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.