Dec252013

Introducing the Side Effect of the Week! :-)

Real estate news coverage is suspended from December 21 through December 31.

The treatments for cancer are not pleasant. The side effects are a smörgåsbord of torment. To help cope with his pain, Tony ran a contest to guess how many times he threw up. Who does that? Tony turned his suffering into a funny game that calmed the fears of family and friends. What a remarkable man.

Warning: some of the pictures in this post are disturbing.

Introducing the Side Effect of the Week! smile

By Tony Bliss

Today I’m starting something new on Let the CLL Games Begin – I’m going to feature an interesting side effect from all my chemo/transplant treatments each week! They may be side effects I’m currently experiencing, or a side effect from my past; some will be physical, some will be psychological, and maybe some won’t make sense to someone who hasn’t experienced it, I don’t know. I haven’t thought this through very well, so we’ll see how long I can keep it going on!

Also – important point here – these will probably tend to be my most graphic posts. After all, it is cancer we’re talking about here! I will try to inject my typical perspective into these posts, but some of these side effects may not lend themselves to the sort of quality prose (ahem) you’ve come to expect from me. That does NOT mean you should feel compelled to feel sorry for me, or post comments about “poor Tony”, or heaven forbid, interpret it as me whining. I just really want this blog to be an honest look at the ups, and yes, the downs, of this journey to recovery. But I have NOT forgotten recovery is the end goal, loyal readers, so please don’t you forget it either!

This is a no-whine zone!

Ok, that out of the way, let’s debut our first Side Effect of the Week, which from now on I will lazily refer to as SEW!

Platelets? Platelets?!? We don’t need no stinkin’ platelets!!!! Oh – you said platelets, yes I need those desperately…

Ok, I hardly know where to begin here. I wanted to title this “And you thought cancer sucked!’, but that didn’t seem appropriate because, well, cancer DOES suck, regardless of what else sucks too.

You must be wondering by now what could possibly have happened, so without further ado, here we go!

Last week I posted about what an unpleasant week I was having, and about the bad news I received regarding further delays until I can undergo a bone marrow transplant. I received that news Tuesday night, and I figured that would be the negative moment of my week. Unfortunately I did NOT have access at the time to the following excellent diagram and formula that would have warned me that I would not, in fact, reach my maximum negative moment of the week until the following day, Wednesday:

MAX NEGATIVE MOMENT
MO’ = 13(1) = 13kN.m
MO’ = 13 – 25 = -12kN.m
MO = -12 + 13(1) = 1kN.m
x = 13/10 = 1.3
MF = 1 + ½ (13)(1.3)
MF = 9.45kN.m
MC = 9.45 ½ (17)(1.7)
MC = -5.0kN.m
ME = -5 + ½ (10)(1) = 0
Max. negative moment = -12kN.m
I.E. WEDNESDAY

Many of you know that I have a long history of nose bleeds. In fact, my nose bleeds pre-date my leukemia diagnosis, and further, it was during a doctor’s visit to discuss my chronic nose bleeds that I was originally diagnosed with leukemia. So there’s a long history there, which I guess makes it only fitting that last week the nose bleeds overshadowed the leukemia.

At 2:30 Wednesday morning my left nostril started to bleed. This was startling only because literally 99% of the time it’s my right nostril that bleeds. Of course, 5 minutes later my right  nostril did start to bleed, so by 2:40 I was sitting on the edge of my bed, hunkered down in full Thinker pose pinching my nose with a tissue to try and stop the bleeding. Alas, this technique, while typically successful, proved completely ineffective in this case, and by 4:30am I was just sitting there letting my blood drip into a trash can, because I didn’t really know what else to do. Many thanks to my long-suffering wife here for agreeing to take pictures at my request at 4 in the morning! :-)

Hmm, what was I thinking as this whole mess started? I don’t remember exactly, but I can tell you what I’d have been thinking had I known what was coming; “Time to get the heck out of Dodge!!”

Eventually the on-call Ear/Nose/Throat (ENT) doc was called, and he arrived at 4:30am. Then began an odyssey of pain the likes of which I cannot adequately convey with words, other than to say that all ENTs must be sadists. My apologies to any ENTs who may stumble across this blog, but you guys – I swear!!

Dr. Sadist decided my nose needed to be packed. Now if any of my you have had this procedure done to you, you know to stop reading immediately, destroy your  computer lest the following description is in cache somewhere (back up your photos first!), and schedule an immediate emergency session with the therapist you undoubtedly started seeing after you had your nose packed. For you brave few willing to see what this is about, read on!

Now when Dr. Sadist said he wanted to pack my nose, I was thinking, “Yes, we’re finally going to stop this bleeding! Break out a couple of cotton balls and let the packing begin!” So this is what I’m picturing will be placed in my nose:

I was picturing the sweet dreams I was going to have while counting the number of cotton sheep (minus legs, and, preferably, face – sorry to mutilate you, cotton sheep!) he would decide to stuff up my nose…

Yeah. So much for that, turns out it’s nothing like that. Nasal packing (it even sounds painful!) your nose is a procedure in which an allegedly trained doctor puts essentially a nasal tampon up your nose. The theory is to pack your nose tightly enough that it exerts pressure against the open wound, soaks up the blood on contact, and eventually the wound will simply stop bleeding. So, really, that doesn’t even sound THAT bad. But then the doc comes at me with this thing and says those words you never want to hear a doctor say: “You’re going to hate me for this…”

I mean, seriously?!? Most doctors say “you won’t feel a thing,” and then you feel like you’ve just had your spleen sucked out of your ear by a Dyson vacuum cleaner. When an accredited and legally licensed Doctor of Medicine says the words “you’re going to hate me for this,” trust me – it’s time to make like Forrest and run like there’s a truck full of rednecks after you!

Run, nasal packing patient, run!

So what, exactly, did he come at me with? I’m so glad you asked! See below for a picture.

Mine was the top one!

This is a device made from 2 inches of PVA foam, and when inserted in the nose it starts flat like you see it, then when it reaches the true (and excruciatingly narrow!) nasal cavity it will fold in half (lengthwise), expand as it fills with your blood, and immediately (or at least eventually) stop your bleeding.

However – what it FEELS like is being inserted into your cranium is below:

PVA foam has the consistency (and seemingly the length) of this gorgeous pine tree, but without the piney scent!

I’m pretty sure several standard-issue 2x4s could have been made from that thing he crammed up there. Here’s a picture of me the next morning, to give you a sense of just how great this procedure makes you feel.

Me doing my best Groucho imitation. I know, the resemblance is uncanny!

Did I mention there’s no anesthetic at all? Not even a local? Not even when the National Health Institute recommends a local “for the patient’s comfort”? Now don’t get me wrong, I’m not saying the doctor did it wrong. After all, it eventually worked. And I gotta hand it to Dr. Sadist, that nose was freakin’ PACKED! Not a single air molecule could enter or exit, and that’s a fact.

Dr. Sadist should moonlight for a moving company. What I’m saying is that dude can do some packing!!

Here’s an up-close-and-personal view, just so you can see how thorough the packing is.

And here’s the best part – those 2x4s up my nostrils? You get to keep them up there for 3-5 days. Yes – I said DAYS! In my case, 4 days. That’s basically 4 days of not sleeping, not eating, and barely breathing. I really can’t describe the impact (at least when piled on top of chemo) these things had on me. Suffice it to say…it was not a pleasant experience. :-)

And now, at long last, we close the circle by explaining platelets. Platelets are what make your blood clot, and platelets always go down to dangerous levels when you get chemo (or at least they have for me). Had this nosebleed happened any other time it would have been no big deal, I would have just held my nose closed until the bleeding stopped, and those frisky little platelets would have done the lion’s share of the work. But thanks to the Side Effect of the Week, platelet decrease during chemo, I was treated to a whole week’s worth of attention from Dr. Sadist. Thank you,  SEW!! :-)

Current Status, or SEW Week 1 Redux

By Tony Bliss

My last post introduced a new feature called “Side Effect of the Week” (which I lazily dubbed, and will refer to hereafter as, SEW), and the side effect I chose to highlight was the absence of platelets (and their blood-clotting magic!) created as a standard byproduct of chemo treatments. That lead to a prolonged nose bleed, which lead to prolonged nasal torture, etc etc.

Since it’s neither

  • been a week since my last post, nor
  • have we even entered the next week by any measure of the Gregorian Calendar yet

This is not, of course, technically true, loyal readers. According to ISO 8601, in use throughout much of the world, Monday is the first day of the week – meaning it’s not “next week” yet. The good ole U.S. of A. has to be different of course (metric system, anyone? Oh, the entire rest of the planet? You don’t say!), and if you look at most printed calendars in the US you’ll see Sunday as the first day printed in the weekly grid. But since I’m posting on a Sunday and that would technically be the “next week,” thus making me a liar liar nose on fiar, I am prepared to overlook America’s propensity to measure things differently than the rest of the known universe and simply pretend it’s not next week yet. Otherwise I wouldn’t have had a second bullet point – and in the blogger’s creedo, you never leave a single bullet point hanging!

you must be wondering how I could possibly be bringing up the one, the only, original SEW a mere 5 days after publication. Well, here’s why – it’s the gift that keeps on giving!

What’s happened now, or rather last Tuesday, the day I originally posted the platelet SEW, is that the bleeding from my nose stopped. Woohoo, problem solved!!! Except…

First of all, it wasn’t quite that simple with the whole nose-stopped-bleeding thing. First came the unpacking. He said “this won’t hurt much, if any,” and I called him several names under my breath as I grabbed tight on the bed railings and prepared to literally die right there of pain. Fortunately for all, no matter what else you say about Dr. Sadist, he doesn’t apparently lie – he pulled on the nose packing and out each one popped, and it was uncomfortable, but it didn’t truly hurt. So that was good!

I’m surprised Dr. Sadist went through with the removal, because if I only had any hair I’m sure I would have looked just like this guy as he approached my nasal tampon strings….

The sad thing is, the bleeding had NOT 100% stopped. It still trickled a little bit from each nostril. We were all nervous we’d have to pack it again (“nervous” not being remotely a strong enough word for me or Dr. Sadist – he saw the look in my eyes!), but as that first day went by the bleeding slowed to a stop. It slowed to a stop because my body finally did the trick, at least sort of. Both nostrils clotted, and the only bad thing about it was they were now essentially re-packed – with my own blood.

In the almost-words of Buck Owens, my nose became “packed naturally.” I know, that was a real groaner, I’m sorry. It’s the meds, people, it’s the meds!

And the doc was like, “whatever you do, don’t dislodge it!” and I was like, “don’t worry, I won’t!” However (and you Dale Carnegie graduates know that’s just a fancy word for “but!”), do you have any idea how hard it is not to touch your nose when it’s dammed up with your own crusty blood? I’m sorry, I’m not trying to be too graphic here, I’m just telling you the honest truth. At least with the artificial packing you didn’t have to worry about breathing too hard, bumping, or otherwise dislodging this incredibly fragile crust of blood that you just pray is really indicating that the bleeding has stopped. It wasn’t painful at all…I just felt like I was walking/eating/sleeping/breathing on eggshells for a while, on top of the normal chemo side effects, as we tried to ascertain if the bleeding had actually stopped.

Then, after a day or so of that, it turned out that the bleeding didn’t stop, per se, as much as move – to the back of my throat. Yes, ladies and gentlemen, instead of bleeding out the front of my face, where they could at least do something about it (painful as it was), it began dripping slowly down the back of my face – specifically, from the mucosa membrane in the back of my throat. The doctor described it as a “diffuse bleeding,” like something scraped my throat a little raw on the way down. And again, due to platelets, it simply wouldn’t stop.

Posterior epistaxis, or bleeding from the back of one’s nose, is very rare. So, of course, I have it now. It’s main side effect is that you swallow blood, and lots of it. My platelet count is still nice and anemic, and unlike anterior epistaxis, you can’t really pack the throat, so the only way to stop it is for your platelets to get off their lazy platelet booties and get to work.

According to a recent Gallup poll of me, I’m 90% grateful they can’t pack my throat and 10% wishful that they could, with a margin of error of 100% depending on whether I’m throwing up blood when you ask me. smile

Why would I wish they could pack the back of my throat? Because now I throw up – often, and violently. Turns out the stomach doesn’t like blood, not even it’s own. And when I say doesn’t like, I mean really, truly, doesn’t like. I’ve got a picture of a blood clot I threw up, but I made an executive decision not to post it (please don’t ask, this picture will never see the light of day!). Suffice it to say, it was huge. What happens is:

  • a clot slowly forms at the back of my throat over the diffuse bleeding of the mucosa membrane
  • over the course of a few hours, or as many as 12-15 hours if I’m lucky and it’s a slow day, it grows and grows
  • in the meantime not ALL of the blood is caught by the clot, so there’s a more-or-less constant stream of blood down the back of my throat (very small, but still…)
  • At some point, either the clot breaks free and I swallow it, or my stomach explodes upwards – either way the result is the same

BARF CITY

(no pictures supplied for the sake of my loyal readers…)

Needless to say, this is a most unpleasant time. On the bad news side, I’ve been on a liquid diet for several days, just trying not to dislodge clots. I’m hungry, and tired, and physically weak, because the bleeding and barfing continues on into the night. In fact – at 2:30 one night things got QUITE scary, as the clot grew so big it began to cut off my breathing. ENTs were called in, an OR was prepared in case they decided to do an intubation (where they would put me under, dislodge the clot, insert a breathing tube, and pack my throat to prevent the bleeding, meaning I’d have the breathing tube for days) or even an emergency tracheostomy (cut a hole in your windpipe below the blockage and insert a breathing tube there), and the on-call ENT was basically prepared to perform an emergency intubation there at the side of my bed in case my airway got shut off.

Dr. On-call Sadist (not my original Dr. Sadist – an underling, more of a Dr. Doogie Howser Sadist) was prepared to use the equivalent of this Dyna Med intubation kit on me at 4am one morning. And you know what? I would have let him, since my other option was stop breathing!

Fortunately for all, my bod finally came to the rescue and I coughed it out and vomited it up, and it wasn’t quite big enough to choke me on it’s descent/ascent to and from my stomach. Whew, close call!

On the good news side, no clots have been remotely that big since then, and the fact that the clots build, no matter how temporarily, means at least my platelets are TRYING, for goodness sake! And the other good news is that this particular chemo reaches maximum efficacy “around Day 14.” Maximum efficacy means that’s when my body should start regenerating it’s own goodies, including platelets and red blood cells, and the problem will at long last take care of itself. And Day 14, ladies and gentlemen, is Tuesday. As in, this coming Tuesday. As in, The Tuesday That Approacheth Nigh!

I pre-wish you and everyone a SUPER, non-posterior-epistaxis-having Tuesday!

I realize that’s still 48 hours away, and that’s no small amount of time under these conditions. Plus, “around” Day 14 is as close as the doctors will commit to – you get the standard song-and-dance from the docs about how “everyone responds differently, for some it could be earlier, some later,” blah blah blah. But please just give me this, give me Tuesday, baby – I can do until then standing on my head. Heck, that might even facilitate the yakking, which might make the time go quicker!

So that’s my current status – nose bleed has stopped, throat bleeding has not stopped, but I’m approaching the bewitching hour when it SHOULD stop of it’s own accord – and that should be the last thing stopping me from FINALLY getting out of this dern unexpected, going-on-3-weeks hospital stay. So life is good!!!! :-)

Last but not least, and just to make it more interactive for everyone, I’m having a little contest – whoever can guess closest to the number of times I vomit due to posterior epistaxis by the time I leave the hospital will win (in honor of the Olympics) a Gold Hurl Medal (well, really a certificate, because I don’t have a medal to give anyone. And it won’t be gold. And it won’t have any cash value. And it will include a standard disclaimer clause written by My Wife The Lawyer dissolving me of all responsibility from any big-headedness or other side effects the winner might get). So comment your guesses, and as soon as I’m released from the hospital I’ll declare a winner! In the event of a tie, the first posted comment with the closest number will be declared the winner. Do I actually track that, you ask? The answer is yes, we track pretty much everything (my wife IS a lawyer, don’t forget!), from vital signs, to times meds were taken, to yak attacks.

And is this contest in good taste? I can tell you for SURE it does not taste good from my end, but as to you discerning readers, I’ll let you decide on that for yourselves… :-) Carefully consider your strategy before guessing – the key is I’ve had this condition since last Wednesday, and the Hurl Medal count stops when I’m released from the hospital, and we don’t know when that might be. Do you take a chance and make your guess before you know I’ve been released, or do you wait until I post that I’ve been released and then hurry and make a guess? Another thing to consider – I could stop bleeding any time now, so it’s possible I could have had my last Hurl already, and remain in the hospital for another day or two for observation – you just don’t know! The options for guessing, my gosh, the options!

One guess per customer, please, and no change-ies – all guesses are final!

Let the games begin, indeed…

Gold Hurl Medal winner announced!

By Tony Bliss

Dear Readers,

First, my apologies for the delay in posting the winner of the Gold Hurl Medal contest announced a week ago. I have  my reasons, which I will explain soon in my next status post. Nothing ominous, so no worries, please!

And now, without further ado…

After careful consideration of my wife’s excellent record-keeping, I determined that I hurled exactly 12 times from Wednesday, July 25th, through Tuesday, July 31st! The winning reguritary (I’m pretty sure that’s not really a word…) event, the meal so nice I saw it twice, occurred a mere hour before leaving the hospital that Tuesday, but I didn’t tell hospital staff because I didn’t want to jeopardize my departure.

Three Dog Night famously sang “One is the loneliest number,” but last week twelve felt pretty lonely, and like I might be pushing up daisies at any moment. Many thanks to my wife for sitting by my side and cleaning up after each and every yak attack – she earned the Golden Wife Award x 1000!

Here’s the breakdown:

  • Wed – 2
  • Thurs – 3
  • Fri – 1
  • Sat – 3
  • Sun – 2
  • Mon – 0 (thought I was out of the woods at this point!)
  • Tues – 1

I apologize to all those who guessed so high – apparently I wrote a bit exuberantly relative to the actual number of  hurls and left the impression that it was more often than it really was. The worst part was the anticipation – I could feel the clot building, often for hours before it saw the light of day. Then I knew it was just a matter of time… I’m sorry if my writing was misleading somehow, but I promise, each and every one of those events was quite vivid to me!

Anyway, I tried to hint a little bit in the post by saying it was “sometimes as often as 12-15 hours apart,” but I didn’t want to get more specific than that – I didn’t want it to be too easy! But most of you imagined much worse than that and I should file charges against all of you for attempted murder with the high number of hurls you guessed! I’m so happy you were so wrong, otherwise I’d probably be in a coma. :-)

And now to the winner!

The winner is non other than my old high school friend Bobby D., who is the only one who guessed the exact number – congratulations, Bobby! Your Gold Hurl Medal certificate, which will look something like the one below, will be in the mail, um, after I design it and print it sometime in the near or distant future. Meanwhile just lord your victory over friends and family – that’s usually all the satisfaction I need, and it will prevent you from holding your breath until the certificate arrives…

The average guess out of 15 guesses was 23.6, and there are a couple of honorable mentions based on the remaining guesses. My friends Josh and Karen tied for second, with guesses of 13 and 11 respectively – I’m glad Bobby intervened with the exact number, as I would have hated to see bloodshed between my two friends as they fought for the honor of winning this coveted award.

My friend Christy, who (coincidentally…?) went to law school with Deborah, must know my life insurance is paid in full and want a better life for Deborah and the kids, because she had the high guess of 51 (there’s a special place reserved for YOU, my friend! :-) ).

And a special commendation goes to my new best friend and all-around good egg Don, who guessed 5, the lowest guess in the contest. You, sir, are a scholar and a gentleman, and a humanitarian to boot, and I applaud you!

I don’t know if Don will wear a dress in Heaven, but he’s apparently a transgender angel in my eyes!

Thanks to all who participated!