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.

Sunday, March 14, 2010

Customer Service - the long lost art of retaining a customer!

My title has no bearing on Myeloma, but to keep in the theme of my blog, I no longer look "red in the face".  The reaction to the Revlimid seemed to wear off yesterday evening.  I had taken a Zyrtec earlier in the day which has helped and not knocked me out for the day.  This morning I no longer see much visible redness (beyond the pinkness of my bald head anyways.)  I will note that my feet are now hurting more so and I've noticed it the last two evenings.  It's become more difficult to sleep.  I actually feel better standing and walking than I do laying down.  Having said that, at the grocery today I started getting shooting pains in the instep.  Since I saw the neurologist on Wednesday I've not taken the Dilaudid.  Tuesday I have acupuncture and I am keeping my fingers crossed that it will have some effect on what is going on currently.

Now on to my rant!  Netflix may have finally convinced me to jump the Blockbuster ship.  Our Blockbuster store (Stuy Town/1st Ave) has been miserable for years.  Miserable service, selection, etc.  The ONLY saving grace is you have to walk by two grocery stores and our Korean deli.  This means if I convince number one son to go to Blockbuster I can get him to hit the grocery stores on the way home.  I think I have reached the end of my rope with that store and will have to resort to simply threatening my son if he doesn't come with me.  We went in for one movie, Ben10 Alien Swarm.  Now granted, it's a new release so it may be difficult to find.  In addition, I wanted to get number one daughter Beauty and The Beast.   The kids selection has NO Beauty and the Beast, no Snow White, no Little Mermaid, it's like they've boycotted Disney films.  But they did have Apple Dumpling Gang, 6 copies of Alvin and the C's, etc.  On to Ben10 - the had one, count them, one copy in the new release section, and it was out.  We were able to find a Pokemon movie to suit our needs but at checkout I asked about the possibility of the Ben10 moving being available.  Of course, she had no idea what I was talking about.  When she finally identified the movie she said it says one was there, when I told her the cover was there but no disc was present she said they probably shipped it to another store.  The ONE copy of the NEW RELEASE was sent to another store?  This is the epitome of retail customer service at it's worst!  BUT WAIT - THERE'S MORE!  She then proceeds to tell me, "You are aware that kids movies are no longer 99 cents, right?  They're full price now."  My only response was, "That doesn't surprise me."  I think I'm done with Blockbuster, even if it helps get someone off his bottom and away from the DS for 30 minutes.

Next stop Gristede's.  Aside from the fact that you're unable to shop due to the fact that they have parked themselves in front of the shelves loading items so you can't buy anything, this is the closest store for staples (bread, cereal, etc.)  Once you've gotten the goods you need, you have the wonder of experiencing, "The Checkout Lady". I truly believe they get paid extra to take items like bread and put it into a bag so that when you return home you have something more resembling Silly Putty than bread.  Three times I had to ask her to put the bread items into a separate bag.  She was quite upset with me.  Again, service at its best!  All the while my feet are flaring up at me - luckily, this was the last day of my Dex dosage, otherwise that lady could have been "toast" (like the bread reference?)

Saturday, March 13, 2010

Give me a cigar, I look like HellBoy!

For those that have been to the movies in the recent past, HellBoy is a comic gone cinema creation.  He's all red, two stubbed horns on top and all red.  And that's exactly what I look like right now!  Yesterday I woke up with my eyes swollen, red marks in my eye sockets and red patches across the front of my forehead.  Today is a bit better but I am all red, I have a red mark across my shoulders and a red stripe on the base of my spine.  Back to the lotrimin comment from an earlier post, I had to put that on today and will again take the Zyrtec to help stem the itchiness, which isn't too bad today.  However, last night was miserable.  Aside from my 3yr old daughter coming into our room multiple times, my feet and calves were killing me.  Burning sensation, cramping in the calves and feet just hurting from the neuropathy.  I'm able to deal with it.  The redness though is disturbing as it really does make me look evil.  Of course the little tuft of WHITE beard I've grown on the stubb of my chin doesn't help. :)

Though I'm writing about how much crap I'm going through, please remember, it's my opportunity to whinge and moan but I'm dealing with it and I'm in a good spot as far as numbers, etc.  It could be alot worse.  So let me vent and remember to keep the faith and keep the good spirits - remember, St Patty's day is just around the corner!  Perhaps Guinness is a good cure for RevRedness!

I had to put in an image!


Friday, March 12, 2010

The Raccoon Is Back

The Revlimid has started to kick in.  I could feel it yesterday when the skin of my scalp, by the top of my ears, started itching.  I also saw the raccoon eyes start yesterday(bright red spots on the inside of the eye socket).  But this morning - I've not had this before - the insides of my eyes, specifically my eyelids, are swollen and reddish blue.  As if I had been in a fight.  I always had a reaction to the Revlimid within the first 4 days of taking the drug.  See "Son of an Itch" post for the details on my first encounter with this effect.  I've taken a Zyrtec and called in sick (but have to find someone to cover a client meeting).  The effect of the Rev is much more noticeable now that I have no hair.  In addition to the eyes; my ears, and the skin around, is bright red.  I have two red patches that flow down on either side of the front of my scalp (around where the hairline should be located.)  Last, my big red birthmark, usually only subtly pronounced, is now bright red like a neon sign saying, "eat at Joe's".

The only change that's taken place is the addition of some very difficultly named vitamins that the neurologist recommended I take.  I met with the neurologist on Wednesday.  He looked me over and checked my legs with a tuning fork (so much for carrying a tune).  He told me to take Acetyl L Carnitine and Alpha Lipoic Acid along with Vitamin C.  I ran these by the docs in Boston and all was fine as long as I wasn't taking Velcade.  Additionally, he told me to stop taking the Dilaudid as the morphine that drug provides to my body, for pain relief, actually prevents my body from making it's own morphine.  He specifically mentioned that if I was to have acupuncture (currently scheduled for Tuesday, lunch time) it may not work due to the fact that my body wouldn't be releasing the morphine it would usually release with the acupuncture as it's been dulled by the dilaudid I'm taking into my system.  So I stopped taking the Dilaudid as of that day.  And boy were my feet killing me yesterday.

The docs also upped the dosage of the nortriptylene.  I'm now taking 20mg per day (in the evening) and I actually believe that may be helping.  However, it's tough to get up in the morning!  I feel good, but wish I could get this issue with the feet resolved, in addition to the reaction to the Rev.  Hopefully that will be lessened as time goes on.  So now, my daily intake is as follows:

  • Revlimid - 25mg
  • Dexamethazone - 20mg (1x per week)
  • Lyrica - 300mg
  • Nortriptylene - 20mg
  • Accyclovir - 400 mg
  • Acetly L Carnitine - 500mg, 4x per day
  • Alpha Lipoic Acid - 300mg, 2x per day
  • Vit C - 1000mg, 2x per day (revised to 500mg/day by DFCI)
  • Vit b12 - 500mg
  • Vit b6 - 100mg (upping that to 200mg today)
  • multi vitamin - 1
  • baby aspirin - 1
So now for some fun - first, one of my avid readers (who shall remain anonymous) was kind enough to bring to my attention the Wikipedia entry for hiccups (see link).  Now the cure fo hiccups I had written down was not mentioned but he did point out the cure outlined in the second paragraph under the heading "Medical Treatment".  Specifically, this is what you should do before you actually pursue any medical treatment.  Luckily, I was able to cure my hiccups prior to having to resort to these tactics - lucky for my wife, that is!  It was interesting to read about the young girl that had hiccups for five weeks continuously.

This same anonymous reader is the one who sees my video chat at work.  I have strategically positioned the camera so that all you see is the top of my head.  Apparently this person is a bit slow at work as he likes to watch the video of my bald head and has asked if I could potentially put something on the top of my head so that it might better resemble a different part of the anatomy (put your thinking cap on as I'm not describing this in any more detail!).  After trying to find different objects on my desk that might suit this purpose I realized I had a chat open with approximately 12 different people and all of them had the ability to see my misbegotten attempts.  Unfortunately, I will not be able to fulfill his request and have ceased trying to find a way to do so (and embarrassing myself in the meantime!)

Enough for now!

Wednesday, March 10, 2010

There is a cure!

For Hiccups! (sorry, had you going there for a minute, didn't I!)

You'll need two people or a very coordinated mouth.  Apparently the Dex is causing hiccups this time versus the acid reflux last time.  But these hiccups stay with you for quite awhile.  So here's the cure.

You'll need to be drinking water while holding your ears closed (pushing on the nubs over the ear hole so that no air can get in or out).  I said no way and was immediately resolved after trying this, in a cab, heading downtown.  It worked immediately and the person that taught me swore it has never failed.

So there's my two bits!

Monday, March 8, 2010

My Medicine Cabinet Isn't Big Enough

Today started my first maintenance cycle - 21 days on, 7 days off.  So here's my list of meds at this point:
- Revlimid, 25mg
- Dexamethazone, 20mg (one time per week)
- Lyrica, 125mg 1 in morning, 1 in afternoon, 2 at night (300mg total)
- Nortriptylene, (dosage?) 1 in evening
- Dilaudid, 2mg per tablet, as needed (approximately 6-8mg/day)
- Accyclovir (dosage?) 1 per day (to stop shingles, believe it's needed in conjunction w/ the rev and dex)

over the counter stuff
- one baby aspirin
- one multi vitamin
- one 100mg VitB6
- one 500mg VitB12

Since I didn't start the Rev till tonight, I can't take the next one till tomorrow afternoon, then I can get on a morning schedule (which is easier to remember).  The dex I won't take till tomorrow as I wouldn't get any sleep if I took it tonight.

The dilaudid is helping but I've limited the amounts being taken as it becomes tough to function.  This leaves me with my feet hurting, just not as much.  I see the neurologist on Wednesday.  Not sure if I'll get anything out of that visit but I hope something will come up.  Till now, I just make sure I have my pill container clearly outlined.  Sometime soon I may actually try to get up and workout - a novel undertaking!  Till next time...

Sunday, March 7, 2010

It's all about the dosage

I did my best to work out the dosages this weekend.  I think I'm best suited to take 2mg in the morning and then save the next 2mg tab till later and slowly work the dosage over the day.  It doesn't remove the pain but does curb it to be more bearable while not putting me into space (literally).  Today I took 2 tabs (4mg) in the morning and I haven't had anything else since.  I spent a bit of time outside with the kids in running shoes and my feet don't feel too bad.  I do believe I will make tonight an early one due to the fact that my experiment last night had a bit too good of a result - in fact I was "resulting"' all morning (just hungover, not sick)!

I took three tablets yesterday: morning, afternoon, early evening.  I also went to the Russian Bath House yesterday evening.  I will tell you, after about an hour and a half in the Russian and Turkish Saunas; and the aromatherapy steam room; and the ice cold pool, my legs and feet felt great.  The massage from the rather large lady in the hard to find room left me melting into the massage table.  When she hit my feet and calves I thought I was going to cry - but boy I felt great afterwards.  From there we headed downtown for dinner and beers.  A big rib eye and roasted veg coupled with a number of beers.  Guinness, without doubt, but they also had Chimay Cinq on tap - that was a first for me!  After about 5 beers (and a 14oz steak) I felt pretty good and didn't feel any reaction with the pain killers.  We then hit two other places until I realized it was 2am.  I wasn't so much concerned with the alcohol or drug interaction as the two kids that would be up at 0630!  I made a hasty exit and headed home.  I realized later this afternoon, after a late night flashback, that I had made a peanut butter and jelly sandwich when I got home - it was all very fuzzy.  This morning hurt - but the experiment worked - I was able to have a few beers without becoming a blithering idiot!  But hangovers are miserable.  That's all for now - more later.

Saturday, March 6, 2010

Getting to Know Yin and Yang

Someone was responding to my comment about balancing work and drugs, "if you figure that out, let me know."  Well - I've not quite figured that out.  Yesterday I took two pills when I woke up but I went straight to a client's office.  After being there for a bit my feet were flaring up so I figured I would take one more as the first two weren't really working.  Needless to say, by the time I got back to the office I had realized I was truly quite worthless.  In a conversation I could hold my own as I was able to focus on one topic.  But at my desk, responding to emails, answering questions, and just listening to the general hullaballoo in the office I was a mess.  I just couldn't keep my thoughts in one place and kept losing track like I was Gilbert Grape!  There was an astonishing brilliance surrounded by a blithering idiot!

I think the perfect analogy was a joke sent by a friend.  The CEO of a company was standing in front of the shredder holding a piece of paper.  He obviously couldn't figure out how to get the machine to work.  Some low life peon in the company structure came along and offered to help.  The CEO just said he couldn't figure out that darn machine.  The Peon proceeded to feed the paper in the shredder.  As the boss was walking away, he looked over his shoulder and said, "I just need two copies, thank you!"

That was me - time to get back on the scooter and work on my balance!

Wednesday, March 3, 2010

Ohhh Loopy....I'm home

So my feet have been killing me and today I was at SVCCC to run more bloodwork and have a few tests done. It was an exciting day. I drew 14 tubes of blood - I had to wait as they had to warm up some of the tubes (apparently some tests require warm tubes!) Additionally, I had a mini-Lyposuction done today for one of the tests. This test has a great visual but I forgot to take a picture. There's a needle (of course) and this massive aluminum handle gadget, imagine the extension gripper thingy you see on late night informercials (to get that cup from the top of your kitchen cabinet - they never explained how you were able to place it there initially but hey, it works!). The doc goes to a nice fatty area of your body (which, due to my recent bout of inactivity, I was easily able to provide), sticks in the needle and then pokes around in a variety of directions while using the gripper to slowly suck out the fat cells. "You may feel a bit of pain, if it gets bad let me know as we may be hitting a nerve rather than getting into the fatty tissue." Me: "Ok, I feel that now, yes, it's starting to hurt now, yes, that part is painful". Him: "I'm going to count to 10 and then we'll be done, one............two........" and this goes on for the slowest 10 count I've ever experienced. So what happened to we may be on a nerve? He had to do this twice. It wasn't really that painful and he was done in about 10 minutes. This test is to rule out another related issue (related to Myeloma) that could be potentially causing the neuropathy.

There were a rash of other tests performed today as well, checking B vitamin levels, as well as testing for other potentially harmful bacteria or viruses in my system (hepatitis, etc.) I was also given two injections/vaccinations to help prevent against potential issues. As mentioned previously, due to my low IGG count, I am susceptible to infections (sinus infection, etc.) These vaccinations will help prevent any issues. So let's think about my day thus far: blood drawn (one needle), liposuction (two needles) and vaccination one and two (two needles, into muscle area of either shoulder). I'm having a blast thus far just trying to find all the band aids I need to remove.

I next met w/ the pain management nurse to discuss my feet. We discussed a variety of options and she got me over the scare of opiate based drugs. To start, the expectation is the neuropathy should be over with in about a month and a half. We decided on two things to assist. First, there is the Nortriptyline (see link for details) that is supposed to work with the Lyrica to assist in rebuilding or fixing the nerve endings that are being affected. Take one of these at night time (as it will make you sleepy). Next is the Dilaudid (again, see link) which is an opiate derivative. This, like morphine, is the pain killer. To make sure it worked, she gave me two, very small tablets, 2mg each. We had to wait for 45 minutes to confirm if it was working. At the end of that time, my feet were still shooting their fireworks with really no change (except for a slight fuzzy/tunnel vision feeling around my face). When the 4mg wasn't working, she gave me two more, saying, "well, you are a big guy." After the prescribed period I could definitely start to feel an improvement in the feet. There was a markedly increased amount of fuzzy and tunnel vision as well. It isn't quite like being drunk, but there's definitely a buzz and I'm walking around in a displaced, absent minded manner (please feel free to insert the sarcastic comment I know you are thinking of at this time.) Everyone should be pleased that I did speak w/ the nurses in charge and did get clearance to have beer while on the medications. I was told I may get loopy rather quick but go slowly and gauge myself. I'm all set for that scientific experiment!

I will say, this process started around 11am with the second dose shortly after Noon and my feet still feel free and clear (as of 1740). This isn't the end as I'm still going to see a neurologist next week so they can look at my feet and I'm also scheduling an acupuncture session to see if that helps (SVCCC has an acupuncturist on staff).

For me, this is very good news. I was also cleared to start up the Revlimid maintenance. That will all start in the next week or so. Numbers-wise, my WBC and RBC counts are still a bit low but very close to normal and everything else is looking fine. So potentially I may not have much news in the immediate future - so I'll try to find something funny to talk about!

Cheers...

Multitasking can be dangerous

Work is too busy - juggling projects, phone calls and people coming up to the desk. My lips got dry and I opened my drawer and reached for the Carmex (lip product, like chapstick for dry, chapped lips) while speaking with someone. I grabbed too much on the tip of my finger but managed to apply appropriately and not look like some eHarmony wannabe with the poutie lips and fake.... (sorry, I'm at svccc and testing out some new pain meds so I take no responsibility for my references and analogies.)

While continuing to talk with my colleague I commented on the fact the Carmex was a bit hot and I hadn't felt that before. Only after I had left that discussion to then carry on another and finally returning to my desk that I discovered I HADNT USED THE CARMEX, I HAD USED THE TIGER BALM!


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Monday, March 1, 2010

A rough night

On Sat I went to SVCCC for my Zometa. While there I spoke with my Newfie nurse about all the issues I've been having with my feet. Due to the nature and variety of my pains she thought perhaps it might be some other issue (podiatry related). I shot a message to the SVCCC docs and mentioned this along with the fact that my Lyrica prescription would run out Sat night.

DO NOT LET YOUR LYRICA SCRIPT RUN OUT!

I think I understand the nature of lyrica - it gets in and works slow enough (over time) that you don't realize the benefits you're getting till they wear off! The doc called me on Sunday and said he would call CVS to refill my scrip. Unfortunately he left them a vmail and Lyrica is a controlled substance and cannot be given without a written scrip. The pharmacist was nice and gave me enough to last through today.

I went to bed at 2030 last night and woke up at 2200 with my feet shooing fireworks! Serious pain. I finally got back asleep around 0200.

The lesson here is don't underestimate the power of the drugs you're given. They may be working better than you think. I go in to SVCCC on Wed for bloodwork and tests. I may also see a neurologist re the neuropathy to test my feet and see what's going on. For now, I plug away at work!


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