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

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! :)

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!

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.

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.

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?)

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!

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!

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!

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...

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.

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!

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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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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Bald spot

Where everyone else has a bald spot I have a hairy spot. How ironic is that?!?


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Let me describe my feet

As I sit looking out at the wonder of The City after The Snurricane (snowicane, snowmageddon iii), I thought it the perfect opportunity to describe my feet and the pain I'm experiencing. It has nothing to do with the fact that my feet woke me up at 0503 in the morning and I couldn't get back to sleep - honest - it was a burning desire to lay down on paper (electronic paper, well sort of) the experience and adventure that is my foot pain. Now that I've got everyone pepped up for a good read...!

I don't know if this is immediately resultant of the Cytoxan. Refer back to this post for details on Cytoxan. If you look closely at the card, neuropathy is not one of the side effects listed (and thank god I didn't look closely at the card - losing your nails!?!) Now Velcade, the last dose of which was on 12 Jan, is in fact known for causing neuropathy and if it occurs you actually dial back your dosage to help stem the effect. So the Docs are a bit stuffed at this one, there are other causes (related to Myeloma patients) but I've got none of the symptoms associated with those causes - we're testing for them next week anyways. But back to my feet.

There are a variety of pains I experience. First - the dull ache in the heels. If you wear a bad pair of shoes you may have experienced this but I liken it to jumping off a small ledge, 3-4 feet and landing, bare-foot, on your heels. The resulting bruised heel would ache on a regular basis. I can't say that it's constant but, like I'm in near-complete remission, it's in near-complete awareness. Next, there is the ball of the feet, towards the front of the ball of the feet. this is an ache but mixed with a burning sensation although not hot to the touch. Again, this part is in near-complete awareness. Next, I have a variety of sensory effects that can be described but the description wanes in contrast to the physical experience. Everyone tells me, "you have to go on a cruise - until you've done it you just can't understand." I have no desire to take a cruise, perhaps I'm missing something. I have no desire to experience the sh!t that's going on with my feet but I didn't have a choice in that matter and am not recommending you give it a try! :)

To set the stage, as I said, there are a variety of sensory inputs. Where possible, I'll give you the opportunity to associate. Take a 9v battery and, gently mind you, tap the +/- ends to your tongue. That quick zap, very directional, of pain occurs in my toes. I can't say it's near-complete but it is a regularly occurring effect. Next, when you twinge a muscle and experience that sharp, inner pain that starts in a location and then seems to linger down a path, reducing in its power, that occurs in various parts of my feet. This isn't the constant muscle ache of a pulled muscle, this is picking up the kid in the wrong manner and that sharp, swift, twinge is the pain I'm talking about. I will be in a meeting and will physically jerk as something like that occurs, usually around the front of my heel, leading into the instep. This morning, waking up, the pain across my instep was electrical in nature but more of an irregular, pulsing flow that would approach the threshold of truly hurting but never quite cross, causing a dull but annoying pain. I can only liken, and again, not comlpetely, to having a muscle, taught across the instep, that is stretched too far and then released back to normal and then stretched again. It's not quite that as stretching the instep doesn't help. Then there's the irregular occurrences, one of which was this morning where I would move in a manner that is similar to the achilles heel stretch (find a fitness site to explain if this thought isn't familiar to all you slackers! :) and I would experience a sharp, shooting pain from the top (ankle) of the heel up the ankle into the back of the calf. Lastly, there's the overall burning sensation along with a dryness which feels like my feet are cracking. With the Olbas Oil and Cocoa Butter it hasn't been as dry but last night I didn't put on either of these which may be the reason I was up at 0503.

I think I've highlighted the bulk of what's going on in the feet. Beyond that I've also experienced a "mushiness" in the calves, like I'm really out of shape and just went and played touch football in Central Park - wait, that was 15 years ago when I really was out of shape. See how you can tie back these experiences if you really try!?! I'm not sure if the pains in my calves and the additional pains in my knees have been caused by my walking differently due to the issues in my feet. I don't notice the knee pains at all unless I have been walking alot, and usually in dress shoes. Aside from Monday, I've been wearing my aptly described 'man-clogs' every day. Today, with the Snurricane, I'll need to wear my Doc Martens and will hope for the best (they've not been the best thus far.)

For now, I hope you've enjoyed my little masochistic treatise on feet - now I must shower and prepare for work!

Oh...I didn't recognize you...

Before - After

Hair - Bald

For most people, work friends, rugby friends (anyone that hasn't seen pix on Fbook) I can understand the look of surprise if you see me outside of normal circumstances. Most work friends see me at my desk and then ask, "did you lose a bet?" To which I respond, jokingly, "sort of, I guess." and then explain. There are some that come up and talk to you till you actually say something about what's going on. And there are those that outright just ask, "is everything all right?" The latter I probably prefer as it's straight and to the point.

But what caught me the most off guard was the people at SVCCC. When dealing with cancer patients all the time, the change from hair to no-hair I would imagine is quite often. So when someone shows up bald the, "you look different" comment catches me off guard - well of course I look different - you gave me drugs that made my hair fall out! :)

This post was written Monday so the novelty has worn off - well at least for those that haven't asked me to launch my video chat for the entire trading desk to see! All is good except for my feet - my feet are still killing me! I've increased the dosage of the Lyrica and it's not doing anything but making me stoned. Apparently, if this doesn't go away in a few days then I'm to get in touch w/ one of the nurses about a trial of one of their opioid pain medications. Let's break down the word opioid - opiate - opium?!? Sounds like fun!

Dilyn's going to take a picture of me with hair which I'll try and post!

bfn

The glare, the glare!

Today was a day to test the video on my chat. Trading desks everywhere asking me to wave and show off my bald pate! And that fluorescent fixture above my desk offers a wonderful glare on the chrome dome - perfect for entertaining....

Later I went to St Vincent's - and apparently I captured 16.9mm t-cells, about 1mm more than I originally thought! I can't say that's a record but I'm damned impressed with myself. I also found out that the various tests they ran (for bacterium) when I was sick all came back negative except the Sputum - the medical term for loogie! Apparently I had the H-flu bacterium. There is a big name I don't remember and no, it is not related to H1N1, it's essentially the same bacteria that causes a cold. My numbers were good - WBC still a bit low but should be coming up, RBC and similar all the same. Nothing of significance there.

I'll go back next week for another round of bloodwork to determine if I can go on the Rev/Dex regimen. I expect that will start in about two weeks. In addition to that, due to the neuropathy I've been experiencing, and due to the fact that I've had three incidences, in the last six months, where I've required anti biotics, we'll do a few more things while I'm there. I'm scheduled to get a few injections. Currently, I have IGA myeloma. Since the IGA protein has taken over my body, it depleted my abilities to create the IGG protein (antibody) which helps your body protect against infections like the sinus infection and the cough I more recently experienced. Rather than do an IGG transfusion (as my IGG numbers are coming up), and to protect against further issues, these shots will help protect me like a flu virus. In addition to the injections, there will be one or two other tests to help rule out other causes for the neuropathy. The doc definitely doesn't believe this to be otherwise caused (i.e., an issue for a podiatrist) as this is occurring in both feet/legs, not in one. These tests will help rule out any other issues (of which I have no other symptoms.) As usual, I have thrown everyone for a loop as what's occurring with me should have happened with the Velcade, not the Cytoxan.

Regarding hair loss, if I had gone through a transplant (not a harvest) then my expectations for the return of my lovely locks would be about three months. Since I didn't have the level of chemo required in a transplant, I can hope this return will be far quicker. But I'll set the countdown clock at three months!

Regarding the neuropathy - he's telling me I can increase the dosage of Lyrica (I guess it's pronounced Ly-REE-ka) up to a point and see if that helps. So I'll try taking two in the morning, one in the afternoon and one at night. If that doesn't work he said I can start getting a more narcotic solution, such as morphine (yes Janie, I can get a script for Morphine!) I ruled that out saying I'll fight through the pain - I draw the line at medical marijuana.

Lastly, the doc (Chari) is going to turn me over to Dr Jagannath (head of the group) as he (Dr J) has a closer relationship with Dr Richardson (DFCI). This could be prompted by the request of Dr R for a monthly Zometa regimen over two years. Dr Chari thought that somewhat aggressive but understood this is what Dr Richardson was asking for. Bottom line, I'm happy with Dr J driving things here locally.

I think I covered everything - except that I finally found two hats - one winter one, and one more like a runners cap, that I'll probably never wear as it looks more like a dew rag. I never realized how hard it was to find a nice hat! On that note, I hear the Olbas Oil, Cocoa Butter and LyREEca calling!

Just a Quick Post

Nothing much to add - my feet are still killing me and nothing seems to work. I am a fan of Olbas Oil though - sort of like the old 'liniment' that they used to have at football practice. I head to SVCCC tomorrow and hopefully we'll be able to do something about the neuropathy and get this over with - finally! I did get my IGA/Lambda numbers back and they look good - still in the normal range. The doc at DFCI said, "they look superb".

So now I'm heading to the bathroom to cover myself in smelly oils and then on to bed!

ok, so a bit TMI

Hair loss on the head has been discussed. Today I took a shower and shampooed and conditioned my head. Why, you ask? I'm not sure if I can tell you why but it seemed better than soap. Well afterwards, I was putting a little cocoa butter on the head (it's dry here and my head was flaking!) when I noticed my hands were covered with little pieces of hair. What's left is continuing to come out. Not sure if I have the wherewithal to break out the razor.

How does all this work? Well, as I've been told, it takes a bit over two weeks for the hair cells that have been killed to release the hair. And that began on Monday. Now what's funny is I've been able to keep my side burns while the top of my head continues to shed it's little weight of stubby hair. My eyebrows are fine. My chest hair, what little I have, is all there. But Wednesday, when in Boston, I noticed in the shower that my armpits have started to thin. In addition to that, I'm losing hair down below. I expected to be bald on the head, but elsewhere...? I realize all of this is really a bit TMI but hell, it's my blog - I can say what I want!

After Much Delay...Fun With Chemo!

I apologize for the delay but I headed (pardon the pun!) back to work Thursday so I've been a wreck! My son told me Thursday, "are you excited to go back to work and show everyone your bald head?" I want to be six again!

The short story - I'm in either near or complete remission (this is where everyone stands up, raises their beer and says cheers! Please do so now.) From a regular blood test you wouldn't be able to tell that I have Multiple Myeloma. If you do a bit further research, you'd see that there is a trace of the disease but only a trace. So to keep that trace I will most likely go onto a regimen of Revlimid (21 days on, 7 days off) in the near future. And I will maintain that regimen until the numbers start to change. Should there be a change, I'll go back on the original chemo routine (RVD) for four cycles and then back onto the maintenance program. The additional good news is my genetic profile (cytogenetics) is such that the potential exists I may not have to do a transplant. That is really good news (again, raise the beer please!)

The bad news is my feet are killing me! Firstly, the Cytoxan was given to me with a card (you saw the picture in a previous post) warning me of everything that could happen. I was then told that the full effect would occur in approximately 8 days. I was not warned that in a fortnight, the alopecia they warned me about, would then kick in. Once I enquired of other chemo patients they all told me it takes about two weeks. Why couldn't someone have warned me?!? I had thought I was safe from the clippers! But the bald head, which everyone has clearly pointed out, "...looks good on you...", is something with which I can deal. The feet - that's another matter. But again, nobody seemed to clue in on the fact that what's happening with my feet is neuropathy (except my wife!) DFCI definitely believed it to be neuropathy and suggested a few things (detailed below). I can't say they're working well but I did sleep more Thursday night than in the last two weeks!

For now, I am in a good spot. If I can get rid of the neuropathy then I'll feel somewhat normal (chillier upstairs but normal all the same). I am also going to investigate creating another blog page off this one that simply outlines the various drugs I've taken and the reactions from each so that anyone else who has Multiple Myeloma has a simple resource guide! If you're in this for the short ride you can leave now - the rest is details on what the docs at DFCI told me at my visit.

First - the numbers - I've not gotten everything back yet (IGA and FLC) but the basics show everything else is pretty normal. Blood counts were low across the board but just below the normal ranking. Globulin, TotProtein, Calcium were all normal so everything looks good.

Second - the doc is recommending I go on Zometa, monthly, for the next two years. Where the docs at SVCCC were all saying the amount of zometa I was receiving was the same as most people would get in one year, DFCI had a different thought process. As a reminder, zometa is a bisphosphonate (everyone clear now?) and it's used as a bone strengthener that is usually associated with osteoporosis or other bone disorders (normally associated with older people). DFCI is saying it's not the amount of zometa that is stored in the bones (to strengthen and support) but the action of the zometa getting to the bones that is important. This step, the transport of the zometa to the bone, supposedly blocks the myeloma from getting to the bones, according to DFCI.

Third - post harvest strategy, as also mentioned by SVCCC, will be Rev maintenance program (as mentioned above). This will also include some Dex (steroid) but there's a concern if the dex goes beyond six months. If I remain in CR or near CR then we will maintain the Rev maintenance program.

Fourth - if there's an increase in my M-spike (i can't explain that one - bottom line, it identifies a protein spike specific to the iga, igg, igm lines.) or if I step out of CR then DFCI wants a consolidation of RVD for four cycles and then back to rev maintenance. DFCI's studies, for persons with the cytogenetic profile like mine, were all built around two rounds of RVD so this is right in line w/ the protocols they've already tested.

Fifth - for the neuropathy he provided a script for Lyrica. The wonderful thing about Lyrica is it could: make me high, make me sleepy, make me not sleepy (seriously, one page says sleepiness, the other says trouble sleeping), have suicidal thoughts (honest, it says that) and cause, and I quote, "new or worse irritability". So I may be come 'worse' of an irritable arse than I am right now! Additionally, he's recommended two items to assist with the neuropathy: Cocoa Butter and Olbas Oil. The Cocoa butter - real cocoa butter, has the same type of ingredients as real dark chocolate (the 80/90% cocoa chocolate) and the type of ingredients in the cocoa are beneficial to the nerve endings. I would warn, don't wear clogs - the cocoa butter, on your feet, makes for a slippery situation and your shoes will slip off! The Olbas Oil is a swiss made concoction of menthol, eucalyptus and camphor which is also designed to help. It's also a massage oil - perhaps I can convince my wife....wait - sorry, wrong blog! :)

So all is very good for now! I am still bald but at least the Lyrica is letting me sleep (not doing much in the daytime but will let me sleep at night). That's enough for now!

Cold and spiky!

You don't realize how cold it is outside until you've gone hairless! Wow - what a difference. And the same goes for ball caps. When you have a wonderfully done buzz like mine (please add the dripping sarcasm that I can't quite replicate in print) those spiky little leftovers will kill you! The ball cap just helps point out where these are located. I'm going to solicit my wife to try and clean up the missed spots in the back of my head as I really look more like "orange prison jumper" bald rather than clean "Lex Luthor" bald. I am not at the stage where I am ready to break out the razor on my scalp - I just foresee that as being one big, bloody, mess!

My feet are still killing me. Granted, we did spend the day at ChuckECheese in the Bronx and the Museum of Natural History but I don't believe my feet should be hurting as much as they do. My wife was kind enough to loan me her PediEgg to help scrape the inch of callous off the heel and ball of my foot. I rapidly applied lotion and felt like I gave myself quite a nice pedicure (sans any nail work.) I was a bit jealous as my wife had gotten a nice foot massage when she got her feet done. I'll have to go do the same.

We're off to Boston today to meet w/ the Docs at DFCI. This will be the first bloodwork I've received since prior the harvest. During the harvest my numbers all went askew as my blood counts were down (since we were taking it all out) and my WBC counts were high as the Neupogen was making them run rampant! Spending the evening with friends in Boston so it should be a nice trip as well. Back to work on Thursday, with a bald head. Shot a message ahead so that everyone can be forewarned.

Thanks all for your thoughts on FBook, here and via email.

Cheers!

I look like my brother!

Never before have I looked more like my brother. As fate would have it, I slept like sh!t last night and my head felt like straw, to the point of hurting as I lay on the pillow. All I wanted was a nice hot shower and to wash my hair so that it wouldn't be so dry. WELL THAT WASN'T A GOOD IDEA!

So I called in Lil and we had a quick, mid-game huddle, and decided that the story would be I did it for my friend Kieran who lost his hair. I broke out my clippers and did my own marine cut. And I have to say, I think I did a pretty good job. I've uploaded two pics w/ myself and the kids on my kodak site but can't seem to get these to publish and be viewable.

Today I'll also post pics, and my link, on Facebook as I've not done that before - so I guess this is sort of my coming out party for those that aren't already aware. If you're on Fbook you'll be able to see. Until then, I need to sort out how to do this best. Need to go now as the kids are getting crazy!

Need an excuse?

The entire time that I've been going through all this my saving grace has not been the fact that I've not gotten sick or that it's made me miserable. It's been the sheer fact that I can get through all of this without having to explain to my son what's going on. To him it's life as usual.

This recent onslaught of hair loss gives me pause. The sheer (pardon the pause) reason is I don't want him to be worried or even try to understand what's going on. At some point we can talk about what's going on (hopefully at that point it's what went on) but for now I'd rather keep him blind to the entire mess. My daughter is still young enough it won't register but will only be a memory. My son is too old and will catch things if there's not some sensible reason (aka excuse).

So now the question is, "what's the excuse?" I heard from my friend Kieran that the length of time it took for the hair to fall out is not unreasonable as it's the dead hair cells that are finally coming to the top. Though I've not confirmed this with a doctor, K's comment makes sense. I also did a quick test and tried pulling a bit from the hair that's shorter on the side of my head and I was easily able to pull out a lock without difficulty. This tells me I think all of it's going to go (contrary to my previous comments and hopes).

Now I make the decision whether to break out my clippers and pull a Marine cut or head down to Sigfredo's and get Bruno to give me a clip. Or deal with what happens and hope for the best. I'm thinking the clip is the best bet but first I need to determine what I tell Number One Son.

I can say I'm doing it for my friend or just ask him if he wants to cut it really short with me (no way he's doing that!). So tonight I'm just having a few beers and thinking through the various options (in a public manner as posted in this blog.) We'll see what happens. I'm open to suggestions if anyone has sone great ideas! Cheers for now.


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The hair products?

Today was the first day that I pulled a pile of hair out of my scalp. I blame it on Ireland (playing Frahnnz in the Six Nations).

I've no idea what this means. I still have the bulk of my hair and the Cytoxan is days old so not sure if I'll just lose some or all but I guess we'll play it by ear (and how much of my ear becomes visible!)

Keep you fingers crossed and pray to the lord of hair products! Not sure I'm ready for the Mr Clean look! ;)


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"I'm not an aminal...I'm a human be-innng!"

Ok - so I'm almost feeling human again. I did take my full dose of cough med and vicodin before bedtime and felt like I'd slept the whole night. When I looked at the clock it said 0612. WHEN I WOKE FROM THE DREAM AND ACTUALLY PICKED MY HEAD UP TO LOOK AT THE CLOCK IT WAS ONLY 0116. Where do you draw the line on your own body tricking you into believing you slept through the night?!? I did stay in bed (and slept) till just after 6 when number one son came in to wake us up. Though I've been coughing up a mess of stuff and awoke with a head ache, I seem to feel better now.

Yesterday I purchased a B12 supplement and stopped taking my B complex supplement. Today I even skipped the multi-vitamin. So far today my feet feel better but I've not really done any walking (aside from taking my son to school). I finally took a good long shower and was able to change the bandage on my catheter wound. I also had some of my mother's home made chicken soup (very well done mom!).

I can't say I'm fully rested but I feel a 100% better than I have in the last few days. Now I'm trying to clean up all the crap around our computer! Also, I'm working on Excel within the Mac - if anyone reading knows how to create macros or scripts for Excel w/in the Mac, please message me!

Gladys, my feet are killin me!

Last night I slept without any meds. Felt wonderful when I awoke - only to realize it was 1230am and my feet were burning! I'm not sure what the cause of this is but when I last spoke with the docs they mentioned an after-effect and neuropathy. Neuropathy is damage to the nerve endings resulting in 'negative' (loss of feeling) and 'positive' (increase of feeling - aka PAIN) reactions in the body. Velcade is a known cause of Neuropathy but my last does of V was 12 Jan. I also noticed that a toxicity of vitamin B6 could cause this as well as a deficiency of vitamin B12. I happen to take a B-complex 100 (which results in a heavy increase in various B vitamins.) I'm going to stop the bcomplex and get a b12 supplement to see how that works. The doctors have always been ok w/ the B complex as it should help the Neuropathy. I'm also checking with them to see what's happening. The original source of the pain was a pair of shoes and it feels like i'm banging on my heels and the balls of my toes. Couple that with the fact that the house is sooo warm and lack of humidity that my feet feel like they're cracking.

I still feel a bit of the bone pain but unlike the other night, I was able to get back to sleep albeit with some very bizarre dreams. I then woke up at 630 to get the wife in the shower and ready for work only to find out she wasn't working today! Well, the kids still needed to get up so my morning wasn't completely wasted!

Took a nap after the kids went out for the day (and also took some more cough medicine.) So catching up on rest but still a bit under the weather. Hopefully I'll be better in the next day or so. I know I won't have any issues w/ food as my mother has cooked enough for the incoming army she's expecting to our house! Dad's suggesting a TaiTai cookbook (and after last night's dish, I'm in agreement). So look for book sales to begin in the near future!

cheeers.

Fair To Midland

Day three is here and I'm starting to actually feel like myself. The catheter is being removed today, much to my pleasure and delight! Yesterday I was miserable - the evening in the hospital, the day in the pheresis area, approximately 3 hours of sleep and just not being able to get comfortable. And then there was the cough that rattled through my chest and left my throat feeling as if I swallowed razor blades! So now, 4-5 drugs later, I'm starting to feel somewhat normal (fair to Midland).

I was given (from this point forward to be known as) the Aflack antibiotic, then after my harvesting I was given a scrip for zithrocycin (zpack), robitussin w/ codeine and I still had my vicodin. I took the cough medicine when I first got home expecting to get knocked out and sleep for a good three hours. I slept one! By the end of the night I got myself ready for bed, took my two TBP of cough syrup and two vicodin hoping for the best. When I woke I felt better than I'd felt in days. Then I realized t was only 330 in the morning. I took more cough syrup, one more vicodin and went back to sleep - or at least tried. I guess I just don't react to drugs a expected. So I did sleep from about 1000-0330 but nuthin after that.

I've now had the catheter removed and am feeling pretty good. Still am not over the cough/cold but can feel the antibiotics working. You are all lucky as I opted out of taking a picture of the catheter after it was removed. It wa pretty amazing - snipping the stitches hurt more than pulling out the cath.

Enough for now. (not checking for errors!)

Day 1.5 and 2

So they knew I had a cold and were worried if I had a fever. I was feeling like sh!t last night but didn't believe I had a fever. They told me to watch if I started coughing up anything with color and I promised to keep an eye out. So before bed, whilst attempting to gargle w/ Listerine, i choked, put myself in a coughing fit and sure enough - good, colored phlegm! Mm, mm, good! So then I took my temperature (I was watching for 100.5). In right ear, 101.3; in left ear, 101.5; switched to a real thermometer and got 101.1 and 101.3. So I called the hospital.

As a precautionary measure they had me come in and get some antibiotics via IV. I can't remember the name (kept calling it Aflak!) but it was Amiflax or something like that. It was really cool - prestone green in color! They took blood cultures, from both ports and both arms to see if they could identify if there was any infection. This was all done around 12/1230 and I stayed the night at the hospital. Needless to say, I never broker 100 at the hospital but they realized I definitely had issues. The night nurse ran into the pheresis nurse in the subway and told her she recommended a chest xray. Bottom line, fever's gone, chest xray was clear. I'm coughing up some miserable crap and they've given me a scrip for robitussin w/ codeine so I should be able to take some of that and sleep like I haven't slept in days.

Now for the good news! On Monday I was able to get 9 million tcells. My target was 10 million. Today I had already filled about 2/3's of what I had filled on Monday so I figure I'm in the 15 mm range. Catheter comes out tomorrow so between sleep tonight and the catheter being gone tomorrow I may be a happy camper - if i can get rid of this cold!

by for now!

Day 1

I survived. Not sure how much I was able to get but it wasn't difficult. The process that is. Sitting in a bed for 6 hours was miserable. My cold also is NOT going away and has left me beyond miserable.

I'm home now, just need to be cautious that my cold doesn't turn into a fever. Drinking lots of Gatorade and trying to cough out the crap.

Now since I promised - here's the T map with all the "wires" connected. There's a level of comfort that the device is set up with "color by number" tubing. Put the orange striped tubing when heading to Malden and the green strived tubing for bagels in Brookline! (my Boston fans should like that reference).




Till tomorrow...


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Thus far today...

This is what we're after. The clearer stuff at the top are the tcells. I should be done for today soon.

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My own tap

So I'm getting ready for the harvesting. The nurse needed to take some blood for labs prior to starting. I asked, "which arm" and she replied, "neither". I have a direct tap!



Literally - she just plugged in, pulled what she needed and I just laughed.

And here's a pic of the pheresis machine.



Doesn't it look like the T in Boston? I'll post an 'after' shot as well (when all the tubes are hooked up.)
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Super Bowl - Super Sick!

I spent yesterday miserable. The cold I had been fighting last week kicked into full gear Saturday night and left me miserable on Sunday. What's better - the Neupogen started to make itself known as well. Now I understand bone pain! And yes, it's sort of like rugby, afterwards, after the beer has worn off! I didn't want to lay down as I needed to bend at my waist/hips to relieve the dull ache occurring there. I was able to get myself a bit of a nap, waking only once, by my own snoring. I did end up taking a vicadin along w/ another mucinex and started to feel better by the middle of the SB game. It was probably the first beer-free game I've watched since I was in Ohio and the parents let me stay up to watch the Denver game (brother will laugh at that - were the broncos in the SB in the late 70's?)

Today we venture into the harvesting. I start around 830 and have about 6 hours sitting in a bed with my blood running through a cycler. I'll post when it starts (keeping everyone in the play by play) and will have plenty of movies/tv shows on my iphone and my kindle to keep me busy. Wish me luck!

Catheter and Bone Pain

Ok - this one is really only for those that are currently going through or perhaps will be going through the harvesting process in the near future. If there's anyone out there that has gone through this and would like to add their comments, please do.

Bone Pain - the Neupogen increases the creation of the t-cells that you're going to harvest. These t-cells are created in the bone marrow. So imagine if you did 10 push ups a day then you'd feel pretty good and you'd be able to do 10, perhaps 20, without skipping a beat. Now today, and the next five days, you need to do 100 pushups a day. You can imagine the kind of pain you'd feel - and that's what's going on in your biggest bone marrow locations: hips, legs, chest, upper arms. I hadn't felt this till the last day of the neupogen shots and it was like having a crick in your back and you couldn't lay down or sit; and standing up, after awhile, would make you sore.

The harvesting catheter - the catheter used for the harvesting is more a temporary insertion as we'll only need it for a few days. If I was doing a transplant immediately after then they may have put in a medi-port or porta-cath (I can't confirm that, you'd need to confirm w/ your doctor). As seen in the posted pics, this piece is long. The doctor warned me of a potential for pain in my shoulder, behind the catheter. I haven't felt that but I have felt something similar. I can literally feel the catheter in my body. I am crossed as to whether or not I should have viewed the xray pic I put up showing the catheter placement. If I wouldn't have known I may have been better off. Having said that, knowing let me know it wasn't something bizarre happening to me when I laid down at night.

As mentioned previously, the catheter is flexible but not soft. So as you move your body, it's putting pressure internally which can cause some pain. I'm not playing any sports and I've been sick all weekend so I've not been doing anything strenuous. However, what I've noticed, is two things:

1) dull pain - I feel the dull pain in my shoulder, behind the cath and I can sometimes feel it in my chest on the other side.

2) when I lay down at night it takes a good 15-20 minutes for everything to 'settle' and allow me to lay down. It feels like something is out of sorts and you may need to stand up, stretch about at the shoulders and then lay back down. The vicadin didn't seem to help this much but I think everyone reacts differently to those drugs.

Again, the purpose of this post is for anyone that has the disease and is going through this. Sometimes the explanations you get don't full prepare you for what really happens. I hope this helps and if you're going through it as well, please put in a comment with your experiences.

The Whole Story

Let's go through the whole story of what happened yesterday. It was tons of fun and is part of the reason why I hurt so much yesterday. I have to say, one Vicadin into the day, I'm still sore but I don't think I'm as bad off as yesterday (this was posted earlier this morning - took 2 more Vicadin, a Mucinex and saw Eng beat Wales in rugby so I'm all better now! :)

We arrived just prior to 0730 and registration wasn't available yet so they just sent us on to surgery. It was there that I started things off right. As I'm holding the door open for my wife, I let my hand slide down along the emergency release bar and my pinky found its way into the housing of the release bar, proceeding to get stuck and twisting/pinching my pink causing me to scream, "ouch!" and having my wife and the three nurses enjoying their pre-surgery coffee to look at me as if I was "one of those people". "Any blood?" and "do you need anesthesia" were the two laughing comments I received. No blood, no foul - they sent me back to the room to don the hospital fashions: smock, robe, footies and a beautiful blue hair net - 'in fashion you're either in, or your out'! They then showed me the catheter that will be put in (see prior pic) which had me a bit nervous. As I mentioned to my brother today, this isn't like a piece of soft, flexible aquarium tubing - this is a bit stiff (see my reference to not being able to put my arm over my head for confirmation on this point.)

I avoided all thought on the catheter and was met by the nurse, anesthesiologist and, finally, the Doctor. All of them gave me the warnings - nausea, going under, you didn't eat anything, how much do you weigh - but the one that caught me most off guard was the fact that we are putting a pointy piece of plastic into a vein in your chest - and there is the slightest (really slight) chance that we may puncture a lung - , "you're ok w/ that, correct?" "uhhh....sure doc!"

Then it was time - and Lil was brought to the waiting room while I was brought to the OR. I've never been to the OR before. I've only seen the OR on TV or in movies. I've never been to the OR before - and it caught me COMPLETELY OFF GUARD!

My first thought was either Star Trek or Aliens - it was all white, centrally focused on one area, very clean and two big important looking lights over an extremely narrow operating table. I know I paused upon entry - it all got VERY real!!! I sat down on the table, which was heated so I was fine in the gorgeous hospital smock (that of course, opened in the back). There was a towel rolled, and placed lengthwise on the table so that it sat under my spine causing my shoulders to roll down (thus opening them for easier entry). Everything started happening at once - one of the male nurses ("do you need any anestehsia" from before) said, "hi - how's your pinky?" I couldn't recognize anyone due to the mask. I asked them if I could get a mask (and I think I was ignored). The anesthesiologist (i need to find a shorter way of saying that - it's tough to type) then started to put in the IV with a convenient table attachment that my arm can rest on.

Now this guy was all about effieciency - I've been through quite a few IV's in the recent months and can tell the good, the bad and the ugly. He was hideous - it hurt, he then taped it down, pushed on it a few times for good measure and started it flowing. He then went to the other side, wrapped my arm in the blanket over me and then tucked it under the table pad so my arm would stay in place. My shoulders were wider than the table by about two inches on either side, if he didn't do this, my arm would have hung by the side of the table. He then returned to the other side, took my arm w/ the IV and proceeded to wrap that arm, giving a few good nudges to the IV, and tucking it under the pad. At that, he removed the table attachment. While this was going on, the other nurse proceeded to strap me in - big belt around the legs and waist, pulled tight so I didn't roll off. I went from Aliens to Frankenstein in no time flat!

The doc then walked in (couldn't recognize him due to the mask) and asked how I was doing. I told him I wasn't prepped for the OR - had to repeat this as one, I was a had a bit of nervous laughter and two, his hearing aid wasn't working too well (forgot to mention that earlier!) The table then started to tilt up at the feet and I was told to expect a warm sensation in the IV to which I replied, "I don't feel anything warm but I think it's starting to work as I'm feeling kind offfffff.......(out cold)."

They then started moving me around and I was a bit pissed - I mean, why couldn't they get me in the right place so we can just get this done and over with.... Then I realized we were over and done with. They asked me to step down and sit in a chair - at my first step I said, "wow, this stuff is good." They then covered me with two warm blankets and rolled me out to the recovery area. I fell asleep for a bit, then the nurse came and took my BP and Temp. He told me to go back to sleep but by that time I was up and he got my wife for me. He also asked if I'd like anything to drink and brought me a great cup of coffee, graham crackers, peanut butter crackers, etc. The xray tech came in later and took pix and also told me where to get the best bacon, egg and cheese on a roll (which was exactly what my "doctor" had ordered after going through all this crap! I then had the bright idea of posting the xray and he burned me a disk of the shot and my last three bone surveys!

Two nurses came back and started fixing me up, removing the IV, etc. Apparently I was fine. One talked to Lil about the customer service survey they'd like me to complete (WTF?) and the other proceeded to tell me I shouldn't be operating heavy machinery, driving a car, signing any documents (really, I'm not supposed to sign anything - not like I had any big contract signing scheduled that day, but really?) He then told me that for the next 12 hours I should only have oatmeal or something bland like that, "...uh, so no bacon, egg and cheese on a roll?" "Oh no, anything that might repeat on you wouldn't be good as you may get sick". I nodded my head while crossing my fingers - nothing's keeping me from that BEC on a roll! I spent the next hour waiting on my Neupogen injection as the nurse that usually gives them was out and everyone was a bit flustered. We finally finished and left for the BEC!!! I never did get to registration - I wonder who's paying for all this?

Instead of going to the technician's recommendation we found a quaint coffee shop that had great coffee and a BEC on a roll. Only issue here was the roll was a very fresh, very healthy multi-grain nut roll - not the greasy spoon I was hoping for. But that's ok - there was fun to be had here! The place was small, three two-tops by the window and only about 6 other tables in the place. There were three girls taking up most of the right side of the restaurant so we took the middle table by the window. While doing this, a guy walks in, survey's the tables and sits at the one next to ours - I mean really! Worse - he brought in a Starbucks coffee and sandwich from across the street! But wait, there's more - he's an actor and was studying his lines - "Dammit Jim, I'm a doctor", "But Margie, I really DO love you", "This town isn't big enough for the two of us", "Let me introduce you to my leetle friend!" I sat there quietly and ate my BEC and tried to talk to my wife. But in another, alternative universe, I was turning to this guy saying, "go back to Jersey and don't quit your bartending job - you suck!" It was the meds speaking, I think the nurse had earlier mentioned, "don't sit next to any dufuses in a Chelsea coffee shop" in addition to the contract signing.

I decided I didn't want to go home and instead ventured to the Apple Store - this was my first big mistake. I should have gone home and gotten the Vicadin - as you saw from my previous posts, I fell to its sultry suggestions rather quickly as I was sore with a capital ORE! But no, we went to SoHo and found the Apple Store and proceeded to chew this guy's ear for 45 minutes. I finally realized he may be sick of me when I said I've no more questions and thank you. To my surprise he asked if he could ask me a question (much to my wife's dismay and crestfallen face as she was sure we were finally going to be able to leave). He asked my thoughts on the iPad - to which I then needed to talk for another 20 minutes and display my Kindle. We finally left and it was the worst subway ride ever - I was beat.

I got home and immediately sent my wife off to CVS for the vicadin. I laid down, only to find out that really hurt. I spent the rest of the day trying to find a comfortable position sitting on the bed watching primtimetv on demand (catching up on Caprica). She came back at one point and I thought, "finally, the drugs have arrived", only to be told it would be another 20 minutes before she could pick them up. The rest of the day was uneventful - I was able to update posts, pull my xray pix and finally call my mother. The vicadin didn't seem to do anything and now I was really getting that chest cold that had been creeping up on me. My poor brother - he had been fielding all my mother's calls as she didn't want to bother me or potentially wake me up as my one post, early in the morning, said I can't take calls! I give her credit - she listened!

That's all for now - this seemed a bit drawn out - I hope you enjoyed it - it's much better in the telling rather than the writing!

I slept!

I made it through the night without too much trouble. I definitely feel better today than I did yesterday. I woke up about 0230, used the boys room and took two Tylenol for the remainder of the night. The two vicadin I took prior to sleep didn't really do anything.

If you've seen the xray then you should understand this next part. When I put my right arm up over my head we're bending the cath and it puts pressure on the right side of my chest. So I've pretty much laid flat the entire night. I did test laying on my side and was able to do it but not for any length of time.

I got better sleep than I expected and feel pretty good for now.


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You don't believe me?

Ok - proof of how big this thing is!

You'll have to click and enlarge the image but the left hand pointer is pointing at the end of the catheter and the right arrow shows where it comes out of my chest (not my neck as previously, and mistakenly, posted). If you look closely, under the right arrow, you'll actually see the two red/blue pieces that are actually outside of my body. They're very, very faint.

I've got a whole day of stuff to write about but will get to that later.

...I'm waiting

Ok - it's about 25 minutes since I've taken the Vicadin and I still feel like sh&t! I'm fine, just sore as sh&t!!!

More later.


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Wow backwards is OUCH!

So the doc asked, "what kid o pain killers do you have at home?". I'm guessing that the respectable, cancer patient, household has much more powerful painkillers than just Tylenol. The doc said, "I'll give you a scrip for Vicadin." I said sure but I wouldn't need it.

I lied!


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WOW!

I'm out of surgery. More on that later. But look at the freakin' size of the thing they put in me. The whole thing is in there. It's not cut to fit, they use the whole tube!






More later. Enjoying coffee and Graham crackers. I can't take phone calls (mom).

And then the pig says....

Have you ever walked up on the end of a joke and not had any idea of what the joke was about? But of course, you nodded your head and smiled as if you were there the entire time, trying, desperately, to grasp the meaning of the joke and ending with laughter only because everyone else was laughing as well.

Today I have the surgery to insert the catheter in a vein in my neck. This is a simple surgery that will allow the pheresis (sp) to take place at a faster rate (sort of like cable modem vs dial-up!) And beginning Monday, I start the harvesting process. It is true that I had a heavier dose of chemo (Cytoxan) last week and I've started getting the Neupogen injections Wed. But neither of these have really had an impact of any significant level. So for me, I feel pretty much as I have felt. Perhaps my stomach bothers me a bit and I seem to be breaking out on my arms and shoulders like a big-time wrestler on steroids (without, of course, the muscles and tight jumpers!) Bottom line though, I really don't seem to be noticing anything. My disease is in "Near Complete Remission" which means if you look at my blood work you can't see anything. It's not until you look very closely, with a very big wrench, that you can find a small semblance of what was the disease. This is a good thing!

Perhaps I've entered the conversation a bit late - because the number of emails, comments at work, and, of course, the calls from Mom have me wondering if perhaps I really look like the defecation of a large canine! Three people at work wishing me luck and hoping everything goes well. One that's going to send me positive thoughts. Various emails all with this note of concern. FIRST, LET ME BE CLEAR - IT'S ALL VERY MUCH APPRECIATED!!! Second, let me be doubly clear - I'm fine! I'm going to be fine! I'm going to get a giant pint of Guinness when this is all through (perhaps more than one!)

Yes, I have cancer, and yes, I've beat it into 'Near Complete Remission'. I will harvest the t-cells and then continue on as if nothing has happened. I may still be on steroids and may have some very interesting stories about the in/out process of harvesting, but I don't expect to be in a position where anyone should worry. And I most definitely do NOT believe I look like an example of canine defecation.

So, should you start offering me concerns and wishes, don't be surprised if I respond as if you've just entered two thirds of the way through the joke with, "....and then the pig says, what do you think I am - a piece of meat?!?" and then start laughing hysterically.

Just chalk it up to me being a nutter as always! Have a great day and I'll try to send pix from today's surgery - supposedly they're giving me some type of anesthesia that will put me into a hypnotic state. I'll make sure the wife has my iPhone so we can video tape me clucking like a chicken!