future.  But part of that means getting to bed at a reasonable time (did I just say that twice, probably because it's 23:26 and I should have been in bed hours ago!)

I'll write more re; where I stand and also post some before/after hair pix.  I also took some pix of my most recent reaction to the Rev.  It wasn't bad but hopefully someone new to the regimen will have a sense of relief that it's not long lasting and Zyrtec will take care of it!  Thanks to Beth Morgan for sending me pix of how her eyes reacted to the Rev, I'll try to think of this as I move forward.  I'll also put something together re; long term thought process as I've spoken to both docs re; that issue and have some sense of what to expect.  But for now, I need to get to bed!

Thanks for reading and I'll talk w/ everyone soon!

Tuesday, June 15, 2010

To Dex With Love

It's Monday, it's only 8mg of Dex, it's currently 23:58 AND I'M WIDE AWAKE.

More important, my flaxseed oil wasn't as successful as it was last week and I've even taken to a full 16oz glass of prune juice at dinner (and still no success).  But I just realized I haven't even taken my night-time meds and probably need to do that now!  But for those of you awake and bored, I've not much to report beyond my lack of sleep.  Should be a wonder at work tomorrow.  Perhaps I'll get up bright and early and work out (and perhaps I'll win the lottery as well!)

Good night for now!

Friday, June 11, 2010

The Drugs and What to Expect

One of the recurring themes in my posts is getting caught by surprise when something expected doesn't go the way you expected!  Specifically, the drugs you're given and your reactions to them.  I created a page on my site called The Drugs and What to Expect that's outlined my experiences.  I'm hoping that people just getting into this mess find it useful but I'm also looking for feedback for those that have had other effects.  Being I'm using an "off the shelf" blog template I may not be able to do this effectively but at least I can gauge response and determine if I need to do something differently then.

I've not gotten everything in yet but I've tried to capture as much as possible and will continue to fill in when able.  Please provide feedback (and in the case of Beth, pictures!) where possible.    Hopefully this will prove helpful to others as well.  Please also indicate dosages as that may be of relevance (dependent upon age, current bloodwork status, etc.)

I'll leave everyone on a quick tip to combat the C word!  Flaxseed Oil, 10o0mg (or is it mcg)!  It's been the solution!!!  I am also taking "SennaCot" or similar name, which is a mix of Senna and Colace (50mg).  Two of those as night and the Flaxseed Oil during the day and aside from two days this week I've been business as usual! :)

On that note....

Dexa-ticipation!

Last Monday, a week late, I started my next cycle of Rev/Dex.  Sunday, knowing that Monday will bring a fairly sleepless night and the onset of consta...nevermind, I got into bed, just before 10, looking forward to a full night's rest.  At 1240 I put my book down, finally tired enough to go to sleep.  At 1241 my daughter came into our room - I had to bring her back to her room and BAM, I'm wide awake.  0130 I finally was able to get down to sleep.

The bad news?  I didn't start the Dex till the NEXT day!

Other than that, I've not had any real issues.  As this is the first week of the cycle (25mg of Rev) I got the reaction a bit earlier than normal.  On Thursday I had the red head, eyes and ears - and the itch!  Today (Friday) is a bit of the same, a bit less red.

I've successfully scheduled an appt at Mt Sinai (Ruttenberg Cancer Center) but it was a bit tough as everyone was just getting started but then I met Gladys and my life is saved! :)   At first I was a bit worried but then Gladys came onto the scene and set everything up.  I think she realized the mess and wanted to make sure everything was working smoothly (even though most people answering the phone weren't even sure who the doctor was!)

Short one for now - thanks for reading.

Thursday, June 3, 2010

Too Busy To Comment

My last doctor's visit was 28th of May.  In general, all is well.  I've been so busy I've not had the opportunity to call SVCCC and request copies of my bloodwork but my IGA and Lambda levels are good and I still have no M-spike.  The immunofixation still identifies the fact the disease is there but there's nothing else showing it's a problem.   After my prior visit (and in one of my previous posts) I had backed down on my Lyrica dosage just due to the fact that I couldn't remember to take my afternoon med (compliments to the boss man for setting up a recurring email that hits me at 1230 each day with my quote, "...as I can't seem to remember to take my afternoon pill.")  I'm now officially dropped the Lyrica to 200mg and have also dropped the Nortrip to 10mg.  Having done that, I'm noticing a numbness and cold in my feet but thankfully no pain.  I'm not noticing any increase in my ability to get up and workout...but I'm still trying!  I will update a post with actual numbers but suffice it to say things are good and normal.  

The interesting news is the change in hospitals.  For those in The City, you've heard that St Vincent's Hospital has gone bankrupt.  I may have mentioned this before, but in addition to being the primary hospital for Sept 11 victims, it was St Vincent's that took care of all the Titanic victims as well.  A piece of history lost (and a big impact on the neighborhood.)  The good news is St Vincent's Cancer Care Center wasn't directly affected by the bankruptcy (they weren't directly attached to the hospital).  The bad news is, they were affected and SVCCC will now be under Beth Israel.  The further bad news is that BI doesn't have any direct MM related research, doesn't have transplant beds, etc.  So I received three letters.  1) Dr's Jagannath and Chari were both moving to Mount Sinai Hospital.  2) Dr Mazumder (who headed up the Sushi protocol) is moving to NYU and 3) Mt Sinai will be taking over care of my 19million frozen stem cells.  After a very quick consultation with DFCI, I'm heading to Mt Sinai for future work.  Crain's Business News had a quick story on Dr J going to MtS which helped solidify the decision.  Additionally, Dr Chari explained that MtS had a growing research group and was looking forward to building a first class MM group with grants coming in, so this is good news.  The bad news is the commute is longer, sending me back up to the hold 'hood, the UES (bordering more on Spanish Harlem).  

The interesting piece was getting my appointment on 28th May.  The letter stated that after 28th May all appointments would take place at MtS.  I confirmed my appointment on the Tuesday prior only to get a message on my home phone (after numerous times trying to tell them they needed to call my mobile) saying my appointment needed to be Thursday now.  Only problem - I was in San Francisco and wasn't returning till late Thursday (and got the message late Friday eve.)  After a few frantic phone calls and emails, I received a call (this time on my mobile) as I was buckling my seat belt on the plane.  Confirming I COULD come in on Friday.  The visit was fine but you could tell everything was changing.  The good news (more good news) was the people I most liked at SVCCC seemed to be coming to MtS.  Now I have to confirm all my medical records have been released to MtS and will have to make my next appointment.  And since that Friday was everyone's last day, nobody seemed to be present which caused me to not get my Rev script till Wednesday evening, where I was supposed to start on Monday.  So I'll be a week delayed in starting that but again, things are good so i can't complain!

Enough for now.
(and glad to see that Mike's back from the hospital and commenting on his blog!)

Friday, May 28, 2010

Up In The Air

It was a movie available on my flight - didn't watch it (though it's supposed to be great) I stuck w/ Invictus (did you notice my blog name) though the rugby shots weren't great and the documentary, "The 16th Man" was much better; and the Ricky Gervais movie (city of the dead or something like that).  I made it safely on my flights: JFK>LAX Sunday; SNA>SEA Monday; SEA>SFO Tuesday; SFO>JFK Thursday.  I was able to take my Lovenox injections for the flights to/from JFK.  Economy travel still sucks, business class sucks less, but nothing compares to my days on Cathay Pacific!  I hate air travel in the US.  I wasn't bothered by TSA for having a needle in my bag except on my flight from SEA>SFO.  TSA asked if they could look in my bag and then asked, "if I put my hand in your bag is there anything sharp that my cut me"?  To which I answered no but I have a hypodermic needle.  No, it wasn't that, "those things are so light, we can't even see those in the scanner."  Well that made me feel comfy cozy!  I got busted for not having pulled out my toiletry kit as it had a small bottles of shave, soap and shampoo.  The person traveling with me called me a rookie!

Lovenox, now there's some fun!  Remember my prior post in which I stated I didn't know when to take it and there weren't any instructions?  It gets better.  The CVS paper said something to the effect of, "if you're giving the injection to yourself, your health care provide will instruct you on the proper use."  Ok, he said pinch a roll of fat, insert, plunge.  To take this further, there's absolutely NO instructions on literally using the needle.  It comes with a dark grey cover.  Looking at the cover I thought this may be some ingenious way of keeping the sharps safe, you plunge thru the cover and retract the needle into the cover when done.  Push hard on the plunger, nothing happens and I realize that's  not going to work.  Then I realize the cover and the needle fuselage (best word I could come up with) are spring loaded and seem to have some sort of child safety cover.  Press in the sides, push down the grey cap, turn clockwise, or was it counter-clockwise, cut the blue wire...wait...i digress.  I was able to remove the cover, bend the needle at a 20 degree angle and start spurting lovenox onto the sink.  I took the shot, couldn't find the entry point so just slapped on a bandaid.  Upon arrival in LA, I notice the bandaid missed the spot by about 1/2 an inch and I had a nice little bruise.  Same thing occurred on my trip back home (bent needle, etc) but I was a bit better at finding the spot and almost got it covered by the padding, not the sticky part.

Bottom line, my page of Drugs and Their Effects, will clearly outline steps and techniques.  Hopefully I won't have to do this often.  I didn't notice much of a difference.  All is good, heading to the Doc today for tests and re-up on my Rev scrip.  Need to call CVS/Celgene in advance as I'll be pushing this along trying to get a Saturday delivery on my Rev.

By for now!

Saturday, May 22, 2010

Back Into The World Of Air Travel In The USofA!

When I lived in Hong Kong I did quite a bit of traveling for work.  I arrived in late October of 1999 and by January of 2000 I had already reached the second highest level of Cathay's membership.  Travel in Asia, albeit still stuck in a tin can for 4-8 hours depending upon where you're going, was spoiling.  Truly spoiling.  For that reason, I do not really travel for work any longer.  I'm sorry, but travel, in any class, on a US airline in the USA, pales in comparison to travel in economy on DragonAir!  Throw in Cathay or Singapore Air and it's like having a pint of Guinness in a small pub in Ireland for your entire life and then being given a Coors Light (sorry sir, that's all we have and that will be $5 please.)


So tomorrow I head off for 5 days: LA, Seattle, SanFran and back, departing Sunday, returning Thursday.  This wouldn't be of concern but of course I have other issues now - and one of the concerns with Revlimid is clotting.  Now I take a baby aspirin every day to assist with this.  And that was the first recommendation of the doctor.  But since I've got a flight cross country, to be cautious, he's recommended I use Lovenox 40 prior to my long flights.  Now this is a drug that is self-injected - that's correct, you inject yourself, with a needle, right at home (or hotel, or airport bathroom - I feel so....Trainspotting!)  He asked if I had ever self injected before, to which I responded emphatically, "no -- I've given them to my cat, but not myself."  Grab that fatty spot around your belly into a nice pinch, simply stick it in and plunge.  Tomorrow I get to give that a whirl.  I'm soooo looking forward to that!  I've also been instructed to walk around every hour or so on the flight.  What's interesting, is when I got the script, there were no instructions.  And of course, they take the script when filling it, so even his notes (which, in typical fashion, are barely legible) were gone.  


When do I take the drug?  Just before, a few hours before?  I pose the question, asked almost every day (but usually due to a need for some senseless drivel), "what would we do without the internet?"
I would discuss (and probably recommend) a pre-flight heparin shot (such as Fragmin® 2,500 U or Lovenox®40 mg 1-4 hours before the flight) with these patients. However, often these patients are on long-term anticoagulants anyway. I would then not add additional heparin (see "A").
Now there were other sites that actually mentioned the fact that you were given a pre-loaded syringe with really no instructions whatsoever.  No detail as to how to inject, where to inject, when to inject, etc.  So I will include this in my page on 'drugs and their effects" when I get around to actually updating that page!


So, for now, don't expect anything till next weekend unless I get some gob smacker of a story while traveling.  The next fun bit will be next Friday.  I go back to the doctors on Friday and need my clearance check for the next dosage of Rev.  The trick is to get that 'go-ahead' and get my order processed in time to get the drugs on Saturday in time to start on Monday.  All of this shouldn't be an issue - except the fact that Friday, 28 May, is the last day my doctors will actually be at St Vincents.  For those in the city, you're quite aware of the issues that St Vincent's, the hospital, has been facing.  In addition to being the primary location where the injured were taken during Sept 11th, I recently found out that St Vincent's was the hospital where all the injured from The Titanic were also taken.  Talk about a loss of history!  Well SVCCC, not directly affiliated with SVH, was bought out by Beth Israel Hospital (approximately 3 blocks from my house).  So I was thinking it can only get better - but apparently BI has no interest in MM as two of the doctors are moving to Mt Sinai (where I'll be going) and one of them is going to NYU.  I'm not sure if that leaves anyone associated with MM.  I'm covered but it's a shame as SVCCC was a great place - my hat's off to everyone working there!  The good news is I received a letter today notifying me that my stem cells (currently in a really cold refrigerator) will be moved to Mt Sinai as well - so I'm good in that respect. 


Till next week - happy flying!

Tuesday, May 18, 2010

Friends Are Friends

First - I did get up on Monday and did a fairly weak set of pushups and situps.  But the point here is I DID get up!  I guarantee you I will NOT be getting up to do the same tomorrow (or is it today).

Years ago, I played rugby in Hong Kong.  I met the then captain of my team in a bar, in MidLevels with my Gran.  Yes, with my Gran - who was working her one Diet Coke for the evening while I was drinking pints of Guinness due to the fact that a guy I didn't know was leaving back to India tomorrow.  However, Richie, made me an offer (at 130am, while continuing w/ my Guinness while my Gran STILL had her one diet coke - a lesson learned there) to play rugby for Select the next morning at 1130.  I showed up (hungover) and was the only, of a group of about 10 second rows, that played that match.  And we beat Sequins (our inner-club rivalry) for the first time in 12 matches.  There's a story in that but that's for another day.

Bottom line, in that one game, even after irrevocably pissing off the other second rowers that had played w/ the team for years, I was welcomed, quite warmly, into the Select crew.  If you have played rugby, you know what this means.  If you haven't, ring me up and we'll discuss, better, meet at a Pub here in the city and we'll discuss in-depth.  I met my wife through the rugby team in NY and in HK I immediately had a group fo 60 friends/family.  The guys I met that day, to this day, even though I've not seen some of them in years, will remain some of the best friends I've met in my life.  Sweetie (Pete Record) who conveniently carried his beer wrapped around his wrist and balanced against his chest, which led to the inevitalble stain over the right breast on every jersey he owned.  Clive Walton, Esq (who wasn't actually a lawyer, rather, he worked for DHL, but he DID carry himself like an esquire) who could combine any group of people for a night out, including those people who unfortunately were stuck in the Curry House (Shaffi's in Causeway Bay) where 25 of us showed up one Saturday Night.  Clive "introduced" us to every single patron in the restaurant by inviting the entire club to have a beer w/ the patron.  Clive was also known for the ability to consume his own perishables, much to the chagrin of a bunch of Kiwi girls who were 'offended' by his action in the south stands of the HK Rugby Sevens many years ago.  But hell, it was a long way to the pisser....

Include Tom, Dan, Ed (who put his tooth thru the headgear of Jake), Jake (who received the tooth, and then proceeded to play three more matches with breaks while he replaced the butterfly bandage to help stem the bleeding), Stevie (who was Scottish, hooker, can couldnt' be understood from any side of the pitch).  Then there was Charlie, who joined the same day I did, who ALWAY was out on the piss Friday night and ended up vomiting on the sidelines 5 minutes into the game, but then proceeded to just blow away the competition (having relieved the internal pressures!)

All of these mates were sorely loss in the bombing in Bali in 2002.  I, luckily, was in Barbados for my Brother's wedding.  Having said that, when I heard what had happened, I was devastated.  The same person that had called me on Sept 11, 2001 had called me after the bombing to tell me of the loss of so many of my mates.  All of these guys had taken me in (a Yank - how can a Yank know how to play rugby!)  It was a group of gentleman that, for me, has never been matched.  Two weeks prior to Bali we had lost miserably to a local team in HK (yes, Pat, it was Valley Mustangs).  After Bali, having lost a core component of our team, we met the same team and came back to win, devastatingly!  That day, we pulled it together for the boys up in the Sky Bar - to show them The MIghty Select would not be beaten!  And we ended up winning the Grand Finals that year - playing the same team that we had beaten my very first match with Select.  For me, it was my crowning glory!

Over the time, the wounds have healed - what was drastically taken from us in that mess that was Bali, has scabbed over and, though still hurt, live goes on - as the boys would want.  But what brings me to this point is the friends that still exist, over thousands of miles and dollars of phone calls.  Luckily brought together (at least for some of them) through FaceBook.  As an ExPat, keeping in touch with other ExPat friends is always tough due to changing emails, etc.  I joined FBook solely for the purpose of staying in touch w/ these mates.  And that's paid off in the nines.  Tonight, as usual, my friend Deansey showed up, texting me at 1030am, "I'm in from Dubai, you around in the next 24 hours?"  It reminded me of the need to keep in touch w/ these close friends.  He joined me, with my parents, brother, sister-in-law, etc., and we chatted till 0100 but though I see him, at best, once a year, he is someone that I wouldn't miss no matter when he called.  He was the one that got the team back together on a Forced Night Out (no excuses, everyone's going out) after Bali happened.  Beyond Deansey there's Scarthy that calls once a month or so, "...out, just checking in, how are you doing mate?" as well as AliMac, via FBook, moving between India and HK just checking in to see what's happening.

The last time we all met (was really the HK 7's in 2003, the year of SARS when we all referred to it as Single Again and Running Stupid) was in Cambridge when Polly Miller, who was one of the survivors in Bali, had coordinated a rugby tourney in Cambridge to support Dan's Fund For Burns.  That weekend was a sevens tourney in the AM, followed by a 15's match sporting Matt Dawson as well as Justin Leonard (for those Eng-el-land fans), then followed by a black-tie dinner at St John's.  That was then followed by an equally entertaining night out at an after-hours place in Cambridge.   Bottom line, sitting with a mate and regurgitating these stories, much to the chagrin of my wife, reminded me what it means to have friends.

Now I've lived in a large number of places and can safely say I have a number of friends in many locations (whether they'd admit to that or not is yet to be said) but the point of this story (aside from the fact that today is Monday and I had my steroid dosage today and a vast number of beers) is that you can't ever forget that group.  No matter how long since you've last spoken/seen these people, if they were friends, they were FRIENDS.  So to those boys in HK, Eng, Singapore, India, Thailand, Washington DC, Florida, wherever - hello and when can we next get a beer?  And for those of you yet to be friends (people that are going through this same disease as me) when are we next getting together to have a beer (or perhaps a soda or water as I probably should be doing)?   And, before I get in trouble, for those that aren't boys but are the significant others (Arianne!) of some of the boys I played with, let's also get together for a beverage or two.  Friends are friends and life is too short not to remember to reach out and relive - the past is always best when celebrated with others - especially if some of those others can't be there to enjoy it.

Cheers and good night (posting w/o proofing so deal w/ the mistakes!)

Sunday, May 16, 2010

Business as usual

With nothing to report I find it difficult to find topics or stories to post on my blog. I feel like I'm getting back to normal. I also find (or at least I believe) that the nortiptylene is also affecting my general capacities (in other words I'm a perfect target for those old blonde jokes).

I still have issues with my feet and hands but by no means is it like it was previously. I'm wearing my regular shoes and just dealing with a dull soreness and numbing at the end of the day and first thing in the morning. I'm not sure when the docs will let me get off the drugs as I feel like I'm getting to normal. I'd like to try without and am hoping I can do this come June.

But all this is really just business as usual. This week my friend fighting AML came down with a 103f temp or over 2 days. They couldn't find the cause and were going through a series of antibiotics until finally one worked. Apparently he had a strep infection of some sort. Bottom line, it was one of the toughest things he's been through in his life. It's also been a time that he's had to face mortality.

Now everyone knows my blog never really approaches the issue of mortality. Is it because I'm scared? Because I've never had to face that issue? Perhaps. But in my eyes, I could spend time worrying about that or spend time in what I believe to be a more productive fashion. I dont believe it's that I want to face this issue, as I believe I will have to at some point. At that time, I'll deal with it. Till then, I'm only looking forward. And if I can get off the drugs, perhaps I can do so in a more organized fashion than I've been doing lately - and be a bit less blonde-like!

For now, my goal is to get up tomorrow morning, do my pushups, situps and pullups. I want to be able to get a 20 min workout in each morning. From there I want to get out running 2x per week. What finally got me in this mood? First, i'm starting to feel more normal. Second, I'm starting to look fat! ;) But last, and most important, I see what happened to my friend and realize that I can help prevent getting into that position if I get myself into better shape.

So tomorrow it begins.

Wish me luck.


- Posted using BlogPress from my iPhone

Tuesday, May 4, 2010

Round 3

Please do notice the time of this post.  But to truly set the picture, we should discuss the prior week and the 'restful' weekend we had.  Last week was just plain busy.  It was my week off the drugs so my systems were starting to get back to normal but of course, the weekend took its toll!  My son had his purple-belt test in TaeKwonDo on Friday so I left work early to see that.  Afterwards we took him out to dinner and then headed home at a reasonable time.  But of course, by bath, etc., my little one wasn't down till 830 and the older one stayed up to watch an episode of Ben10 and some other Anime style teen show (at the ripe age of 6).  My wife went out with the girls and I went to bed early.  But my youngest decided her big-girl bed just wouldn't work for her and she needed our bed.  Hats off to my wife who, having come in a bit late, actually just got up, and slept with her in her bed.  I was allowed to sleep in on Sat but I still felt like I'd been hit by a truck.  We had a full day on Sat (soccer, swimming, etc.) and the wife and I decided to stay home and watch a movie.  Needless to say, she fell asleep about an hour into the movie, tried to get a second wind, and it just didn't work.  Sunday was a full day of church, burning some energy off the kids at the playground afterwards and then prepping for an hour drive out to Long Island for a nieces' first communion party.  We got home around 7ish, had dinner and then washed the kids and put them to bed.  Again, the little one not till 830 and the elder shortly thereafter.  But it was hot - damned hot!  We put on the aircon in their room and ours but refused, on 2 May, to put it on elsewhere.  The youngest got up around 4 to go to the potty (again, hats off to the wife) and the eldest got up around 5 to say it was too hot in his room (w/ the aircon) and he wanted to sleep on the couch.  He was put back to bed (again, hats of to the spouse) and back to sleep (or so we thought).  Needless to say, it was so hot, we just tossed and turned the entire night.  And this, was our restful weekend.  NB - when I got out of the shower around 630 that morning, my son was sitting on the built-in looking out the window and playing w/ his legos.  He said he'd come out to watch the thunderstorm and had been up since 6:05 (he's telling time now!)


So today is Monday, my first day of round 3.  As noted previously, I've backed down my steroids to only 8mg.  When I started this mess I was on 40mg, now I'm only 8mg (I should be able to handle this, big strapping lad that I am, righ?)  Well, now it's Monday at 23:46 and I've been trying to setup my blog to be able to print to a PDF file that I can print and send to my MIL who doesn't own a computer.  It was midway through downloading the equivalent of 127 pages (boy I talk a lot) that I had these musings and decided to post.  8mg and I'm wide awake, wired for sound, completely refreshed and DREADING GETTING UP TOMORROW!


But enough of that...some key points to note on this cycle.
1) going into this cycle I was prepared.  Having come out of a weekend wherein I truly believe I lost 5 pounds just in the bathroom, I was prepared to go after this cycle full speed.  I took my Metamucil in the morning, had a spinach salad for lunch (w/ beets, asparagus, peas, etc.), and my wife cooked a healthy meal of porkshops w/ fig/rains sauce, broccoli and rice pilaf.  I'm feeling like a champ
2) the Doc offered me a scrip of Senna and I think the quote takes it, "Sennas act as purgatives and are similar to aloe and rhubarb in having as active ingredients anthraquinone derivatives and theirglucosides. The latter are called sennosides or senna glycosidesSenna alexandrina is used in modern medicine as a laxative;[10] acting on the lower bowel, it is especially useful in alleviating constipation. It increases the peristaltic movements of thecolon by irritating the colonic mucosa."  Irritating the colonic mucosa - it doesn't get much better than that.  He also offered me a scrip of Colace commonly known as a stool softener.  The pharmacist at CVS was kind enough to point out to me that the box of Senna that I picked up already had Colace and I only needed that one box to get everything I needed from the Docs scrip (please note - these are over the counter drugs, located next to the Gas-X, and all those other, aptly named, embarrasing to purchase bowel related medications.)  But the better part of this is - if I hadn't asked her and bought both, I would have been taking double the amount of stool softener.  That could have been disastrous!
3) As today is my first dosage of Rev/Dex, I've been paying attention to see what, if anything, may happen (due to the decrease in Dex.)  I have noticed, upon eating my fruit this morning and having an orange later this evening, that I am having a Niacin like reaction - a quick flush and tingling to the skin, specifically to the head (for me.)  Not sure if that's related but will keep on watching.
4) hair is coming back.  I bought another trimmer and tried to just trim my hair (having the setting on 1) and took off more than I expected.  But I have a nice dose of peach fuzz and will continue to let it grow somewhat.  It's really quite nice as I have been able to buy a couple of small Trilby's (had to look that up, under Fedora) at street fairs here in the city and everyone seems to comment (or is just being nice as they know I have cancer!)  Whatever the case may be, I like the hats (as do the kids.)  So perhaps I'll stay short and sport the hat or perhaps I'll grow long and still sport the hat.  One way or the other, after being bald it doesn't really matter!


Enough for now.  I need to depart for sleep (or the 30 min of reading prior to falling asleep!)  Time for a warm glass of milk and to turn the aircon on in our bedroom!  I hope everyone had a restful night!

Sunday, May 2, 2010

Update (boring title means boring post!)

As noted in the title, not much to update here.  I had my meeting on the 27th and numbers are looking good.  Red Cell counts are approaching normal w/ Hemoglobin in the norm.  IGG and IGM aren't quite up to normal (still low) but IGA and lambda remains normal.  I guess the good news is there isn't enough IGA to cause a beta m-spike reading but there are still trace amounts.

In talking to the doctor about status, etc., I told him that I basically dropped down to 200mg of Lyrica (from 300) as I can't seem to remember to take my afternoon pill.  I've not noticed any side effects from this.  My feet still have issues but not anywhere near what they had prior.  Still a numbness, specifically from walking alot.  I've yet to get the motivation to actually go out an run but one weekend, in the near future, I will go and do that and see what happens.  I was given a few more prescriptions (not really scrips but things to buy at the pharmacy to assist with the issues metamucil don't seem to resolve.)  We've opted to cut back on the steroids to 8mg/wk.  I'll see how I fare w/ that dosage in conjunction w/ the Rev.

For now, not much else to report but I wanted to keep everyone in the loop.  It was 80 and muggy yesterday...that's not spring weather!  Have a great week everyone.

Wednesday, April 21, 2010

1 outta 10

So I've been unbelievably busy at work and at home.  The time in VT was great but since my return it seems there hasn't been enough time in the day to get anything done.  I'm in my third week of this cycle and return to SVCCC on 27 April for my checkup.  But I haven't really updated things from my last visit.  Some of this will be stream of consciousness so apologies in advance but its been weeks since I got this info and I just haven't had the opportunity to put "pencil to paper."
My numbers are in line, IGG and IGM are coming back in towards normal (from low) and IGA (the primary culprit) remains normal.  RBC/Hemo/Hemato are all below normal but closely approaching normal so in a good position.  All other indicators are in place and good.  My night at the hospital (after day one of the harvest) had a variety of tests performed, all but one of which came back negative.  The "sputem" test (such a refined word) turned up the H-Flu virus (if I'm remembering this correctly) which is closely related to a bad cold.  Bottom line, the doctor decided it would be best to get a variety of shots to help fight off future infections.  These shots were part of my one big day of many tests.
Now if you remember from my Ohhh Loopy....I'm home post, I had a mini-lyposuction done to test for existence of the disease within the fat cells of my body on that day.  They ran this test due to the late peripheral neuropathy that I was experiencing.  There is a 1 in 10 chance that a MM Patient may have this issue (and I'm sorry, but I'm not sure if that's related to my form of MM, IGA Lambda, or MM in general.)  Guess what, I'm 1 in 10!  Now I'm not sure if I fully understand what this means but I've been told not to be concerned and I'll do my best to explain why here.  Unfortunately, the report, which has two pictures (labeled "Congo Red" and "Polarized Microscopy") has only one line of diagnosis, "adequate fatty fragments focally suggestive of amyloid deposits (focal congo red positive under polarized microscopy)."  But here's my interpretation and it's relation to the bizarre, delayed p/n I've been experiencing.
There are two types of Vitamin C you can buy: regular and time released.  The regular VitC is water soluble: your body uses what is needed and flushes the rest out.  The time released VitC is fat soluble so it stays in your body for a longer length of time as it's dissolved within the fat cells so takes longer to digest (for lack of a better word.)  Where MM is a bone/blood disorder and you expect to see the proteins running rampant within the bloodstream, in my case, the proteins are also present within my fat cells.  So where I may finally get to a point where my blood tests are showing me in a complete CR, the potential exists that the proteins could still be present in my fat cells.   So the Docs are all saying, we want to keep business as usual to make sure we eradicate all presence of the rogue proteins before we consider me in full CR.  
Keeping this same line of thought, if the Velcade got into these same systems, it may be taking longer than normal to get out, thus the delayed effect of the p/n that I've been experiencing.  My feet have been better, but I'm still limited in what shoes I can wear and for what length of time I can be on my feet.  Now my feet are more numb than anything else.  Also, based upon the few acupuncture sessions I had, I can see a definitive link between my feet and my hands - when my feet are hurt/numb, my hands are are hot/numb.  If you remember, at the end of each chemo cycle, approximately 3 days after the last Velcade shot, my hands would get abnormally hot.  I think this was my first sign.
For now, I'm on 20mg of Nortriptylene and supposed to be on 300mg of Lyrica per day.  As I can never remember to take my mid-day pills, I'm only taking 200mg of Lyrica but keeping up with the Nortrip.  Unfortunately, I still can't seem to get myself out of bed and doing my exercises which is driving me nuts!  But I am getting closer.  My goal is to get back into that swing within the next three weeks.  My hair is starting to come back but still not everywhere. I believe I'll have to trim one or two more times before I finally let it just grow but I can see it coming.  Of course, now my wife is saying she likes me bald (I still hate it!)
So bottom line, the Amyloid Deposit, as I've been told, is not something to be worried about, but I am glad that I'm aware (one more thing to check and confirm).  I'm hoping to get more detail on what this means when I'm back on the 27th.  Until then, I've got about a dozen other things I need to get done.
One last thing, which I hope to update further in the near future, I've added a page (linked at the top of my main page) which is the drugs and their effects.  I've tried to start covering each of the drugs I've been taking, their purpose and the effects I've seen.  Each of them have a slew of potential side effects and warnings, which for me, never seem to be applicable (except for hair loss!)  So I wanted to put down in writing what was happening to me and hopefully that will help someone else out down the road.

Bye for now.

Saturday, April 17, 2010

Let Loose The Seuss!


More than a week has gone by and not a word on my blog,
The readers down in blog-ville were running agog.
“What could have happened to that glorious author,
was he stuck without tools, a phone, a catheter?”

Well it seems, grateful readers, that the time that doth past
was spent on quite an adventuresome repast.
Add to that a somewhat substantial workflow
It’s difficult to say where all the time go!

Vaction in Vermont, for six lovely days
It was stress-free but action packed in ways.
Daytime saw poodles and bunnies and swingsets
Hidden treasures, woods and lots of cool insects
Ice cream, teddy bears and other fun toy-sects
Mario, Luigi and “Wii would like to play”-sets.
Where evenings were more focused on the adult time
Nice vino, good dinner and…well a whole lot more wine
We talked, shared stories, forgot the daily grind
We even saw an ‘80s band that knew Simple Minds!

But then later, we would break into my favorite libation
A bubbly amber substance from some foreign nation
And at times like these as everyone knows it
You break out the Wii for a few laughs and how goes its

Alas, all this ends when you must finally return
To face that dreaded ogre that is work and your churn.
The 5 hour drive does not help in the little
Knowing soon you’ll be attached to a desk by the middle.

But you Bloggers must be wondering, “why he doth rhyme
Like some two-bit hawker seeking a dime.”
Well it seems that the only way my daughter would sleep
Is to tell her a rhyming story to help earn my keep.
And in that store, what was found, soon to be my noose?
Just a book, aptly named, “A Hatful of Seuss”

So Sneetches, and Ooblocks and Zax’ do beware
My rhyming, my timing, and whining is clear.
Finally a post, though no update is new
At least it’s different than Horton Hears A Who!

But the blog watchers in Blogville would soon look askance
If I didn’t say something regarding my stance.
Numbers stay good, my feet still circumstance
I don’t believe I’ll soon be attending the dance
But Hellboy remained absent (at least at first glance)
And thanks to “UPS Bill” for keeping meds in presence

That’s it for now, my tongue be doth tied
Arrivederci, Sayonnara, Adios and good byed!

Sunday, April 4, 2010

Only in Vermont!

While at the Ben & Jerry's factory, during the tour, my phone rings (and of course I have the "DIVE, DIVE - NUCLEAR DISASTER" sound for my ringtone.)  I turn off the ringer and don't answer the phone.  After the tour, I listen to the voicemail and it's Bill from UPS saying he tried to deliver and noone was home but was going to give it another try if we could coordinate being there.  I called back and Bill told me he lives up near where we're staying and said he could drop it off on his way home.  My friends coordinated with their neighbors to accept the package (it took three calls to find a neighbor home on a Sat afternoon in VT that was 78 degrees and sunny!)

Bottom line, thanks to UPS Bill, I got my package and all is right in the world.  My only question, would this have happened in the City?  Happy Easter all.

Saturday, April 3, 2010

The wonders of a 21 day cycle!

We are visiting friends for Easter Weekend so apols to all that are anxiously awaiting my next update. I will give all the details later when I have some time but for now, suffice it to say, I'm taking it easy and enjoying the GORGEOUS VT weather!

Well actually right now I'm enjoying the weather on hold with CVS trying to figure out where in the hell my next scrip of Revlimid is. The problem with a 21 day cycle and Rev is the Rev is a controlled scrip and there is no auto renewal. If you can't get an appt till Wed that means they have to call in the scrip that day and then it's overnight delivery on thurs for arrival on Friday. We're on vacation so needed to get that delivery to VT. I got a call late Thursday telling me they didn't get the scrip from svccc in time so it will now be delivered on Sat. Again, this is a controlled substance so someone has to sign for it. But it's guaranteed delivery by 1030.

But its also Sat in VT, Easter weekend. And as I said I'm enjoying the great weather, on the back deck, on hold with CVS in Lenexa, KS for 19 min and 08 seconds now. Can I blame my sunburn on them? I wonder what the guarantee guarantees? Oh well, we'll head to the Ben & Jerrys factory and deal with the Revlimid later!


- Posted using BlogPress from my iPhone

Sunday, March 28, 2010

To Clip or Not To Clip

I was given a time frame to expect the Cytoxan to have it's effects.  Unfortunately, nobody thought to alert me to the fact that other side effects may take longer to rear their ugly head.  I know, you've all heard this complaint before but utilizing my poetic license I'm setting the mood for the primary plot of today's story.  So, after I lost my hair, I asked the doctor how long this would last.  The response, "well if you had done the transplant, it could take as long as three months for the hair to grow back."  So I only had the harvest, and therefore the level of effect should not be as much as a transplant.  Appropriately, I've set my internal clock at sub-three months for my hair to be back to normal.

This begs the question as to when to just let it grow.  I've grown hair in the only place that I can currently do so - my chin (with a little soul patch under the lip as well).  So aside from the fact that I look like I should be a bouncer at a biker bar, it's led to much confusion.  People actually think I shaved my head on purpose (lost a bet, coming out with my more "edgier" self, etc.)  You then tell them you have cancer and we're back to that awkward moment discussion.  Nevertheless, my wife misses my hair.  Hell, I miss my hair (no matter how many people tell me, "you have the head for it.")  So for about two weeks I've been letting it grow in.  If you picture a ChiaPet that's been lovingly cared for by a 3 year old (picture more water going on the table than the ChiaPet) and you've got a good idea of how my hair has grown in.  It's a really bad crop of corn there on my head.  individual hairs getting as long as 4-5cm but spaced out approximately 4-5cm from each other.

So the question comes up, To Clip, Or Not To Clip.  I'd rather the awkward moment, explaining I didn't do this by choice, that I have cancer, and that I'm OK but thank you for asking.  The alternative is someone figuring out I have cancer by the sickly appearance of my cranium and then being afraid to ask as they're not sure how I'm going to react.  So I posed the question to a few friends and we all came up with, "CLIP IT!"  Of course my wife is still in the "half-full" court, saying, "it's starting to grow back."  I apologized profusely, waited for her to go off to church and then speedily broke out the clippers and cleaned up my skull.  So I'm back to biker bouncer and will explain to my wife that it was done in a complete fit of vanity (and that I have Cancer so I can do whatever I want! :)

Thursday, March 25, 2010

Sorry - it's my blog so I can say what I want!

BP, Sunoco, Exxon (Esso for those old enough), Shell - this isn't a diatribe about the oil companies - this is a serious issue that I am dealing with at this time.

Years ago, I caddied growing up.  I will say, my experience at Westwood CC was similar in nature to what everyone has seen (and quoted numerous times) at Bushwood CC (aka Caddyshack).  We had gambling in the clubhouse with penny caddy golf, we had Mrs Gotshalk who came dressed in her night shirt, had a humped back and sneered at you when you ordered that glass bottle of Coke and a Payday bar.  There were HOURS of time watching really bad Sunday TV as you didn't get to the club until 730 that day so were at the bottom of the list of caddies getting out that morning.  Cable TV wasn't invented yet so all we had was Davy and Goliath or really bad Christian TV (wait - I forgot about Candlepins For Cash.)

And then there were the 'Gofers' (I meant to spell it that way Bill Murray!).  On Tuesday's, Ladies Day, you could caddy for an entire foursome, two carts.  Get out the three woods and meet them 20 yards in front of the green.  You had Mr. Michaelson who's entire life was spent trying to scare a caddy to death so that he could bring him home and mount him on the trophy wall.  ANY MOVEMENT, ANY SOUND, was sheer death to the caddy.  You had to hold the bag between both legs, holding the woods together while cupping the irons with both hands.  The towel couldn't flap in the wind, you best not drop a head cover, and if the irons clanked....   And then you had Mr DeLorean, Uncle or cousin to the inventor of the automobile featured in the Back To The Future movies.  He could hit a 300+ yard drive and carried a bag that would put Rodney Dangerfield to shame.  Wait, correction, HAD a bag that put RD to shame, I'm the one that had to CARRY it!

And then there was that fateful day - I can't remember his name but believe it may have been Mr. Michaelson as well (a different one.)  He was on a cart so I had him and his partner while I was running along the side.  At one point he was so upset he told me to hit the shot.  I told him we weren't allowed to hit the shot.  He got angry, but I really was in the right on this one.  So he asked me what club to hit.  He was in the bunker, which made my decision rather simple, but I still nervously replied, "uh...I would use your sand wedge sir."  To which he grunted approval and I ran back to get his club.  Luckily his shot did get out of the sand and we continued on.  I must have done something right as he was kind enough to reach into his golf bag and pull out a plastic baggie with apple slices (that had been there for all 13 holes today) and offered me one.  Since we had just turned the nine I had told him I still had half a Payday bar and was fine.

It was at this point that I noticed something kind of funny.  It kind of smelled, there, near him, when giving him his putter.  And then I noticed it, as he approached his putt and leaned over to pick up his marker - a visible stain - on his pants - I was like 14 years old - I was at a loss!

OH MY GOD!  HE SHIT HIS PANTS!

He putted out and walked off with his friends realizing the cart was on the other side of the green.  He told me to bring the cart around.  I went to get the cart, started to get in when I noticed the seat.

OH MY GOD!  HE LEFT A MARK!  AND I HAVE TO DRIVE THE CART!

To this day, I'll never forget that moment, nor the many others like that, where my elderly golfer friends (who were immediately responsible for my ability to get a new comic book or cool Star Trek thingy) flatulated without knowing.  Walking along, leaving their invisible trail in the air; that unmistakeable sound (to any 7th grader) while going along as if nothing happened.  I swore to myself that I would never let that happen to me.  Sure, if home alone and it happens, so what - but in public, outside, at the office - never.

OH MY GOD!  I HATE THESE STEROIDS - I'VE BECOME MR. MICHAELSON!

That's what BP, Sunoco, Exxon and Shell have in common with me - GAS!  I am sick and tired of spending the first 4 days of every week blown up like a balloon with any movement: stretch, reach, hiccup, whatever; eliciting a noise that any 7th grader would immediately recognize.  Luckily, the 7th graders I work with have all forgotten the joys of their childhood or there would be much hell to pay.  But I know - and I'm embarrassed - but i'll never admit it! :)   So perhaps this is a bit TMI, but again, It's my blog and I'll whine if I want to!

Monday, March 22, 2010

So now I know that...and other, more serious, drivel!

I heard from the neurologist today.  The bloodwork I had drawn on 11 March was finally back and I received a fax with the details.  Judging by the results (and the report's ever so meaningful representation of what they mean, in harsh black and white), I'm guessing he was checking a variety of things in addition to seeing if I may be diabetic and that is causing the neuropathy.  I'm not diabetic.  Pretty much everything was normal except for VitD.  He's suggested I start taking a VitD supplement.

So now I know this, what's next?

"Wait it out and if things haven't changed in about a month, ring me up again."  So I'm guessing acupuncture is my last hope.  The Olbas oil isn't doing anything for my feet though it is quite effective for my sinuses and as everyone in the house BUT me has some sort of cold it must be working somewhat.  Of course, I don't catch colds now, I only get sinus and bronchial infections, it goes straight to the heavy stuff!

But all of this I have to sort of put in place.  Previously, I had discussed the pain measurement, on a scale of 1 to 10.  I had my idea of what that was but I don't think I've really (recently) been at a level 10 or even close.  I think the same goes for where I stand personally, as it pertains to the disease.  First, my selfish side (it's always first, isn't it?) says, "this is miserable - I have cancer, I'm not supposed to get cancer."  You can't rule out your selfish side, you can only apply it to something meaningful.  Not everyone can be like Lance Armstrong and not only beat the disease but "prove it" to everyone (while raising a global awareness of the problem and basically affecting everyone dressing styles.)  But you do have the ability to put the thoughts, anger, selfishness, concern, and even the pain to something productive and meaningful.  For me, currently, it's this blog.  I'm hoping that I can step up and do more in the very near future (which definitely means fundraisers of some nature with my one promise (ok two) of drinks and a good time, ok, three if you include the inevitable stories that will result).  But for now, I need to deal with my issues and deal with my 3 and 6 year olds which, thankfully, occupy the bulk of my time.

This weekend, while unsuccessfully trying to find comfortable shoes that I can wear to work, I happened upon three people coming out of the subway, wearing a bright orange shirt saying "Multiple Myeloma Runner Support Team".  I forgot there was a half marathon that day.  One of the priests at our church was running in support of one of the school mothers who has MM and who, when going through her transplant, required platelet donations (of which my wife was a donor).   That means her numbers were probably not that great, which means just more shyte you have to go through in the overall process.  But back to my runner support team, I didn't do this as my feet were killing me, they caught me off guard (I was passing them on the stairs and I almost missed a step in indecision), and they really had no clue who I was or that I was even looking at them.  BUT, I wanted to stop them, introduce myself, let them know I had MM and thank them for supporting someone!  I wish I had, and I hope next time I do.  But I'm guessing that the person they're supporting wasn't in as good a position as I.

In addition to this, I've already told you of my friend, battling AML, who's in a good position but still going through a chemo I have never had to deal with.  Lastly, another friend shot me a message this weekend, telling me his niece, 17 years old, was diagnosed with stage2 lymphoma.  I'm not going to get into a debate as to when is the best time to find out you have any cancer but I can safely say, in my thoughts, 17 has got to be one of the worst ages, for the patient.   It sucks to be the 'mom' at any age (and I know someone that would agree with me there, correct TaiTai?) but to be the kid, in High School, going through chemo, etc and knowing (or learning) that so much of your life that was still dreams, just can't happen is beyond my capacity to perceive.

It brings me back to the pain scale - where am I on that scale of 1-10 - selfish is pushing 4 and humble is putting down a 2 - so I'll split the middle at 3 with the caveat that I still get to play the C-card when necessary.  On a serious note, everyone tells me they're impressed with my "up-beatedness" (is that a word) and outlook.  I just can't think any other way, and perhaps that's helped me be where I am.  If you have friends and loved ones in a position like this, it's your duty to make sure they stay that way - it truly helps.

Thanks for listening, and again I've stayed up way past my bedtime (thanks Mr Dex!)

Same Ol' Same Ol'

Nothing really to report.  Feet still hurt, more of a frostbite kind of pain (tingling then needles). Beyond that, all is well.  It was a beautiful weekend and I didn't have any bizarre happenings or something stupid to report.  So that's all for now.

Wednesday, March 17, 2010

Get To The "Point" with Acupuncture

I know everyone out there is waiting with baited breath on the outcome of my acupuncture visit.  Especially my friends in Hong Kong, wondering if I've finally been able to balance my Chi. Well, the outcome - as my mother can already tell you, my wiring is all screwed up!

I had two very impressive (I am being serious here) doctors.  One born in Malaysia but from HK parents and the other born and raised in HK.  The new doctor was not aware of my infinitely tiny understanding of the Cantonese language until he asked me a question and I (of course) answered, "Moh Men Thai" (no problems/no worries).  We then compared notes and he took me to the extent of my language abilities (my old address, "midlevels", beer please).  I was then told to relax and stick out my tongue.  I apparently have some 'heart' problems (not literally, but spiritual heart issues).  Of course I couldn't think of what these were so we moved on.  I had needles placed between every finger of my hand and in about 8 other places on my legs.  They were trying to connect my chi from the hands down to the pains I have been having in my feet. They were cautious as they didn't want to over-needle me on my first visit.  I learned a lot about "spleen5" and "kidney9" (eyes closed, relaxing thinking I'm going to get a needle in the belly only to get one in the ankle!)

Unfortunately I didn't really experience anything.  I'm going back next week to try again and we agreed to try approximately five sessions to get something going.  I would really like to see this work but I think you do have to have yourself in the correct mental state for it to work.  Coming from work and having had three cups of coffee that morning I don't believe I really had myself in the correct mental state.  My feet did hurt, so that part was right!  Since I don't have pain in any singular spot it's tough for them to diagnose the best direction to a cure.  Pain in your heel is treated differently than pain in your toes.  The pain I'm experiencing varies in type and strength.  My heel and ball of my feet have a dull burning ache.  My toes will have a tingling, electrical pain.  I will then get a shooting pain on the instep by the heel or a shooting pain starting on the outside of the ankle, above the heel, that runs around the heel and back up the inside.  They ask you to rate the pain on a scale of 1-10 (w/ 10 being unbearable).  I would say on average it's a 4-5 but last night, at our school function, while standing I could say it was at a 6-7.  I don't think I've gotten really beyond a 7 but perhaps my 7 is really a 5.  Who knows!

I tried to find some cool maps of the acupuncture meridians and you really have to know what you're looking for to identify something on the map.  I do have a better understanding of what the docs were talking about when they were reviewing me in advance.  Just google "acupuncture "spleen5"" and go from there.  Good fun!

If anyone has had any experiences with Acupuncture, please comment as I would love to hear about it.