Them's the breaks ...

  I broke my leg Saturday November 21st.   I spent that weekend  traveling to and from the local hospitals to get  a full leg cast.   Monday I would see my Oncologist. Tuesday I was scheduled to have my seventh chemo.  However the results from the oncologist would end up giving me another break, this one from  chemo.

 Monday afternoon I'm at the Cancer Centre, my new cast making simple operations like, say, walking, a challenge.  With the car parked as near the door as  it could,  my driver ran inside and returned with a wheelchair.  Entering and leaving a vehicle is very awkward process:  I end up having to push myself as far back in my seat and slightly up (OK my head hits the roof).  Arched like that, I can barely swing my left leg out.   It takes all my efforts to stand up.  It's definitely easier to sit down.  I'm wheeled into the cancer centre.  From there a kind volunteer assists me:  first I retrieve the obligatory paperwork from the reception desk.  Next I'm brought up to the second floor, where I'm brought to the ESAS computer terminal.  Rather than have me leave my chair or try to wriggle me behind a screen, my volunteer acts as my proxy, typing in my OHIP number and my responses to the ESAS questions.   With the results printed out, I wheeled to another waiting area where another receptionist takes my paperwork.  With  his duties completed, my elderly but energetic volunteer cheerfully returns to his post, while I wait to be called in for my appointment.

 Waiting wasn't too long, and my name is being called.  My nurse is surprised to see me in a wheelchair, with a full leg cast that makes my leg thrust out  like a battering ram.  Due to my current state I get to bypass having my weight checked. But routine temperature and blood pressure measurements are still performed.  I'm 'normal', I guess that's a good thing.  Of course I'm asked what happened and I tell her the gory details.  My nurse departs with all this updated information to give to my oncologist.  Shortly after the nurse leaves, the doc arrives.  He is surprised at what I've done now.  In short order I tell him that the doc at the Fracture clinic wanted to do surgery.  But with the Avastin still coursing through me, that's contra-indicated. So we settle on this:  I get a break from chemo (this is  the good kind of break).  Now for the results of CT, the reason I'm here.   Short answer:  Status Quo.  There is some minor shrinkage of some tumour, but I focus on the 'not growing' aspect.  I suspect my oncologist was hoping for a better result, in truth, so was I.

 So after the perfunctory inspection (I didn't have to get up on the exam table fortunately), I was given another appointment time, and for a few weeks, a reprieve from chemo.  In January of 2016 I'll  return to the Cancer Clinic and we'll start fresh, possibly with even more potent chemo.  Oh, joy, I can hardly wait to see what new side effect this will have on me.   

Over the next few weeks I'll have several follow-ups with the Fracture clinic to assess my leg.   I'll learn how to navigate around household furniture using crutches and my natural, catlike reflexes (OK, just crutches).  Taking a shower is still a challenge, but a refreshing one.

Through the dark gray December days I cope as best as I can to work through the everyday challenges -getting dressed, shower, even going to the bathroom.  The hardest part is the feeling that I'm not contributing.  I can't take the garbage out, can't go to the basement and bring food up from the freezer.  Can't is a word  that does not sit well with me.  There are some solutions -an office chair with wheels lets me scoot around the kitchen to make my breakfast, but I can't carry a simple glass of water without risk of spilling or dropping it.  And everything takes forever for me to accomplish, as I need to figure out how to best extricate myself from a sitting to a standing position; I'm always looking around for support whenever I move.  Bed time is sometimes tough,  my inability to sleep on my side is frustrating.   Waking up in pain as my cast-leg gets stuck in the blankets. Sometimes I can't sleep, and I get emotional.   But I have a caring partner, and I know that the bad times won't last forever.  I endure what I must, and dream of walking in the Spring once more.

My last Fracture Clinic visit  of 2015 happened in mid-December.  After the obligatory 2 hour wait and 10 minute examination, my doctor observed that the bone seemed to be healing.   For that auspicious result, I won't have to go back to this clinic until mid January of 2016!  I hope by then there will be sufficient healing that the cast can be removed, or at least reduced so I can bend my knee. A full length cast is just so annoying!

Christmas was peaceful but emotional, and I wonder if this will be the last I spend with those I love.   Eventually the pragmatic side  returns,  and I resume my mantra of "I live for Today, I hope for Tomorrow".   One day at a time.  All the little things that help me get through my day.   Despite the emotional roller coaster and my inability to 'just be me', I did accomplish a few things.  One was the arrival of some cool electronics from a dear friend and former roommate of mine from my University days long ago.

As those who know me are aware, I love to dabble in electronics.  Things that make LEDs light up delight me in and keep me enthralled for hours. So imagine how happy I was to receive a package from my ol' roomie that contained nearly two dozen circuit boards and a ton of components. I was ecstatic, only one problem:  I couldn't get to my workshop to assemble anything.  The solution was to move what I needed upstairs, and helping with that was another friend.  I truly am lucky to have such great friends.

The end result is no surprise to those that know me:  more clocks!

My time is spent mostly on the couch with my computer, puttering when I have the energy on my hobbies, and trying to get a good nights sleep.  I dream of walking, and my hope is that the new year will make my simple dream come true.

The Chemo Chronicles - Part XVIII

  I was all set to write about what was by far the easiest and (almost) boring chemo thus far:  my 6th chemo of this second round.  Instead, after two weeks of doing activities that made me happy, that granted me independence, that made me feel like I was making a difference again, life changed abruptly.  It was all because I walked down my basement steps.

Back in June of 2015 it was determined that the cancer had metastasized to the bone of my left leg.  I had radiation therapy  for five days at the end of June. A month later I twisted my right knee.  The Fall would see me barely able to walk.  Finally during the past three weeks my right knee felt strong. I walked.  A lot.  Earlier in the week I was feeling some pain in left shin, Tylonol seemed to manage that.  Secretly I was afraid the cancer had returned. 

What happened next was a change of life.  My mobility failed me by walking down my basement steps on Saturday November 21.  One moment I was descending the steps, the next I was holding onto the handrail, screaming for JoAnne to help.  But Jo had left for work mere minutes ago.  I was alone, on my steps, knowing I had broken my left leg.

Still yelling for help that no one could hear, I crawled up my steps.  Then along the kitchen floor to the nearest phone.  I was able to reach it.  Then to the fridge for my neighbors number.  I called, the desperation and fear in my voice asking for help.  I was greeted by voice mail.  My  plea for help left, I had  a realization.  My workbench had a hot soldering iron on it.  Visions of my house burning down made me do a crazy thing:  I crawled back down those stairs that have twice changed my life.  I  crawled further still, into my workshop, reaching up to turn off the soldering iron.  Still galvanized with some energy that came from somewhere unknown, I crawled up my stairs again, across the kitchen floor, opening my front door.  Finally I called 911, and got the Ambulance dispatcher.

In the midst of the call my neighbors arrived at the door, their looks of concern  remain forever in my  memory.  I actually cancelled the call for the Ambulance, thinking I wasn't in pain and they'd just drive me to the ER.   My neighbor Mike, a former ambulance attendant himself calmly assessed me and concluded an ambulance was warranted.  Once more I called and in a short time I had two very professional ambulance attendants in my house.   A  plastic-type brace was  placed on my left leg, securing it.  Next I was put into a chair, to carry me out the house.  My three steps leading into the house were no obstacle for these folks.  Finally I was smoothly transferred to a gurney,  and for the first time in my life, I would have an ambulance ride. 

Adrenaline, shock, fear, all those combined to keep my blood presure high.  I felt no pain at all during this time, either from the break or during the  ride to the ER.  My bad jokes were endured by my ambulance host with good graces; she no doubt has seen this behavior  many times before.   I arrived at the ER and was whisked inside.  I was in good spirits. I knew I had a broken leg and that I'd probably have a cast.  What I didn't yet realize were the extent of the changes this would bring into my life.  What I would soon realize was the effect it would have on JoAnne.  Caregiver extraordinaire,  her burden would soon become heavier.

Once inside and registered in the ER, I was put into an exam room. My doctor naturally called for Xrays.  I'm shuttled down to the ER Xray room, the tech smoothly managing positioning my bad leg with a minimum of yelping from me.  No pain, unless I twisted my leg. Or moved my leg.  I guess the adrenaline was wearing off.  Xrays completed, back to the ER room to wait for the results.

Soon enough the ER doc has reviewed the pictures and determined that it was a 'simple' break, without too much displacement.  That meant no setting of the bone, it would be in  a cast 'as-is'.  It looked pretty deformed to me but it's only my leg.  First challenge: pants.   

In order to put on the cast,  my pants would be removed.  They wouldn't be able to go over the cast.  Our first winter-type storm, with snow and freezing temperatures would greet me when I left the hospital.  I didn't want to go outside in a hospital gown, so Jo drove home to pick up some baggier shorts.  The temporary splint would fit under those no problem.  By now I had been in the ER over four and half hours.  Time was going by quickly, the mini tablet I had was spewing forth emails to family and friends.  I was distracted from the reality of what was going on around me.  Then, I realized that laying there, on yet another Hospital bed, that this was not going to be my last time here.

Alone, tired, the shock and andrenaline  gone I was moved to tears with the realization that my life was irrevocably changed.  I won't ever walk like Terry once did.  My mobility, my freedom is now gone.  But the worst were the thoughts about my partner JoAnne: on her shoulders would all my care lie.  I cried in that ER, thinking about how unfair it was that something that affects me affects all those around me.   Not for the last time I wondered if this was all worth it.

Tears are cathartic and cleansing.  At least that's what everyone tells me.  The good news is that I did a lot of that cleansing after I left the ER. The  temporary cast was applied and as the wet strips hardened I felt better.  I still wasn't experiencing any traumatic pain, I was being cared for by professionals,  I had nurses asking me about my cancer journey.  The compassion of all the medical professionals was evident in their concern and care.  I did not feel alone.

When I got my shorts I was able to change without too much trouble.  Now the ER doc with three nurses assisting put on my temporary cast.  It's weird, the layers go on soft and wet, and warm.  The heat transforming a soggy bunch of fabric into a rigid cast within 20 minutes.  I get my discharge paperwork, and an appointment time for the fixed cast at the Fracture clinic, scheduled for Sunday morning at 730 am.  After five and half hours in the ER, I can go home.

Me with my temporary cast 20151121

Getting home would be the next challenge.  From the ER I would use a wheelchair to bring me  to the car waiting to pick me up.  I'm tall, and a cast that prevented my knee from bending presented a logistics option: how to get in.
But I managed through grit and perseverance (and ignoring, mostly, the painful reminders of why I was wearing a cast).  Getting out of the car and going up my steps would be the second challenge. That's where my guardian angel, in the form of my neighbor Mike once again rescued me.

I was able to extricate myself from the car, and clumsily used the crutches I had used for my previous knee injury.  It was a shaky entry into the landing. There were two more steps to climb before I would be in the house. That's when my angel helped.  With practiced ease of someone trained in helping people, I was gently helped up the stairs. Hands locked on my wrists I was  placed onto a chair, from which I could once again stand on shaky legs.

My adventure would continue, I could barely walk even with crutches.  The pain albeit minor, still announced it's presence whenever it decided I did something stupid. Which I did routinely.  Everyday activities - getting dressed or undressed -pulling off my shoes and socks were an adventure in engineering.  And the worst part -my bathroom commode faces my bathtub.  With less than 24 inches of free space, my cast preventing me from bending my knee caused the use of the facilities to be far more acrobatic than anticipated.   I also know why there are hand rails in bathrooms. Pity I don't have one in mine.

I am if not smart, at least determined.  I managed to overcome my obstacles one at a time.  For the most part my usual method is patience.  Wait long enough and problems resolve themselves.  In two months (probably  more...) my leg might be healed and this won't be a problem anymore.  Knowing that the problems will go away in time however doesn't replace the reality of the now:  sleeping with a cast is damn uncomfortable.  I like to sleep on my right side.  A left leg break prevents that.  I would doze through the night, eventually and be awake by 6am to go to the Fracture clinic.

Even though  I had a cast put on my the ER doc, it was temporary.  The Fracture clinic would asses and put on the 'real' cast.  Sunday morning at 730am I'm sitting in another wheelchair, waiting my turn to get a new cast.  I guessed it would be better, more rigid and not have that annoying  back-of-the-knee extension that prevent my leg from bending.  Go figure, I was wrong again.

I did get the new rigid cast, only it went up to mid thigh. The reason for a full-leg cast was so the tibia didn't twist.   Originally the doctor assessed me and suggested that I have surgery to implant a metal rod to structurally support the leg.  While I wasn't afraid of the surgery, my chemo, in particular the Avastin treatment, prohibited this activity for at least six weeks.  By which time I might actually begin to heal.  So full length cast was what I was rolled out of the hospital with.   Now to get into the car..

Awkwardness is my current state.  I can get in and out of the car by  careful and slow movements.  The crutches worked a bit better -the rigid cast helped I think.  Negotiating the steps takes time, but I didn't require any assistance.  The bathroom thing is even more awkward.  But I manage.   After the events of the past 24 hours, I finally nap and feel if not refreshed, better.  I deal with life one day at a time.  Today I had a cast. Tomorrow I see my chemo doc to assess my CT scan.  At that time I will ask for a postponement of my chemo, which is to be on the Tuesday.   I'll find out tomorrow.

For now I have to thank my neighbors, Mike and Patty,  and special thanks for Jo for all she's done to care for me with yet another mis-adventure.

Tomorrow I see an Onclogist and hear the results from my latest (17th!) CT scan.  I wonder how wacky my life will become after that.

The Chemo Chronicles - Part XVII

  Tuesday, October 27th, 2015. Chair #8 is where I will be for the next several hours while I receive chemo #5 for this session.  My seventeenth chemo since this whole thing started over five years ago.  Every session is the same, but there are differences.  Those differences are not in the treatment but in the way I handle the treatment.  For the next three days I would endure the process, and despite the occasional uncomfortable aspects, this chemo didn't go too badly.

  The session started around 930am, but I begin the process at home, taking my pre-chemo pills.  Onedesteron is the medication that I'm advised helps with potential nausea during the chemo session.  I take only one, and then Lorezepam, to help with anxiety.   My first session had caused me (and my doctors) some concern as to how I was emotionally managing the process.  I think I'm doing a lot better, but I still take the pill.  Perhaps the next session I'll go without and see how well I cope.  The next set of pills I'll take will be when I'm starting the chemo session:  three Dexamethasone, the so-called "Chrysler" pills, the shape of which has a passing resemblance to the Chrysler logo.  I won't take any more pills during my three days of chemo (save the ones for Arthritis and allergies). 

  Each session I try to  tweak my routine, to find the most comfort during this time.   I had cut down on the pills  post-chemo, as their side effects were, to put it mildly, extremely disruptive to my emotional and physical comfort.  I make sure that my diet during these days are high in fibre, and try to keep hydrated.  The problem with hydration is that for me, water does not taste right, and doesn't quench my thirst. So I supplement my liquid intake with Apple and Orange juice, and Ginger Ale.  Prior to this chemo I was taking RestorOlax to assist the evacuation process.  This session I opted not to use it, relying upon high fibre and a lot of liquids.   This seemed to work, as I didn't suffer the ongoing cramps that sometimes come with using a stool softener.  It's a reality that the type of chemo I'm on causes constipation, so fruit and fibre and water and Activia yogurt are staples during this time.  I seemed to have manged my diet and bowels,  however there remained other side effects.  Sleeping difficulties and bleeding gums are still issues.

While I only spend a few hours in the chemo chair, the treatment continues with the attachment of a 5FU pump, designed to meter chemo medication into me over a 46 hour period.  Essentially for the next two days I am physically bonded to a bottle.  I can't shower with it, and sleeping with it is sometimes awkward.  Sleep however is a problem.  When I arrive home after the initial session I'm tired and drained of energy.  I sometimes rest on the couch, never quite falling asleep.   The problem is that I feel tired but can't sleep.   I've restored to taking sleeping pills, rather than toss and turn for hours.  The first night with the pump is usually the worst for sleep for some reason.

My other concern is bleeding gums after brushing my teeth.  One side of my mouth (left side) is extremely sensitive.  I  resorted to pre-rinsing my brush in hot water to soften the bristles, this helps somewhat.   I would later learn that I should get not only the ultrasoft brushes, but the soft brushes designed for infants.  And I was advised to get a new brush every chemo.  A sink full of blood mixed with toothpaste is not a pleasant sight. 

I've also noticed that sneezing also produces a  bloody residue.  These bleeding issues are attributed to the Avastin medication that I receive during chemo.  Avastin is designed to inhibit the growth of new blood vessels, essentially denying new cancer tumours an energy source.   So basically my side effects this session are not sleeping, and sore gums.

It isn't only medicine that I rely upon during these three-day sessions, it's my desire to keep active, physically and mentally.  I don't go out while wearing the pump, my physical activities are limited due to my sore knee and shin.  But I don't just sit on the couch during this time, I do normal household chores -manly things too, like laundry, cleaning the bathroom, doing dishes.   When I have the mental energy I play chess online.  I dabble with my electronics hobby, and read a lot.  I now have time to read for enjoyment, not just technical documents that seemed to be my only reading material while working.   I'm learning to enjoy my good days.

My three days of chemo are filled with ways to not think about cancer, despite the tug of the pump attached to my chest.  I look forward to the time when it is removed, and Thursday Oct. 29th at 1120am I was at CCAC, ready for the pump disconnect.  Another routine disconnect with a good blood return, and precious little hair yanked from my chest.  And as has been a tradition of late, lunch was at a nearby Arby's. Moderate consumption as opposed to my gluttony of previous times.  This day wasn't simply a pump disconnect day, it was the first time in three days that I was outside, and walking.

I walk like a drunken penguin these days, due to the knee injury I suffered in August and the radiation treatment in June for my leg.  But I'm now walking without a brace and I feel better for it.  With the pump removed the next week would see me recovering from the effects of chemo.   And it would be a wonderful week to be chemo-free!

Chemo-free but not medically free.  On Wednesday November 4th I would have another CT scan.  As always this is a two day event.   And both days involve drinking the RediCat Smoothie.  As mentioned before it's berry flavoured chalk, heavy on the chalk.  I have two bottles of this stuff, one I drink the night before around 9:00PM.   The next morning I won't eat anything  for three hours prior to my appointment.  I bring my second bottle with me for my appointment at noon.  As I register at the Diagnostic imaging desk, I'm informed I need blood work.  Because it's a Wednesday, my last blood work on Monday the week before is not valid.  So off to the lab I go, figuring it will be 15 minutes.  Nope, lots of folks waiting at noon.  Eventually my blood is taken, and I return to the CT waiting area.   I'm informed I can drink my second bottle.  Lukewarm chalk drink serves as lunch.   Now I wait. I wait until the lab results are in and just before 1:00PM I'm called into the CT  prep area where I receive my second needle jab of the day, this time for the IV that will be used to  inject the contrast dye during the scan. 

I've often wondered how many scans I've had, and when the technician first brought out the paperwork and asked if I had a CT scan before, it reminded me to ask her to look up my record.  She took my signed paperwork acknowledging that they can push the contrast dye through me, and returned, informing me that they have a record of 20 scans for me.  At this point I've had 16 CT's, 2 Bone Scans and 2 real-time flouroscopy  (for the IV Port insertions).  This CT will be number 17.  My first CT was in September of 2005 for kidney stone (still the Worst Pain Ever) and all the remaining scans were since 2010.  Today's scan will be like the other 16:  lie on the bed, cover up with a sheet to preserve my modesty as I pull my pants down.  Both arms are extended straight overhead.  The bed slides through scanner, a voice tells me to take a  breath and hold, then as I return back to the starting position I can breathe normally.  The process repeats a couple of times, and shortly I'm told I'm done.  I can now put my pants back on and the IV is removed.  I'll sport a nice bruise on my left arm for the next couple of weeks.  Another scan is done, and I can resume enjoying my day.  Plus I have to carve a pumpkin.

Halloween was a wet and cold affair, 12 kids trick or treating on a Saturday night was the best showing I've had for several years.  This year I built fading RGB LED eyes for my scary vegetable. The following week, my non-chemo week saw  days filled with sunshine,  blue skies and temperatures in the low 70's (F that is).  The nice weather energized or motivate me somewhat. I would create other circuit boards for my hobby of making clocks.  More importantly,  I would get out and ride my bike and walk. The latter activities were both the most tiring and most enjoyable.  I felt almost like my old self again.

There were a number of social  meetups, which I actually find more exhausting than bike riding or other physical activities.  I enjoyed seeing folks from my workplace, and an old friend from University.  I find that I no longer worry about my former workplace, I guess the 600+ folks at the job can get along fine without me, and I'm glad I can accept that.  But they haven't forgotten me, and the last weekend before the next chemo a good friend from work and his son showed up at my house to clean my gutters and rake my lawn of the leaves.  I am continually humbled by the friendships I've made from my work (and other) places over the years.  I can truly say I'm lucky.

My fifth chemo was remarkably boring in terms of side effects.  I was able to take charge of my post-chemo recovery in a strong fashion, able to do basically whatever I felt like doing.  While my stamina and strength has never returned to the state I was in 6 months ago, I feel like I'm gaining a bit more  stamina and strength.  Walking is clearly in my future.  One more day at a time.

The Chemo Chronicles - Part XVI

  I dream of walking.  In my dreams I'm taking my long strides, cadence in time to the music I'm listening to on my Walkman.  In these dreams I have energy, the sun is shining and the air is crisp.  Then I wake up and, creakily roll out of bed and half stagger, half hobble to the bathroom.  My dreams are so much better than reality.

  Reality is that I have my fourth chemo of this second session on Tuesday October 13 at 8:30am.  The day after Canadian Thanksgiving.   As the Monday will be a holiday, it presumes that the blood work lab at the Cancer Centre won't be open.  It wasn't, and the previous time I was told by the lab techs that I couldn't go on Friday.  This meant I would have arrive sometime around 7am to get my blood work done on a Tuesday morning.  So I went Friday instead.  This is kosher as I had actually discussed this with my Oncologist the week prior during our assessment visit.  Since my blood work -so far- has been relatively good, I had his consent to do a sedate Friday visit instead of a crazy Tuesday morning mad rush with all sorts of anxious patients wanting to get their sessions started as well.

  My Friday visit was sedate, as expected.  Maybe 15 minutes, most of it spent talking to an IT tech working on a label printer for the lab.  I've used the same printers at work, and they're not my favourite devices.  I did offer him the name of a local service company that are expert in those device, and he seemed grateful for the information.   I'm so glad I don't have to work with those label printer anymore!

  After blood work was the new tradition of coffee at a bakery.  The bakery is  a local   fixture, famous for it's breads and desserts.  The decor is step back to the 70's with the lunch-counter seating.  The coffee is good, the desserts are better.  The aroma is the best part, I wish I could hang out there all day.  I would if they had wifi...

  Tuesday morning, the beginning of Chemo #4 starts with the pill regimen.  In addition to the usual ones I pop every morning, there's the chemo pill and the anti-anxiety pill.  Perhaps I don't need the latter pill anymore, but take it anyway.  Morning shower means morning shave, and I strive to make sure there's no chest hair around the port.   My efforts will, as usual, prove to be in vain, but that's not to worry about until my pump is removed.   As this chemo starts at 830am, we're on our way to the Cancer Centre.

  Routine will be the watchword for this chemo.  Arrive at the Cancer Centre on-time.  Announce my arrival to the staff in the chemo suites.  Get my blue-and-white wrist band with my name and other information on it.  Wait.  Called in.  Seated at the chair.   While the nurse is preparing the miles of tubes and  IV bags, I glance at the paperwork from the lab.  My blood work with the magic numbers are on it. Sitting in Chemo Chair #7, I read some of the vital stats:

WBC 4.1, RBC 4.07 L, HGB 131, PLT 121.  White Blood Count, Red Blood count, Hemoglobin, Platelets.   The  RBC is marked L for Low, but it's not so bad to compromise my health.   They are in line with the previous session, so I suppose I'm holding my own.

 Before the port is attached my blood pressure and temperature are taken:
  BP: 138/87,  temp: 36C.  I think my BP is high but am assured it's OK.   All preliminaries complete, the port area is swabbed, and inserted.  I'm off and dripping...

 I'm given three more pills, and I got one shot during this session.  I felt fine, and as is my newest trend, started playing online chess  ('chemoterapy_now' at chess.com.  Apparently I misspelled the name but hey it's unique, like me. )  Perhaps because of the  pastime of playing chess, or the early start hour, my session seemed to end quickly.  By 1230pm this tuckered terr was hobbling his way down the stairs (I refuse to use the elevator) ready to go home.  And once at home it was couch time.

  I don't feel too bad, this first day on the pump.  I figured with the early start and my general tiredness I'd get to sleep early.  I figured wrong.

I try to go to sleep around 1100pm-midnight.  Drowsy after reading in bed, should be time to sleep, right?  Lights out.  Sleep won't come.  Five  AM I'm tossing and turning.  I must have dozed off shortly afterwards, as my alarm woke me at 630am.  I was completely soaked in sweat, something that also happened the first night of chemo during my previous session.  I hope this side effect doesn't continue.  I eventually drift back into sleep, the body conceding that my lights-out decision 8 hours earlier was the correct one.  To avoid this tomorrow night, I resolve to take a sleeping pill.

My second 5FU pump day went as they usually do, not wholly bad.  I believed I felt a bit better, which concerned me:  I check the level of the 5FU pump.  It's ironic that if you feel too good, then somethings not working.  But the chemo balloon is slowly shrinking, so the pump is working.  I'm still housebound, I don't go out during the three days of chemo, partly because I don't want to be with groups of people, partly because I still tire easily.  The lack of consistent exercise is something I need to address in the coming weeks.  However I occupy my day, I confirm my pump disconnect time (1020am tomorrow, the earlier the better in my opinion).  I work on some small projects, and as has been my preoccupation of late, play bad 5 minute ("blitz") chess.  It helps to pass the time and I don't think too much of  how my future will play out.  It's not the end result that worries me, but how I get there that depresses me.  I'd rather play bad online chess.

I've only taken the RestorOlax once this session, on my first day of chemo.  I want to avoid a repeat of last time,  where  I seemed to be in close orbit around the washroom.  I've also noted that while I'm having lots of calories, lots of fibre, I'm simply not drinking enough water.  After the 5FU pump is removed I noticed I was distinctly crampy for days.  More water and yogurt helped remedy that problem.  The actual problem is that water doesn't taste refreshing at all during chemo.  I try some juices,Apple and Orange are OK, but strawberry banana isn't.

Unlike drinking, eating hasn't proved to be a problem during chemo. I find that while I still have cravings, I am eating my usual fare.   I do find I don't need to eat much, portion control seems built-in for me during chemo.  This isn't helped by the generousity of friends who show up at my doorstep with pies.  Can't turn down a pie.  Food aside, sleep is still a concern.  My second night with the pump and I decide to take a sleeping pill.  It helped somewhat. I would wake up the next morning,if not refreshed, but excited that my pump would be off early Thursday morning.

Thursday is always the important day for my 3 day chemo fun fest, as it's the day my 5FU pump is removed.  Removal of the pump means I've finished another session, it means no worries about sleeping and rolling over the bottle.  Most importantly, it means I can finally take a shower!  Bathing is  tricky business with a pump attached to your chest.  For one thing, you can't get your port wet.  And where exactly do you place the bottle -can't be in the tub.  Suffice to say that freedom from the pump is a good thing.   My freedom arrived shortly before 1030 this time.  In a few days I would begin to feel better, I hoped.

Even with the pump removed, I found that I had some small but significant issues afterwards.  The amount of RestorOLax and lack of hydration over the last three days left me crampy.   The only solution was drink lots of water, and keep drinking.  I find that Activia yogurt helps restore me to my normal rhythms. However it was my gums that caused me the most distress this time around.

For whatever reason, brushing is a very ginger affair.   I already use an ultrasoft toothbrush, but the bristles still jab my gums.  And I bleed.  It's disconcerting to think that brushing your teeth can fill your sink with blood.  The trick I've learned is run hot water over the bristles first, as this helps soften them.   The other is to brush very lightly.  We're not sanding the finish off an oak table, no force is required.

I would later learn from one of my nurses that I should use a soft toothbrush that are used for very young children, and discard the brushes after every chemo session.  For now I continue to be very cautious about brushing.   Other than those small issues, I felt fine.  In fact on the Friday after my pump disconnect, I did something I hadn't done in a long time:   Make a PCB!

Friday night for whatever reason I felt I had energy to work on my electronics projects.  Particularly I like to build small clocks, and these small clocks are soldered together on a home made printed circuit board (PCB). 

PIC digital clock PCB x4

Now I've made dozens of PCB's, and my usual method is to use the Toner Transfer Technique.  Simply put, you print an image via a laser printer and iron it onto a piece of copper board.   Easier said than done, as I had not made anything for the past ten months.   I spent a good four hours with this project, most of it in my basement workshop.  I was exhausted, but happy.  There's something about creating, about accomplishing a goal that brings comfort to me.  Eventually these will be clocks, but that's for another  day.

I would build on this electronics hobby over the next week, enthusiastically working on, you guessed it, more clocks.

DS1307 + Arduino Pro Mini

This binge of electronics building helps me with my day to day activities. But the best was yet to come:  warm October weather.

Ojibway Fall colours by the pond

 With me free of the pump I was able to get outside and enjoy the Fall colours.  I could walk, albeit slowly with my penguin-like gait.  I rode my bike.  I walked some more.  Walking is  my freedom.   Since August I've used a knee brace for my right knee.  This week I've discontinued using the brace, and have found some small ability to walk with a normal stride, albeit slowly and hugely energy draining.  I simply have no stamina.  However we walk to the local Tim's coffee shop, where I can rest before we return home.  Those days when I was able to walk  even short distances made a huge difference in my sleeping patterns - I slept well through the night, without the aid of pills.  Walking is great, I want to do MORE!

My week off the pump before my next chemo was my best so far since I started in September.  I found I had some initiative to do things I used to do, and more importantly, the strength to get out of the house and enjoy life.  In a few days I'll do chemo #5 (or 17, depending when we start counting).  Until then I can enjoy life, one day at a time.

The Chemo Chronicles - Part XV

  My chemo schedule is every second Tuesday.  I require blood work prior, to make sure that I'm not getting too sick.   So on the Friday before my third chemo I went to get this chore over with.  However I was informed by the lab staff that I was way too early.  It seems that they prefer a 72 hour window, and felt that my results would be invalid at this point.  With nothing else to do I left.  Monday I was back again, waiting my turn and fulfilling my obligation as well as a couple of test tubes of my blood.  If there were any concerns with the results of these tests, I'd find out tomorrow, the morning of next chemo.

  Tuesday morning Sept. 29th and my morning routine starts.   Pills, for the arthritis. Pills, for the allergies.  Pills, for the chemo.  Breakfast is a whole bunch of Fibre1 cereal and fruits. Washed down with glasses of water.   Before I leave the house, one more pill -to keep me calm and help me manage my emotions during this treatment.  Arriving at the Cancer Centre I walk up the the stairs to the chemotherapy lounge.   Despite the brace on my right knee, I walk better up stairs than on level ground.  I let the staff at the chemo suite  know I've arrived.  A band with my patient ID and other information is loosely wrapped around my wrist.  Back to the lounge for more waiting.  Eventually my  name is called, and I hobble as best as I can to the room where I'll spend the next few hours getting chemically whacked..  My  nurse confirms my name and date of birth as I'm being brought into the suite, and I'm assigned to a chair.

 The Lorezapam must be working, I feel pretty calm as my nurse preps my IVPort for the start of treatment.  As part of my usual preparation I've shaved a substantial amount of chest hair around the IV port area. The area is swabbed with what I assume is a disinfectant.  The moment of truth begins with a brief pinprick, and  session number three begins.   More pills, I'm given three Decadron  to help control any nausea symptoms. That and a shot later that morning to make sure I don't suffer a repeat of my first chemo.

  I always feel fine the first hour or so.  I get comfortable, set up my laptop go online and send a few emails.  Lately I've taken to playing 5 minute online chess games with people around the world.  My game sucks, but it helps pass the time.    My energy and concentration are dropping the longer the session runs.   It's now  noon and what I call  "chemo lethargy" is setting in.  There's no desire for me to do anything but close my eyes at this point.  Yet there is a nice surprise for me this time:  one of my pharmacy friends stops by to see how I'm doing. Thoughtful as always, she has a nice card with words of courage within.  She and I have had similar experiences, and while our paths diverge, it's always comforting to share with someone else who's gone through this experience.  The words are not hollow sentiment, but a source of strength.

    Shortly after 2PM my session is finished.  I leave with my 5FU pump attached and carrying an extra roll of tape -my nurse was concerned that enough chest hair was being covered.  I'm too tired to care, I just want to go home

  First day with the 5FU pump is not too bad, I eat when I feel hungry, but have to force myself to drink liquids.  Water doesn't seem as refreshing and never quenches my thirst during this time.  This week I'm trying various juice boxes to introduce some variety.  Apple juice tastes funny, but it's still better than the Banana Strawberry concoction, too sweet for my taste.  In general during  chemo I prefer the tart or acidic foods, something soft to munch versus crunchy.  A noticeable side effect that continues even when the pump is removed are that my gums are very tender.  Even my ultrasoft toothbrush, gingerly applied, leaves me spitting blood into the sink.  So my new trick is to first rinse the brush in hot water, making it softer and pliable.  This help.  I sporadically gargle that old standby:  saltwater and baking soda, although my dental hygienist wonders at how effective that is.  I should inquire with my dentist for chemo-safe mouthwashes, as the typical over-the-counter mouthwashes and rinses are contra-indicated.  I don't experience any nausea, but my stomach feels unsettled, a nervousness that's not placated by eating or drinking.  I chalk this up to the 5FU side effect.

  Fortunately no other major side effects seem to pop up this round.  My goal now is to endure the next 46 hours until the pump is removed, and see how quickly I recover.  I do confess that my recovery is longer than it once was.  Back in 2010 I could almost guarantee being 'my old self' with 24 hours of the pump removal.   However it's five years on, and my other physical ailments -the arthritis and knee problems, seem to conspire in keeping my physical activity to a minimum.  This time I seem to have managed the side effects better, even with limited exercise -too cold this time to go bike riding, but next week promises to be the best that Fall can offer.  For now I endure.

  And the first night home with the pump I find I can't fall asleep at night.  When I first arrived at home I took a nap, I was tired.  Rested on the couch all day. Then when it's time for bed 11PM turns into 1AM, and then turns into 5AM. I still can't sleep. I resolve to take a sleeping pill if this happens again.


 I basically drift through my second 5FU pump day, playing bad online chess, trying to read up on my electronics hobby.  Things that used to hold my attention seem to require far more cerebral effort than I can muster.  There's a lot of channel flipping, fortunately, there's a whack of DVD and YouTube entertainment.  But I really don't want to be a couch potato, I want to do something.  Later that night around 11PM I take my sleeping pill. We'll see how well I sleep tonight.

 Third day of the chemo regimen, and I've noticed I slept for approximately 6 hours.  While not refreshed as I had hoped, it was uninterrupted sleep.  And today I have a scheduled disconnect time of 11AM, the earlier the better in my opinion.  Aside from the sleep, this chemo has been calm, no serious side effects save the difficulty sleeping.  The ResoroLax and Fibre1 are doing what they need to do, and as I would find out, it would keep working for several days after I stopped taking the RestoroLax.  Something to keep in mind if you are planning to go out.

 I get my 5FU pump removed by the CCAC nurses, who are trained in the art of Chemo-Fu.  This explains their ninja-like appearance when they remove the pump:  mask, goggles, double gloves, and the gown.  I get a piece of paper strategically placed under the port so drops can't splash on my bare skin.  And as always, the CCAC nurses have to gingerly remove the miles of tape that keeps the pump attached to my chest via those few remaining bits of chest hair.  I should be used to having it ripped off by now, but it still hurts.  I'm such a wimp.


Pump free before noon, and I am hungry.    We go to Arby's and I'm craving a Beef 'n Cheddar with curly fries.  Probably not the most nutritious  meal for a colon cancer patient, but I want to satisfy the cravings.   Takes two Beef 'n Cheddars for that, and that's about 1.5 of a B&C too much.  Through the days of the pump it's fibre this, and fibre that.  Sometimes I just want to satisfy the cravings, feel like my old self, forget that I have cancer.

The weather is getting marginally better through the week, and my non-chemo days looks promising.  I'm able to get out of the house, enjoy the things like sipping my coffee by the river, going for short bike rides, and of course, visiting more doctors.

My recovery week has two appointments with my Oncologists.  One is with the Radiation guy, the other with the Chemo guy.  Both are located in the same facility, and both have me scheduled on different day.  The chemo guys is first, and he's basically saying that if the CT shows the chemo is working, I can get more chemo.  Yay.  Perhaps I can arrange a break so it's not every two weeks.  The most important part of the conversation was that it's my quality of life, my choice of what and when to take treatment.  We don't discuss time lines, as it's futile to think about it at this stage.

My radiation guy was next.  Essentially he's satisfied that the treatment to control the metastasis in my left leg worked -I'm not experiencing horrible leg pain and no fractures.   If the CT I'm going to have in a few months shows anything else, I'm sure I'll hear about it.  In the meantime he's discharging me, leaving my primary care with the chemo doc.  One less doctor works for me.   They all treat me pretty well, but I'd rather have one point of contact for my treatment.

It takes me several days to recover, careful of what I eat, as the RestorOLax seems to be working overtime.  I'm not drinking enough water these days.  I find that I don't have the energy or stamina for many activities, and some cramping whenever I eat.  Those effects take days to go away.  Gradually things begin to taste as they should.  I still sleep no more than 4 or five hours, but at last I can rest.   Perhaps it's the Avastin's workings, as I seem to bleed easier. The sink is bloody  when I brush.  Sneezing often produces bloody tissues. 

Despite these annoyances I survive, I try to do more than endure.  And in two weeks, I'll do this again.

The Chemo Chronicles - Part XIV

   Tuesday September 15 was the second round of chemo, or the 14th if you count from when I first started in 2010.  My return to chemotherapy two weeks prior was probably the hardest session I've ever had in my life, and caused me to seriously question my choice of treatment.  With guidance from my doctors, support from my family and friends, I decided to focus on what I did wrong and attempt to correct my past mistakes.

  To start with, my Oncologist addressed my apprehension about returning to chemo.  For this I was prescribed a mild relaxant.  Slip it under my tongue before leaving for my session and it would calm me down.   Then there was my diet - I concentrated on a high-fibre  diet (a gift from a friend in a similar situation was a box of Fibre1 cereal).  More fruits and vegetables. More water.  Exercising, despite my poor ability to walk was also a goal.  I would bike more, and another friend would loan me her step-through bike so I would not strain my still-sore right knee.    But the biggest change was one of acceptance, that this indeed would be my new life, that I am the one that needs to adapt if I am to continue my journey.

   So far that morning I had eaten breakfast, taken my pre-chemo meds, and was so far not feeling anxious or sick.  Already this was better than the previous time.  My visit this time would see me remain in my chair, without any severe nausea.   Uneventful for the most part, I sat patiently and watched as the various IV bags were changed.  I still have Avastin as part of my therapy, and that alone added an hour to the process.   My session had started roughly around 10:00AM, and I was finally ready to leave by 3:30PM, with my 5FU pump firmly attached and swathes of tape to hold it on.  Apparently no matter how much of my chest hair I shave, it wouldn't be enough to escape the grasping, clinging tape.

  I'm listless and lack any sort of energy or ambition by the time I arrive at home.  However there's the feeling of satisfaction for this round, I didn't get sick, I don't feel emotionally overwhelmed.  I still have two and half days to go before the 5FU pump is removed, then several days afterwards to recover.  I hope I recover quicker.  These sessions are similar to my previous ones five years ago, but not exactly the same.  Five years ago I could walk without pain.  This time I hobble and simply have no strength for all but the simplest activities.

  As such, my activities consist mostly of being on the Internet, playing truly bad chess online, trying to figure out bits and pieces of electronics for my hobby.  But I don't have the ability to concentrate very well.  I'm tired and still don't sleep very long.  Even so  this sleep is better than last time.  Previously I couldn't rest without feeling agitated, exhausted and unable to determine if I had actually slept.  Part of that was my decision to not take some of the chemo meds supplied.  Some side effects were jitteriness and constipation.   This session, with the help of an aid called RestorLax I was able to manage my process much better.    A higher fibre diet and more liquids helped.   I was cautiously optimistic that I would fare better this session after only one day.   For a change, I would be right in my assumption.

  However not all was perfect.  Usually I receive a call by the next day of my therapy as to when to report to the CCAC  office for my 5FU pump disconnect.   On a hunch I called the CCAC office, and they had not received any paperwork informing them of this action.  I then proceeded to call the Cancer Center, informing them of this oversight.  Late that afternoon I received my call with  an appointment time for the next day.  I was managing my condition.

  Further management meant taking  my arthritis medication -a pill and an ointment- so that my knees wouldn't cause me so much grief.  It's all about finding comfort in an uncomfortable situation.   Since I wasn't feeling any nausea and was eating fairly well, I opted to not take some of the chemo pills that had side effects of jitteriness and constipation.   Note that this chemo causes constipation regardless, so management of this situation is important.  However there would be other side effects, noticeable once the pump and was disconnected.

  The disconnect happened Thursday afternoon.  This will be slightly different, as I am to be part of a training session.  My nurses are garbed in mask, gown and double-gloved.  I have a mask and sterile cloth on my chest to protect my skin.  I wait patiently as a good guinea pig should.   As always the key to this process is something called a 'good blood return'. Basically blood is pulled out via the IVPort and pushed back in, demonstrating that the port is still functional.  I leave the clinic free of the pump.  There's now a shower in my future.  Two chemo sessions down, four more to go.   A CT would awaits me at the end of the sixth session to evaluate my condition and see if this treatment is  working.  But I don't look  that far ahead anymore, my horizon is today and tomorrow.

  With the pump now removed I would slowly regain some of my energy.  I rode my bike when I felt I had the stamina.   Rides of 20 minutes or less would be the norm, sometimes more, sometimes less.  The duration was mostly dictated by my right knee.  While my normal activities slowly returned, another chemo side effect presented itself:  hair loss.

  During my first bouts of chemo back in 2010 I had experienced some minor hair loss.   At that time I went for a haircut to 'thin out the herd', and that seemed effective.  My hair didn't seem to fall out, but didn't really grow either.  This time my hair was falling out in rather large amounts.  The bathtub after a shower looked as if a fur carpet had exploded.   There was hair everywhere.   Time for drastic measures.  This haircut saw me with the shortest cut I've had since I was ten years old and my dad still cut my hair.

 

   So five days after this latest session I'm pump free, and apparently hair-free as well.  As the week progressed I felt better.  Days were spent just trying to enjoy life -bike ride, sitting at the river watching the ships, working on small projects.   There would be another doctor' appointment, this one with a specialist to look at my right knee.  

  Compared to my last session this one was infinitely better.  I may not be able to walk worth a damn for now, but my journey continues.

 

The Chemo Chronicles - Part XIII

   My only therapeutic option to mitigate the growing cancer in my left lung is chemotherapy, and it's strictly palliative.  I would receive the same treatment that I first had back in May of 2010.  Veteran of a dozen chemo sessions, I knew it would be hard but had the confidence that I would  manage as I always did.   That confidence would soon be broken, my emotional armour completely destroyed.  I would question my decision to choose this treatment path, and, bitterly wonder if any of this was worth it.

   That first day of September I had woken up early.  I ate my usual breakfast of cereal, banana and blueberries.   But something was not right  Within an hour, before I had even left the house I was throwing up.  This was the harbinger of my day to come.

  I arrive at the Cancer Centre by 8:30am, shaky but feeling braver than I should have.   The chemo room is as I remembered it.  My nurse brings me to my chair -Number 7, must be a lucky chair I think.  Preliminaries consist of going over the procedure, asking me questions from the ESAS survey.  My scores for anxiety were concerning  my nurse.  But the process continued, and soon I found my shirt open, my chest being swabbed,  and the moment of truth:  with the nurse telling me to breathe out, the needle was pushed into my port.  My thirteenth chemotherapy had formally started.

 I was feeling OK, figuring the rest was just like before:  get my computer out, sit back, wait for the pump, go home and rest.   Every assumption I made from then on for the rest of the week would be wrong.   It began with the anti-nausea meds.

  I was given a pill to take that would help settle my stomach and thwart nausea.   At the advice of my nurse, a preventative shot was also administered.  Then another.  As the hours grew I found I was cold, and asked for a blanket.  My nurse put a cold cloth on my forehead.   I was chilled and sniffling.  That I was going to get sick was now inevitable.  I told my nurse what was going to happen, and rather than scaring the patients by using the styrofoam cup at my lap, he helped me to the washroom.   There I  threw up for the second time that day.   It took a while before  I finally emerged, weak and shaky.   Instead of going back to the chair however I was guided to a bed.  For the first time ever, I was now in a room and given a bed to lie upon.  Clearly my chemo was going badly.

  But my ordeal was only beginning.  Several nurses would check on me, discussing my nausea concerns.   I  still felt sick.  Once more my shaky legs -I'm wearing a knee brace for a torn lateral meniscus -  help me guide my attached IV pole to go back to the washroom, where I expunge the yellow bile that the chemo has put into my stomach.   I return to my bed,  but seeing the concern on the faces of the nurses tells me I'm in bad shape.   Drastic measures -I'm put on a Gravol IV drip, and finally my nausea passes.  Drowsiness causes my eyes to close.  I rest, and I feel better.  Ironically that would be the best rest I would have  for the remainder of the week.

  Because  this was the first of a new round of chemotherapy, I was prescribed Avastin, to inhibit the growth of new blood vessels.  Basically this cuts the supply routes for tumours.  It's given in declining doses per session.  As this is my first round, I had a 90 minute infusion of this drug.   The last part of my treatment would be the attachment of the 5FU pump.  I had brought my carrier with me -I had kept it all these years.  Putting it on for the first time  was somewhat bemusing, as the waist size was still set from my last session five years ago.  I needed to let it out somewhat for today.   With the pump on me, and three more bottles of medication to bring home, I was ready to leave.   I had arrived at 8:30am, and by the time I left the Cancer Center is was nearly 3:15pm.  It was a long day.  And it would only get longer.

  I would wear the 5FU pump for 46 hours.  In theory it gets installed Tuesday, and Thursday afternoon it's removed.  All I have to do is endure.   For the first day, I was tired and listless, but couldn't really sleep.  Only later that night would I find out how elusive sleep, and more importantly, rest, really was.   I couldn't get comfortable, a side effect of the chemo was  that every two hours I needed to use the bathroom.   But due to my bad knees  it was painful to hobble to the bathroom, using a cane.   At time's I'd  resort to  crutches.   Despite air conditioning it was hot.  The entire region was under a heat alert for days,  the humidity and heat cruelly confining me indoors for nearly the entire week.  But the lack of sleep was more than fatiguing - I couldn't tell if I was sleeping or having waking dreams.  The dreams were always agitated, disturbing and exceedingly exhausting.  The only other time I've experienced this was when I was under major anaesthetic for my past surgeries.  I was getting scared that I couldn't cope.

  I was exhausted.  And it got worse.  I was restless, in pain from my knees.  There was no position of comfort -on the bed, couch, chair.  Desperate for any kind of comfort I tried sleeping on the floor with quilts and blankets to relieve the pressure on my knee.   Nothing worked for long.   I would get up through the night, trying to rest on one of the two couches, before eventually returning to bed.   It wouldn't be until Labour day the following Monday before I felt I was getting actual rest.  My eating was driven by random cravings -a necatarine here, maybe some cereal.  Some soups were appetizing, others simply turned my stomach.  For a small period I would lie in bed,  craving a simple ham sandwich.

 Tired, jittery, exhausted and in pain it was thus no surprise that my emotions were raw and brittle.   I would find myself crying during those long nights of pain and sleeplessness, frustrated by the inability to do simple things -walk, sleep, eat.  The pain in my knees exacerbated my emotional pain.  My  despair grew worse.  And then when I thought I was  bad, it managed to get even worse.   My most despised chemo side effect manifested itself:  constipation.

 It might seem amusing, but this chemo is diabolical.  First it siphons away your appetite, then causes intense pain while attempting to relieve your bowels.   Because I was getting up to go the washroom every two hours, it was natural to try to find some relief.  Only relief never came, just exhaustion and pain.  The effects intensify even after my 5FU pump was removed Thursday.   I don't remember details, just the gradual resignation that everything was hopeless.  My despair grew, and my stock of hope evaporated.  I seriously questioned my choice to take on this treatment.  I just wanted to be done with chemo, done with cancer, done with life.

In my past chemo, the turning point was usually when the 5FU pump was removed  Thursday afternoon sitting in the exam room, waiting for the nurse to remove the pump, I prayed  I would soon feel better.   My CCAC nurse  evaluated my state and was concerned at how I was faring.   For the only time I can recall, I was nearly sick again as the pump was disconnected.   The profound feeling of helplessness was now pervading my every thought.    That Thursday I thought I would be better in 24 hours, after all that's what I remembered.  But that was five years ago, and my body simply wasn't up to the task.

Thursday night started the two worst days of my ordeal.  Post chemo, post 5FU pump, I should be recovering.  Instead I'm shaky, jittery.  My sleep has left me exhausted, I cry at the smallest things  My knee pain causes me so much discomfort that simply rolling over in bed is agony.   I am depressed and despair that I'll ever feel comfortable.  And through the next two days the discomfort from constipation grows.   Fibre is key, water is key, patience is key.  I can bring the first two into play, but I have no patience, no energy.   It's a struggle to drag myself out of bed multiple times through the night to try to find relief.   I'm just so tired, so damn emotional.  I am bitterly  angry at cancer for doing this to me.  Not for the last time I seriously doubted my decision to engage in chemo.  

For the first time in my life I'm saddened by the fact that I don't want to go on:   With treatment.  With suffering.  With life.   Why do I have to endure this?  Where is the so-called quality of life?   I  am unable to think rationally anymore.   I badly need rest and I am scared.  I can't sleep.  I just want  this journey to be over.  I want to give up.

Saturday, and  a small glimmers of hope appear.   My constipation battle is passing, so to speak, with help from stool softeners.  My knee pain and sleep issues are still with me, and my appetite is returning   I  force myself get some exercise.   I can't walk,  but we  have a small utilitarian exercise bike in our basement.  I ride it for five minutes.   Later I ride  for 20 minutes.   I have no stamina.  My knee isn't adversely affected.   Then an amazing resource comes to my assistance:   one of my brothers has driven four hours to visit me this afternoon.

I rarely see my siblings, and given my current emotional state it was absolutely what I needed right then.  We discussed in detail my emotional tribulations, and the core of my fears.   When he left several hours later I was, if not calm, at least had a plan for the coming week.  That plan would include meeting with my Oncologist to discuss my treatment and determine if it could be moderated to lessen the effects.   Plus I figured out why my knees were bugging me:   I had stopped taking my pain killers the day of chemo and never resumed them.  Saturday night I would take one pill and was rewarded with, if not deep sleep, then a less pain-filled sleep.

I struggle to find  my way back from those despair-filled depths of the previous week.   By Tuesday -a week after chemo- I would feel somewhat rested but still not sleeping regularly.  I ride my mountain bike, short distances, simply to be outside and get real exercise.   I would  relearn that I only have to enjoy my time now, when I feel good.    I schedule an appointment with my  Oncologist before my next treatment to discuss options and alternatives.   I had drifted through my first treatment without conviction that there would be any benefit.   I need a plan that it will make a difference, else I'm just wasting time.

By September 10th  I've managed my day-to-day life better.  It's only taken nine days, twice as long as it once did.  Pain medication seems to help my  sleeping.   And I eat a lot of fibre.   For the first time in months I worked on one of my small electronics projects.  Am I getting better?  Only time will tell.   I have completed one chemo session, there are five more  to go before an assessment will be done on how effective this treatment is.  I hope I have the strength to see this through.

So my plan is simply this:  continue with my treatment.   Try to eat healthier.  Find a way to manage my knee pain.  Bike ride when I can.  Prepare for the inevitable chemo side effects.  Finally, learn to ask for help before I'm so overwhelmed that I feel there aren't any options left.  There are always options, perhaps not ones we want to make, but ones that we can control.

Quilts and Kindness

  Last year in 2014 I underwent surgery for a recurrence of colon cancer.  In 2015  I was diagnosed with an inoperable metastasis in my lung.  Yet there is another link between these two events:  Quilts.

  From a dear coworker in 2014  I received a beautiful, hand-made quilt from Victoria's Quilts of Canada.  Comfort for the body, comfort for the soul and I was truly touched when she presented me with this gift.  The quilt is beautifully  hand-made,  then donated to cancer patients.  The organization only asks for whatever a sponsor donates.  From humble beginnings, this organization now distributes around 500 quilts per months.  This quilt quickly became my favourite 'comfort blanket' whenever there is a chill in the air, or if the Winter nights became too cool.  I love my quilt.

  So it was quite  surprise for me this Spring  after my most recent diagnosis when a package arrived at my house.  Inside was another Victoria's Quilt.   While looking at the enclosed note I found  it exceedingly difficult to read, for the first thing I read was the name of the sponsor:  my next door neighbor.  To say I was emotionally overwhelmed would be an understatement, these days the tears freely flow for any act of kindness.  I now have two lovely Victoria's Quilts, both of which will be used, and both which will always remind me that kindness can vanquish fear.

 I don't know how to express my thanks for those where compassion knows no bounds.  It has been my privilege over the years to be a recipient over so many of these extraordinary acts.  During my ordeal I've experienced wonder at how simple acts of compassion can help ease this weary journey of mine.   The path I walk is for me alone, but lining the way are the outstretched hands of those who willingly help me when I stumble.

The Radiation Chronicles: Fifth treatment

Friday June 26th and another beautiful sunny summer morning heralded my fifth, and hopefully last, radiation treatment.   My previous nights pain and emotion had remarkably dissipated, no doubt due to the rest achieved with the help of Tylenol-3's.  I was certainly in a better frame of mind, and wanted this process to be over as quickly as possible. So once more I'm in the waiting room outside the treatment area, when my name is called.  It's time for my last treatment

This time my session  has  a novelty -- I will be part of a teaching exercise.  For the past several weeks a young student has been both observing and working with the regular staff on my particular treatment.  I had first encountered this student during my CT mapping process some two weeks prior.  She was also present at several of my treatments this week.  Today she would be going solo, and I would be her victim patient.

Although the staff knows me by sight, they have always adhered to the formalities:  Ask the patient their date of birth.  Confirm that the treatment is for a specific condition.   Ask if the patient has any questions.  For a brief instant my mischievous side wanted to throw out a flippant answer to see how she responds, but wisely thought better of it.   She worked efficiently and methodically, dotting all the i's and crossing all the t's.  She situated my leg for its final treatment and retreated to the control room with her two proctors.  Ten minutes later we both had reason to smile:  my treatment was complete and the earnest young student had successfully completed her training exercise.

Now it was  reward time.  I presented the box of chocolates I had brought with me as a token of thanks to the student, with a suggestion to share with her coworkers.   Big smiles on everyone's face as I left the Radiation Therapy department, hopefully for the last time.  For me it is important to let those caring for me know how much I appreciate their dedication and efforts.  Little things, like a smile, a kind word of thanks, or even a box of chocolates lets people know you are grateful.

In the weeks to come my leg would feel better, and sometimes worse. There was improvement, but I suspect the damage is done.  Gone are my days of being able to walk for hours without efforts.  Now I walk with a limp, but my journey still continues.

The Radiation Chronicles IV: Crash

   Yesterday I was in an out of my treatment in record time.   Everything seemed to be going great for me.   Today I'm having my fourth treatment and already my left leg is experiencing significant pain.  It's a painful throbbing that just won't go away.  No repositioning of the leg was comfortable for long.   My sleep the previous night was constantly interrupted by my incessant moving and leg irritation.  I woke up before dawn, exhausted.   I hoped I would be able to remain still for my treatment.

   Mercifully this treatment, like the day prior, was brief.   As I walked out of the treatment room through the Cancer Clinic I recalled the words of my Radiation Oncologist and nurse just two days before:  that the pain would increase as the treatment took effect.  It appears they were correct.

  After treatment it was normal for me to return to work.  I had a miserable day because of my leg.  The pain never went away, never subsided.  No position standing or sitting was comfortable.  Ibuprofen, which up to now had relieved my pain, simply had no effect.  By 4:00PM,  exhausted and with little accomplished at  work, I gave up and left for home.  My only goal now was to fill my prescription that the Oncologist had given me on Tuesday.  I hoped it would be enough.

  I rode my bike from work to home.  Formerly biking was an activity that I enjoyed because it was relatively pain free.  Cruelly my disease was claiming even this cherished activity from me.  My ride home was short, less than ten minutes, but I was crying by the time I arrived at my house, worn out by the battle raging in my shin. Yet I still needed my prescription filled.   The tears I could brush away, the pain I endured as best as I could.  I  would ride another ten minutes to the pharmacy and submit my prescription.   While the pharmacist filled my prescription, I sat nearby, letting the tears flow, head down, wondering if my days would remain like this. My name is being called, my pharmacist has my prescription ready.  As I pay my share of it, the pharmacist comments that I don't get a lot of pain meds.

 I leave the pharmacy but need to make one more stop. I had forgotten to pick up something for my techs at the Cancer Clinic.  A small token to show that we patients are grateful for the care and quality of treatment administered.   Finally I arrive home, and my pain meds - Tylenol-3's - advised 1-2 tablets every few hours as needed.  I start with one for now.

 This pain is nowhere near as acute as what I felt when I had kidney stones some years back.   Yet it was enough to exhaust me physically and drain all my energies.  As I lay on the couch, the pill gradually took effect, dulling my perception enough that I could fall into an exhausted sleep that my body and mind so desperately needed.  The meds were working.

The Radiation Chronicles: Treatment Three-Fastest. Treatment. Ever

   It's a sunny June morning, with the rich blue sky that has no hint of humidity.  The day is more Spring than Summer, and should truly be enjoyed.  I however am inside a cancer clinic waiting area, ready for my third round of radiation treatment.  Before I can even get my Samsung media player online, a friendly tech is calling my name.  Treatment is about to start.

  By now I have an established routine before getting on the table:   I divest my pockets of all items:  keys, wallet, electronic devices and loose change.  My shoes are off and my left sock is removed.  Once that task is accomplished, I can lay on the table, where my feet are placed into the plastic holders.  The pillows prop up my head, but my legs being slightly raised cause some aches in the back of my knees.   One of the techs was  with me on my first treatment on Monday and remembers me.  I feel embarrassed as I never quite remember any of their names.

  Positioning my leg went remarkably fast.  Even the process of treatment seemed to go quick.  I supposed I might have been daydreaming, as my sense of time passing simply wasn't registering. It seemed like only moments from when the techs departed the room to returning again.  I felt good and perhaps because the fine weather,  there was an optimism that I hadn't had for a long while.  I decided I should treat myself to a little reward.

  Steimar Bakery is  a local institution, know for fine breads and superb  pastries.   My return to work would see us stop there for a treat.  I felt so good I even ordered a coffee, something I had almost never had in the past year. Blueberry Danish and coffee.  Sunshine and blue skies. The aroma of freshly-baked bread.   The richness of this experience was not simply because I have cancer, but that I took the time to appreciate the moment for what it was -something I simply enjoyed for it's own sake. 

  Today I was in good spirits, my treatment is half over, and things seemed to be going great.   That would change by tomorrow,  as I would experience a complete 180 degree reversal of emotions. 

The Radiation Chronices: Second Treatment

     All my treatments save today's ( Tuesday June 23rd), were scheduled for  8:30AM.  Because I was to meet with my Radiation Oncologist, this  treatment was scheduled for 1:30PM.   Which was extremely fortunate, as I would have missed it if was earlier.

   Monday had been an energy-expending day for me, and I crashed that night into an exhausted sleep.  So tired was I that the thunderstorm that rolled through before dawn didn't wake me.  It did however interrupt the power, and that caused my clock radio to reset.  Which allowed me to sleep in.  It wasn't until nearly 9:00AM that I awoke.  Since all my appointments that week save today's were for 8:30AM, I guess I was fortunate for the later treatment time.

  Having reset my alarm clock I was able to attend my next treatment in a somewhat more leisurely manner.  As I was no longer a "Treatment Newby", my registration at the Radiation Registration desk was perfunctory, and I wandered down to the assigned Patient Waiting Room.  I know what to expect now, so I'm pretty comfortable with the process.  Today however I have different techs than last time, and it was interesting to see how they approached the set up for aligning my leg for treatment.

  There was a bit more jockeying of my leg to position it 'just so', and the longer they fiddled with the setup, the more the back of knees ached.  I guess I should stretch before I do this next time.  Once the techs are satisfied they return to the safety of the control room behind me and the treatment commences.  Once more the table raises, and the treatment machine  does it's eerie slow-motion traversal around my leg.  I have this fleeting vision that I've seen this on an X-files episode before.  Hopefully it's not a repressed memory!

 As before, the process completion is indicated by the return of the techs, and the lowering of the table back to 'ground zero'.  As it seems to happen more often, my getting up from a prone position on my back involves a bit of gymnastic maneuvering and the occasional assistance from a friendly tech.  My second treatment is over,  and back  I go to the Radiation Reception desk.  Where I wait for my follow-up appointment with the oncologist.

 It wasn't a very long wait, and I'm brought into the exam room.  My nurse is going over her checklist and asking if I have any concerns or symptoms.  So far nothing other than my sore leg which I've attributed to over-exertion from my "walking" attempts yesterday.  The nurse exits, and the doctor enters, almost like a tag-team match.

 Basically they're seeing if my leg, in particular the skin, is having any irritation or other reactions.  I could expect a light sunburn effect in the next few days, or possibly some other irritation.  But the main concern is my level of pain.  Both the doctor and nurse have expressed concern that if I'm having pain to let them know immediately.   Although I'm hesitant to become reliant on drugs, there's simply no value in suffering.   Stoicism is overrated.  So I have  a prescription for Tylenol-3, and I resolve that I wouldn't fill the prescription until I needed them.  If I knew what was going to happen in two more days I would have filled it immediately after leaving the Hospital!

  However the doctor doesn't see any immediate issues with my leg, and won't need to follow up with me until October.  Unless there's a problem, then I am to notify the Cancer Center immediately.  

  I'm feeling pretty confident about the treatment right now, and while it's not letting me walk in my usual way, the amount of distress seems to be getting less.  Time will tell, and with only three more treatments remaining, I am told I will expect significant relief.   Tomorrow I resume my 8:30AM appointment times.  Hope I don't sleep in!

The Radiation Chronicles

     For one week in June my blog will be known as the 'Radiation Chronicles' to reflect the treatment I would be receiving.  Treatment prescribed for the likely metastasis in my left shin.  Because of the chronic pain, I couldn't sleep, I couldn't walk, and I couldn't concentrate.  My personal and work life were suffering.  Pain was now defining my life.  Radiation offered hope to relieve that pain.

    I had my initial consult with my Radiation Oncologist on Thursday June 11th.   The day after I would undergo a CT simulation which would identify the extent of the radiation treatment.  After finishing the approximately one  hour mapping process, I was handed a green appointment card.  My first treatment would start on Monday.

     Sunday night and I'm not sleeping. My left leg is throbbing, the only position that brings any sort of relief is when I'm  lying prone on my stomach, left leg stretched straight.  I don't care that it's in my bones, I just want to sleep.

     I arrive at the Cancer Centre well before my appointment time, going directly to the Radiation Registration desk just as they told me to last Friday.  I present my green appointment card.  The receptionist smiles and comments that I'm a "treatment newby".  As I've never received radiation treatment before, the receptionist guides me to the waiting area for Radiation Therapy.  I've never been in this part of the Cancer Centre.   It seems empty, quieter than where I received chemo.   Another patient arrives.  He is older, and we exchange  muted greetings.  I wasn't up to conversation, but my companion was undeterred.  However his one-sided conversation was marked by the anger he had towards his disease and how it changed his life.  I could only wonder if I would feel similarly in the future.

    My co-patient was soon called in for his treatment.   Minutes later, a smiling young tech calls my name and leads me to the treatment room.   A second tech joins us, and as this was my first treatment they took great care in making me feel comfortable.   Patiently they explained that the procedure would be painless and wouldn't take long.  My only job would be to simply lie still during the course of treatment.  I could do that I thought.  First first step was removing my shoes and the sock on my left foot.  I had the forethought to wear shorts, so I didn't have remove my pants.  No one needs to see that.   Next I had to lie down on the table, and  my feet were placed into plastic rests that slightly raised my heels off of the table.   I was given a pillow for my head, and somewhat tentatively I asked for a second.  I like my head propped up a  bit, and the techs obliged my simple request.  I was surprised by their next request: would  I be more comfortable if they strapped me  onto the table?   It turns out that part of the process involves the table lifting to a height of approximately five feet!

     The finicky part of the process was the alignment of my leg.   The dots tattooed on my leg last Friday were used for this part.   Satisfied that the stars, or at least my leg, was in alignment, the techs left the room to begin the process.   Now the table I'm on is raised.  I watch as the  Varian radiation therapy machine slowly rotates around my leg.  This machine is a large and imposing device, moving with  a precision I find reassuring.  I understand now why the table is raised:  so the machine can deliver  it's treatment from any angle. During my treatment there will be  X-rays to ensure that the alignment is correct before the radiation is actually delivered.   My only  feeling during this time is the ache in my knees as I try to keep perfectly still.  Perhaps because this is my first experience, the time seemed to pass slowly.    Random thoughts:  what if I have to sneeze, would they stop the procedure?  I would later find out that if I was to sneeze  then do so, just don't move, especially your arms.  Fortunately during my treatment I never had to put that action to the test.

     I realized the treatment was completed when the technicians return. My table was slowly lowered, and I have to be patient not to try to sit up too quickly.  I had come through my first treatment without incident.    With four more treatments remaining, I wondered how long it would be before I felt any improvement.

    The rest of the day, perhaps feeling a confidence that I didn't really have, I walked, or rather, limped, a lot.   The efforts I put forth attempting to walk "normally"  would prove too much.  That night exhaustion caught up with me, despite the pain in my shin.  Tomorrow  I would receive my second treatment, and interestingly,  meet with the Radiation Oncologist for a follow up.

Lung Biopsy

    On June 18th, 2015 I had my first, and likely my last, lung biopsy.   The reason for this procedure was to obtain samples of the mass in my lungs and lymph nodes.  By having these samples analyzed, it can be determined exactly what type of cancer I have.  This means a day surgery procedure, and, more importantly, the joy of experiencing another tube inserted into another orifice.

   As a veteran of several day surgery procedures, I know the process well:  show up early at the Hospital and register at the Admitting department.  Take your paperwork up the Day Surgery floor, and wait for your name to be called .  So that's what I did on June 18th, arriving about 40 minutes early for my 1PM appointment.   I waited patiently until I was seen by the clerk, discovering only then that I was pre-registered.   My paperwork was already waiting at the Day Surgery site on the fourth floor.   

   Upon arriving on the Day Surgery floor, I confirmed my appointment and was  asked to take a seat, being informed that I would be seen shortly.  Good thing I had done all that 'practice waiting' earlier today.   Soon enough a nurse arrives to bring in me into the preparation room.  It's cold and I'm expecting the usual process of having to disrobe entirely and change into a hospital gown.  While I would eventually wear the "Johnny Shirt",  I would be able to keep everything on but my shoes and shirt.  I was thankful for this, as it was cold in the room.  My problematic left leg hurt as I'm not comfortable laying on my back.  The nurse is looking at my hand, seeking a suitable vein for the IV.   I have good hands for that apparently, yet the first shot misses.  Second attempt is higher in my arm, near the crook of my elbow.   I prefer that anyways.  This attempt succeeds.  I will wear the usual souvenir bandages and tape when I leave.   More waiting, then my nurse is replaced by the anesthesiologist.

  The nice anesthesiologist patiently explains the process of what they need to do to me.  This consists of numbing my tongue, throat, mouth and voice box.  I will receive a 'twilight sedation' via the IV, and will likely be conscious during the procedure.  What she didn't tell me is that the administration of the anesthesia is accomplished by dabbing the above-mentioned parts with  an anesthesia-soaked swab on the end of a stick.   The first part began easily enough, with an Ativan pill placed under my tongue.  Once that was dissolved, the anesthesia application began in earnest.

   My job is to open my mouth and stick out my tongue.  Repeatedly.  Initial applications are easy, the mouth and tongue are swabbed, and you are encouraged to swallow, as this will help numb your throat.  Things get a bit more challenging the further down your throat, and that's where the gag reflex kicks in.  You never actually choke, it's a natural reflex that most of us can't (or won't) override.  I was able to test my gag reflex several times during this process.   Each time I'd gag, my anesthetist told me what a great job I was doing, and waited for me to regain my composure.  I would take another breath, open my mouth and stick out my tongue.  We repeated this activity numerous times, and yes, it did get easier, mostly because she stopped doing it.

 I don't recall if I felt particular numb, but the doctor and staff were satisfied I was ready.   By now I've got numerous EKG monitoring wires stuck on my chest; those will be fun to remove.  I was repeatedly asked if I was on blood thinners or aspirin.  I was also asked if I had any allergies.  Next I was given a bite guard, so I wouldn't chomp down on the scope tube that would be threaded down my throat.  Finally  my eyes were covered up, and the procedure began.

   A  sensation of something moving down my throat was my only indication that the tube was being inserted.  This feeling only lasted for a few moments however.   I wouldn't remember when it was removed,  yet I believed I was conscious during most of the procedure.  I would hear conversations, the occasional "he needs more...".  I can't talk, but I can make hand gestures:  thumbs up or down if needed.  There wasn't anything requiring my input, and I tried to drift off.  Rather, I hoped I'd drift off, I hadn't been sleeping well for a very long time, and was hoping I'd be right out.  No such luck.  My time sense of course wasn't very accurate, I can't tell how long the procedure lasted.  It didn't seem very long.  More importantly, I didn't feel a thing.

  I'm aware that the procedure is done, and things have gone well.  My bed and I are moved back to a recovery room.  I feel fine.  I'll be observed for about an hour, and then my gag reflex will be tested.  They way they do this is have you sip some water.  If you can drink without gagging, it's a good thing.   Those initial sips were quickly followed by substantially more water; I hadn't had anything to eat or drink in over 12 hours now, and I was thirsty!

  Upon discharge I was reminded that there might be some coughed-up blood and a raw feeling in my throat.  Fortunately none of these symptoms presented, and over the next few hours I was able to eat and drink without concern.   Now all I had to do was wait  another 11 days for the results.  Of course as I was getting dressed I discovered the leftover EKG sensors stuck on me like leeches.  Pulling each sensor off also yanked a fair bit of body hair with it.  The most painful process of this whole thing always seems to come down to tape and hair.

 My biopsy results would be read to me on the 29th, eleven days from my procedure date.  I didn't feel worried about the biopsy results, I know I have cancer.  I just wanted to be comfortable.  When I saw the Lung doc, it was rather anticlimactic.  Our conversation lasted about five minutes, where he confirmed I had cancer and that it was derived from the instance in my colon.   Upon leaving his office, the  doctor told me he was glad to have met me, and for some reason, that made me feel sad.   At home that night I dutifully informed my friends and family about the results.  It seems that everyone  wants to believe that there's a microscopic chance that the biopsy would show something else.  I feel like I'm letting them all down when there's no good news.

  It's getting difficult to keep emotions in check, to keep motivated, to want to live my life in my usual fashion.  I know that this feeling will eventually fade and I'll adopt a new perspective.  It's slowly dawning on me that I don't have to maintain an air of strength for myself or others.  I just have to be strong enough to do what I want, when I want.  Finding ways to be comfortable and happy are hard enough when you're healthy, so when you're sick, you should simply enjoy those peaceful and happy times as you can.