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.