Sunday, November 22, 2015

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.




Wednesday, November 11, 2015

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.