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.