The Chemo Chronicles - Part X

    December is a cold month here. Snow is accumulating, and I can't go for my daily walks, just too damn cold outside.  I watched my neighbor as he took it upon himself to shovel out my driveway.  Great neighbors, knowing my condition and my aversion to manual labour he did what I could not do.   Then the snow stopped and the Ice Age began.  That  was Sunday.  Monday I was forced to venture out to get my pre-chemo bloodwork done.

     Monday was sunny but oh-so cold; thankfully my down-filled jacket kept me warm, although I do tend to leave a trail of feathers everywhere I go.  But let me ask you, if down feathers keep you so warm, why do all the bird fly south?   However the bloodwork was done in a short time, and as I did not not receive any calls postponing my next-day appointment, Chemo #10 was on track.

    Tuesday (it is a chronicle after all) December 14 I showed up  at the Cancer Centre Pharmacy to get my 5FU pump. The pump was not ready again for the 3rd time in a row, but will be in time for me to go home.  For as much that is discussed about the side-effects of the chemo, I find the pump to be what really drains me. But it's only for a few days, and since I did it before I can do it again.  Only two more treatments after this (hopefully). 

     Chair #9 will be my chair for this session.  With the AVASTIN  in addtion to my 'regular' chemo medicine, I'm in it for almost 4 hours.  Fortunately I have my trusty Acer Aspire Netbook beside me-for the past 9 months it is attached to me as close as my IV Port.  I wonder if I should have a USB  port installed in the same fashion as the IV Port! (don't laugh, there are people who are doing crazy implants like that!)  Well I don't really want to become Borg-like, but without my electronic escape I really do feel lost.

     The chemo process is goes off routinely: blood return ok, saline solution, chemo meds and avastin.  Drip-by-drip over a four hour span.  The two shots are administered immediately after my washroom breaks.  This time however my IV pole had all good wheels; some of those poles act like they were shopping carts in a previous life (always one with a wobbly wheel).

     Prior to chemo my breakfast is light, just some Special K and toast and banana.  In the chemo chair I can't tell if it's hunger pangs or I'm going to get sick, the two feelings are both linked and constantly at war within me.  My appetite is the loser however, and I barely eat anything but some soup and a few chicken nuggets when I get home.  I had refused the kind offer from the Hospital for their lunch; I'm brave but not that brave.  Oh, stereotypes of bad hospital food aside, ithe lunch is generally ok, but my tastebuds refuse to accept that what is on my tray is actually tasty.  There's a wisdom that one does not eat one's favorite foods during chemo.  Bland foods seem to be what I can stomach.  In my early days of the chemo process I would sometimes wake up late at night with a craving, and would get up to satisfy that craving.  Lately however I find I need to discipline myself to eat.  Small meals, snacks throughout the day really, I don't eat 'three squares' anymore. (look up British naval history for the reference to 'three square meals', I believe it has to do with the wooden serving plates the men were given. But I digress)  What bothers me more is that I find that I am not drinking liquids. My water glass, a fixture on the table next me remains untouched.  I should be drinking a glass ever hour or two I think.  Water just doesn't taste the same during chemo.  Sometimes I squirt a little lemon juice into it, or supplant it with juices.  But not all juices -anything like OJ or Tomato that is mildly acidic can be painful to drink during chemo, the whole mouth is sensitive.  Make sure your toothbrush is EXTRA-extra-soft, for the bristles can irritate the gums.  Forget flossing unless you enjoy the Steve Martin-Bill Murray dental scene from "Little Shop of Horrors".  Remarkably though, once I've endured my 3 days of chemo within 24-48 hours my normal activities can be resumed.  Were it not for the exrtemely cold weather (and me an ex Northern Ontario lad) I would be walking outside all the time.  Oh and I learned my lesson about physical extertion during chemo time:  Don't.

   My chemo session was nearly over when a new patient sat down in the chair next to me.  Her treatment was about to commence when she pulled out a laptop.  A netbook really.  She noticed I was using my netbook and came over to see if I was able to get on the internet.  As I was happily surfing away, I assumed it was her connection.  She asked if I wouldn't mind looking at her computer, and once I revealed my IT credentials she was so very pleased to have a 'tech suppport' guy right there.  So now the pressure is on me to live up to my self-hype as an IT tech.  Sure enough when I checked it out her IP was acquired by IE7 was not bringing up the login credentials page.  I knew it worked earlier, as I was on my laptop (running LINUX, with Firefox.  Remember that for later)  So I did all the usual Windows things, cleared caches, reset security, the laying on of hands.  Still nothing, I would actually observe the Cisco redirect, but IE7 stalwartly refused to display the page.  I was running out of time as my session was now completed by this time and I really wanted to go home and rest.  Still I had few more tricks up my sleeve; although I run LINUX as my primary OS, my netbook is dual boot (plus I had virtual box installed so I could run OpenBSD or Win2K if I really wanted to).  But I booted up into XPHOME (same as the other netbook) and tried my IE7 out.  Sure enough same issue.  Oh Bother.

   Plan B, where the B stands for reBoot. Back into linux, could the session authentication be down?  Nope, I was in in a flash.  A Flash drive would solve the problem,  fortunately I happened to have a live linux distro on an SD card and a usb-attached card reader (acer's don't boot from SD. Pity)  So I took the liberty of booting in LINUX using the above-mentioned tools.  Sure enough, bringing up Firefox allowed the hospital credentials to be entered and she was able to access her mail sites.  Even after I removed the USB drive the live distro kept working with firefox (although not sure if anything else would work, or for how long).  When I left however it was with the knowledge that I had made someone happy in place where happiness can't always be found.  I will always take the small victories.

    Once home I could feel the energy levels drop, as expected.  Some soup for lunch then a nap.  No supper till later, and no appetite of course, and more worrysome for me, I did not drink much water.  Chemo pills at 9PM, some tv and sleep.  Sleep was hard, the first night on the pump I always feel like I'm going to be sick.  Finding a comfortable position was tough, but lying on my stomach  seemed to alleviate the feelings of nausea.   I don't recall this feeling from my first round, perhaps it's the lack of gall bladder exacerbating my already strange diet during chemo.  Deep breathing helped a bit; perhaps that is why so many cancer patients turn to Yoga to help them cope.  My weekly exercise class (now on hiatus til sometime in the new year) often introduces Yoga techniques, although my approach is more Yogi-Bear like.  Still I remembered the walking through the clouds and another breathing exercise whose name escapes me.  The breathing seemed to be the most effective, and eventually the nausea feelings subsided enough for me to sleep.

    Sleep while wearing a 5FU pump for me is like a chicken and egg thing.  In my first go-round of chemo I would remove the pump from the attached belt and place it on the nightstand.  Invariably I would roll over causing the pump to thud to the ground and pull at my port, waking me up with a start (and an annoying pain, it's a 27" needle thats in me. Or something like that.)  This time I keep the pump in the attached belt, leaving it on and shift it around me as I sleep.  Of course I wake up every time I need to roll over, fear of crushing a bottle full of toxic fluids does that to me.  So I gingerly maneuver the bottle like a mother hen watching her eggs.  My sleep is not deep and restful, but that's what Saturday mornings are for.  And Mondays when at work.

     My sleep was troubled this first night with a recurring dream.  It is the one that starts out with me staring in blackness, wondering when "it" will be all over. That's the bleakest of all my feelings, but strangely coupled with it is my  choice for pall-bearers.  Really, it's something I've thought about almost since I was diagnosed with Cancer.  At first it really  bothered me, later on I would actually think about it as it's a choice that needs to be made.  I like to think I am a pragmatic person, 20 years ago I made the arrangements to pre-plan my funeral.  That's all taken care of,  no additional stress on those around me when that time comes.  However I find the choice of pall bearers a significant one.  I have two brothers and a brother-in-law on my side of the family.  I have her brothers-in-law on her side of the family.  And I have my life-long friends.   I have my choices representing my family and friends.  But here's where I feel uplifted: I have so many choices, so many people I can call true friends.  I am truly comforted by this thought, and I sleep peacefully after that.

    Well the second day of chemo coverage was without incident.   Sleepy at times, hungry too, although mostly small meals. My throat was dry and I found I craved ice cream, that seemed to soothe it and no reactions from the lack of Gall Bladder  were noted.  Although the taste buds chose to make Hagen-Dazs ice cream taste a little off (more like Hagen-Daze) however it did the job.  I managed to focus on some small tasks (like solving 143 tactical chess problems on Chess Tactics, 125 correctly, 4 mouse slips and the remainder were glaring oversights to my game. But I had fun.)

    I was really tired thought and by midnight (after having the pre-sleep nap), I simply crashed,  slept much better through the night and wasn't bothered by any non-optimistic dreams.   Woke up to sunshine, had my pills (Zofran, Decadron and my EuroFer Iron supplement).  The problem with all these pills is that they tend to  bind me up, but lots of water, lots of raisin bran and flax seeds and more water and prunes helps.  Stupid side effects of the medication.

   There is still some soreness in my chest if I do even non-strenuous physical activity.   In a day or so once the 5FU bottle is removed I should be fine however, and able to build chemo clock #10.  I ran out of PCB boards, so step one is etch a whole new series.  Usually I do 6 at a time, but the way things have been going I might have to increase that number.  Who knew I would have an obsession with tube clocks!?   But I do more than tube clocks, it's the Christmas season, so a LED-based xmas trees needed to be built:

assembled LED xmas tree 16F630 style

 The finished christmas tree project uses a PIC16F630 to make pretty lights blink on and off, on and off, on and off..ok you get the idea. I have LEDS and PCB's and time to make silly things that I enjoy. 

blank PCB for xmas tree

  
  Here's the back of the board, before drilling.  One of the hardest parts of this project was cutting the shape of the PCB to the 'xmas tree' style.  One day I'll get better at it I hope.  This was a fun project, done just two days prior to my chemo.  I spent a chunk of time programming until the wee hours, which might explain why I was so tired the day after!



    Now it is Thursday, the last day of session #10, my pump scheduled to be removed this afternoon.  The bottle is almost exhausted, but I feel much better now.    My weight has gone down to 172.2lbs, but I was only 173.8lbs the day of chemo.  I haven't been this weight since the 80's but my past experience tells me that once I'm off chemo I will gain weight rapidly and keep it on.

    Now that I am free of my cytotoxic 5FU bottle, I can finally sleep soundly and indulge in the comfort of a shower (can only take a bath when wearing the pump).  It's the little things in life which make such a difference in one's outlook.  This tenth round of chemo  was somewhat better than the prior two, no doubt as my body adjusts to being whacked with poison.

   I made it through the process one more time, only two more sessions left.  Then the CT scan in February and we'll see how effective my ongoing treatment has been.   I don't really look for outcomes that far ahead, I endure what I need to endure, and make decisions when the facts are all assembled.  I remain cautiously optimistic about return to my work, about returning to a 'regular' life. 

  So far I have hit all my milestones, have come through the chemos and the surgeries with the best possible outcomes, and remained  positive and focused upon becoming healthy.   My hope is that the New Year will bring me to a healthy conclusion of this ongoing battle.  February will mark one year since the whole process started, with what was once a "routine" physical. Until then, I will enjoy life as best as I can.

Not toKnight dear, I have a headache . . .

     Thus far writing my blog has proved to be therapy for me.  I get to write about the biggest life-altering event in my 51 years and its effect upon how I live and view life.   Since it's all about me,  I can write whatever I wish.   I wish  to write about Chess.

      Through the years Chess has meant for a me a passion, a hobby and lately a diversion to help me balance my thoughts about life.  My earliest chess introduction stems from the legendary Bobby Fischer vs Boris Spassky world championship of 1972.  Now almost 40 years later, this match is remembered not so much for its games but from the struggle of personalities associated with it.  The mercurial Fischer has passed from icon to Mythic Figure to symbolize the lone chess genius able to defeat the world armed with nothing more than brains and desire and ego.  It is a classic Horatio Alger story for the Chess world. 
    
     I played this game with single-minded pursuit in my youth, but by the time I left home at 18 the game and I had become distant.   Years passed, and I played but rarely.   Then with the Internet came the Great Online Gaming community.  I learned that my hiatus from the game didn't interfere with my skills, as I quickly found out I had none.  Also, playing opponents from around the world at 1AM is not optimum.  I was rather disappointed; playing online is like playing against a computer (and sometimes the two are the same).   Playing chess is a social sport, despite the perceived view that chess is for the 'socially distant' members of society.

     After my initial round of chemotherapy finished, and just before my Liver surgery I found myself with some free time.  A couple of things happened,  one is I began to think about the upcoming surgery.  I thought about it a lot.  Unlike my first surgery, which was over in days, I had almost six weeks to contemplate the consequences of any failure.  Worse, I had time to construct many many 'worst case' scenarios if the surgery went awry.   Thinking of all those scenarios was not conducive to my mental and emotional health.  Bike riding was a nice distraction, but a) it's hot out and b) I can't ride umpteen hours a day (yet).  I needed a diversion that would let me enjoy my life and not allow me to think about the herd of tumours rampaging through my body.

     The second thing is I found Chess, or perhaps it found me.  The local Windsor Chess club was holding a series of weekend tournaments at the University of Windsor.   So one fine sunny Saturday morning, I sauntered (because people would think it odd if I sashayed... ) off to the tournament site.   I met the Tournament Director, a very nice fellow who of course encouraged me to join.  Since I was looking for a casual game, the stress of a tournament wasn't exactly what I needed.  I was curious to see how tournaments were run, and the calibre of the games.

    What I found was that the veteran players are very, very good.  Master class, way out of my league.  But the real surprise were the kids:  they are serious about the game and absolutely fierce competitors!  I had an opportunity to play one young man, say 10 years old just before the tournament started.  He beat me.   I lost so badly to him that I wasn't even embarrassed,  merely astonished at how good a 'small child' could be.  He was gracious in his win, we shook hands in the gentlemanly way,  and he kindly offered to play me again.  This time I didn't play him like  a kid.   I admired the way he hung on, hoping for a stalemate as I crushed him, taking all of his pieces leaving him with only a king and no chance to win.  My victory against a 10 year old only showed how much I didn't know about this damn game! 

    Having one's technical (in)abilities highlighted by a child, even an exceptionally gifted one,  is mildly ego-deflating, to say the least.  I would hang out at subsequent chess tournaments, watching, occasionally playing in the skittles room (ie. the room where non-serious chess may be played) and mostly losing.  But I had achieved my objective; by playing chess  I had engaged in an activity which distracted me from my surgery, my cancer and worrying about life. 

    Through the remainder of the summer until the time of my surgery I would venture forth to the local chess club, playing and mostly losing.  In the months after surgery, I would attempt to learn in a more diligent manner, but the second round of chemo would throw me for a loop on occasion.  Not exactly chemo brain  but concentration was difficult.  Apparently the ability to concentrate is a necessary aspect to play good chess...hmmm

     With  the successful completion of my surgery I realized I still wanted to play chess. Given my dismal record against 10-year-olds, I better give some thought to actually studying the game.  Learning is hard, but you have to be alive to learn.  The payoff though is not winning or losing a chess game, but the realization that Cancer be damned, I can still do something challenging, can still accomplish reasonable goals, and most importantly, have some fun with my life.

The Chemo Chronicles - Part IX

     My ninth chemotherapy session was December 1st.  The day started with soft puffy snowflakes.  Recollection of Christmas' in Northern Ontario brought back fond memories of playing in the snow as a kid.  Even to this day, a snowfall can still get me out into the back yard and return to the days of making snow animals

Mr. Bunny, meet Mr. Squirrel

    However the snowflakes didn't stay around very long, but did put me in good spirits.   As in every prior session, I login to the registration computer, pick up my 5FU pump (oops, not ready yet...) and  in this case, picked up refills for my chemo meds.   I wear Mr. Pager until such time as my chair is ready.  Soon enough I am once more in a position where I feel great coming in and just mediocre when I leave.   I explain to my nurse that the last 5FU bottle removal did not have a successful blood return after my visit two weeks prior. I fully expected to have a lengthy session to simply get the blood return thingy working, but was pleasantly surprised when my nurse was able to get it working on the first try!

     I seem to be the only person who ever brings a laptop to these sessions.  Many however have their headphones on, books and magazines are always present, and there are caregivers for almost all the patients.  Almost all patients, as some are solitary.  Sometimes it's just as hard on the caregiver to be there, the support role now usurped by the professionals.   For some it is  hard to watch a loved one undergo the process.  Fortunately for me I am not alone.  Sometimes we talk to the other patients,  encourage each other,  put on our brave face and confidently face down our fears.   We are all veteran of the Cancer Wars.   I have always said that Cancer may kill me, but it won't beat me.  I believe in those words as I believe in myself.

    Returning to the laptop, my virtual escape from the chair is aided by my trusty Acer Aspire One Netbook.  Free WiFI for us patients allows me to write in my journal,  to keep in contact with my family, friends and coworkers, heck I even wrote some shell and Awk scripts for a friend of mine who wanted to move specific files from one directory to another on his computer.  He was most amazed I was writing them from the chemo chair.   Programming from the chemo chair, with an IV hooked up to my port.  Plus I get free coffee and cookies if I want, but alas, during these times I have absolutely no desire for either.

    It seems that the longer I sit in the chair the less my attention span can be maintained.  Of course my nemesis returns each time I have chemo, and for that I have the two shots to take care of the nausea symptoms.  My chemo treatment is more or less routine this time, however I now receive my first session of Avastin, the magic potion to inhibit new growth of blood vessels, so tumours can't find a source of nutrients.  I was quite eager for this, due to the word 'AVAST' in Avasatin.  AVAST of course is Pirate Talk!  Arrrrgghhh Matey, it's now time for Bad Pirate Puns.

     Prior to this session I had constructed and pre-tested some of my Pirate Puns on a few unsuspecting individuals.   I was actually considering finding a suitable hat, eye patch and parrot, but decorum and common sense won out. Fortunately the Pirate Puns were more-or-less well received:

    "I'm a land-locked pirate, the closest I get to the High Seas is me Orange Juice!"

    "Avastin! That's Pirate Chemo, delivered by me nurse with the wooden leg, Peg!"

     "We're Practical Joke Pirates!  Prepare to walk the prank!"

     "I get all me Pirate boots and shoes from Davey Jones Foot Locker....arrrgghh!"

      When the opportunity presents itself to find humour in the horrible, you go for the humour ever time.  Besides, I'm a glutton for PUNishment...

      My session was relatively uneventful, save for the spate of bad puns.  I tried to indulge in the Hospital-provided lunch (chicken noodle soup and chicken salad sandwich, peaches for dessert) but my appetite was simply not there.  Tired as I usually am after these sessions, I basically get home and sleep.   It seems to me that my past two chemo sessions have taken more of a toll on me than the first round, whether it is due to the surgery, the extended time between sessions or simply the weather and my own mood, I simply don't know.  

      My mood the day after chemo wasn't too bad.  I was up fairly early and content to do my morning routine of email and surfing, when suddenly my iternet at home vanished.   Terry the Techie now took over.  I checked out my DSL modem, my router, my wifi...no sync.  I contacted my ISP, and I tried a different modem. Still no sync.   A  technician was sent over and he confirmed it: No Sync!  So now Bell is involved and a day later after all their tests they managed to actually unhook my telephone line altogether!  So now I had no DSL sync and no voice.   My ISP was quick to work through the problem with Bell, and several hours before I was due to have my 5FU pump removed, a Bell truck rolled up to my house.  

     Inside wiring was ok, but the wiring on the pole was bad.  Squirrels eating the insulation on the lines is the official reason.   However there was a matter of the voice being left unconnected at the remote site after testing my line for DSL sync.   However once the new cable was strung from the telephone pole to my house, the magic of the internet returned, and with it, my telephone circuits.   One of the first things I did was to check my voice mail box...which had a message from Bell repair to call them..

     So for a day and a half I was disconnected from the rest of the world, and I didn't mind it a bit!  All that activity in problem-solving mode did not involve anything to do with the Cancer,  and I felt like I was doing something useful.  That Friday was very busy, for earlier that morning I had a service tech come over to the house to perform routine maintenance on my old, old furnace.  My neighbors Carbon Monoxide detector had recently gone off and they needed to get their furnace replaced.  I don't even own a CO detector - yet.  As soon as I can get out of the house I'm heading to Canadian Tire to pick one up, stat!  Oh, and my 30 year old furnace was tested and is fine, no CO leaks, and while not efficient as modern ones, still heats the house up nice and cozy.

    As the day flew by, all the excitement from the comings and goings of the various technicians was wearing on me.  I was tired, but my 5FU pump still was scheduled for removal at 2PM that afternoon.  No nap for me.   Off to the clinic to have the pump removed.  This time it was a breeze, no problem with the blood return, a record time of 15 minutes from start to finish.  Finally I could have my well-deserved nap later that afternoon.   And I did!

     Six hours after the pump was removed and an hour long nap seemed to provide me with a bit of energy.  I went for a walk, just to the local mail box.  A trip that would routinely take me 10 minutes there and back.   In the past I have commented that a recurring side-effect of the chemo medication are sore chest and arms after exertion.  I know from first-hand experience that any prolonged physical exertion like walking causes me chest pain.  Not the stabbing I'm-having-a-heart-attack, nor the heart-pounding likes it's going to explode, no this is like a compression on the heart.  It's sore, and my arms around my biceps get sore as well.  So for me to walk that distance and not expect repercussions was just plain stupid.   And I paid for that stupidity.   The walk there was not too bad, it was the return trip.  Walk a few steps, feel sore, feel sick, stop, crouch down, wait.  Repeat.  I shuffled more than I walked.  My chest was sore, I was frustrated with my body's inability to cope and angry at myself for being so stupid.   A mere six hours had passed since the pump was removed from me, I know I need at least 24 to feel 'better'. 

     The walk continued, more shuffling, more rest stops.  Ten minutes turned to 20, then almost 30, for a trip that would normally take me five minutes.  I wanted to get sick.  I wanted nothing more than to lie down on someones yard and rest.  It was dark and cold out and stupid me was clutching at my chest, shuffling along,  randomly crouching down to rest.  If someone was watching me they would think that I was having an early start on the Christmas Cheer.  I made it home and as I got inside the house,  I just sat on the basement steps for minutes trying not to cry from the pain.   The rest of the evening was extremely low-key to say the least.  I had yet another nap, only waking up to take my last chemo pill of the 3-day regimen.

     What had started off as a pleasant morning three days prior almost ended in disaster.  My ego overrode my experience, and I paid the price for it in pain.   This ninth session will be remembered more for what I should NOT have done, in this case it would be to not exert myself until I am fully recovered from my session.   The journey will continue, but perhaps at a more sedate pace.