The Chemo Chronicles -Part I

    Tuesday, May 11, 2010  I was  sitting in a chemo chair getting psyched up for my first treatment.  My nurse looked at my freshly-installed Port site and frowned.  Another nurse was consulted. Now I had two frowning nurses looking at my chest.   A decision was made not go ahead with  treatment that day as it was felt that my Port was still too tender (it was) and raw (it was warm and sore). Frankly I looked like Hell to them.  So the initial chemo was a wash out and  would be rescheduled for three days later on the Friday.  I was somewhat relieved  as I was feeling stressed sitting there waiting for a decision to be made.

    As I made ready to leave I picked up my trusty, always-with-me backpack. My nurse gave me a look and asked if she could see how heavy the pack was.  Her astonishment at the weight (not that much but...) was followed by a stern warning that I just had surgery for the port and should NOT be shouldering the backpack on the same side!   Sheepishly I switch sides and heard the amusement in her voice as she said "You're going to be trouble aren't you?".  Me? Trouble, nah, I'm a nice guy!

     That night however it all sort of hit me.  I was aching from the previous day's Port surgery, and stressed by the Chemo non-event.  Then I began the "What if..." game.  "What if the chemo doesn't work?" "What if..." well, those questions can only be asked so many times before the tears start.  After that the best and only solution is to sleep. So I did, and it's pretty amazing what 8 hours of real rest can do to one's outlook on life.

     Now better rested after three days,  I was ready to try this Chemo thing again.  So Friday morning (May 14th) at 9:30 I was back in the chair.  I felt strong, my Port didn't feel so uncomfortable and I was confident it would go well.  The initial pin prick to insert the IV wasn't a big deal. I was ready to do this.  Only someone forgot to tell my body what was going to happen to it.

      They had given me a couple of 'anti-nausea' pills prior to inserting the IV into me.  I was prepped and ready for anything.   Except an unexpected and not-at-all delightful experience of inaugurating my first chemo experience by losing my breakfast.   Tossing one's cookies in a public space causes several things to happen:  large styrofoam cups are placed in front of you to contain the spill that would  rival the BP Gulf Oil Well disaster.  Nurses run over to you at lightning speed and curtains are shut to avoid distressing others in the room.  Cold cloths are placed on your neck and you are injected with a drug that dries you up and takes away most of the unpleasantness.   I alternated between chills and hot flashes.   I was miserable.  Throughout it all the nurses calmed me down and reiterated that if  felt I was getting sick to immediately notify them, and the Angel of the Needle would quickly inject me with cosmic relief.  Or something like that.

      Chemotherapy for me consisted of in two parts.  First is the classic sitting in a chair, as the chemo solution drips into you.  Second is the pump.  The pump is a 5FU bottle that also attaches to the chemo port and you wear it for 48 hours after you leave the chemo chair.  Around 1PM that afternoon my first session was done,  and the pump was  attached to my port.  It is a plastic bottle a little smaller than a sports drink bottle.  Inside is a balloon filled with the 5FU chemo solution. It is essentially metered by the compression of the balloon and I think the ambient temperature.  The pump feeds into the IV Port and is securely taped. Care must be taken to support the pump when you move, so it will not dangle precipitously.  Therefore a special pouch can be bought that straps around your waist and the pump is securely contained on it.   However sleeping with the damn thing can sometimes be annoying.  Ok it is annoying, as I kept wondering if it would fall off the bed (it would) or I would roll over and crush it (I didn't).  The picture of me with my chemo bear shows me wearing the 5FU pump on my left side. Chemo bear is wearing his own version.

     So remember how optimistic I was about going through at least the first chemo with minimal impact. Oh how wrong I was.  My spectacular debut performance in the Cancer Clinic was fortunately not repeated that weekend.  I had several anti nausea pills to be taken ever 4 hours or 'as needed'.  I suspect that the primary reason I didn't get sick the rest of the weekend was because I  simply didn't eat.  Absolutely no energy to eat, concentrate or do anything. Even watching tv was a chore. As side effects go it wasn't horrible. There were other effects however.

     One effect which would occur on every subsequent chemo treatment were sore arms and chest after even mild physical exertion.   During my convalescence I took great pride in being able to walk for kilometers or for extended periods of time.  While on chemo, a walk of less than a 100 meters would invariably cause my upper arms around my biceps to get very sore, as if my muscles were being squeezed. Same thing for my chest.   My first thought was that I was going to have a heart attack!  Resting caused the effects to subside.   Note that once I was off the chemo bottle  these effects went away within a day.

     Other side effects would present themselves during the course of the next several months, but I was incredibly fortunate that most were 'annoyances' and not too severe.   Besides side effects there are other things to watch out for during the chemo process.  Your chemo  whacks the hell out of your immune system, making you susceptible to all sorts of other nastiness that your body simply can't handle.  In particular oral hygiene is important as your mouth is affected.   Thrush is a common condition in this circumstance, so naturally I got it.

     Instead of a nice pink tongue Thrush gives you a white somewhat scummy looking one.  This is due to a yeast infection.   Sunday after my chemo bottle was removed I went into Emergency to get it checked out.  Apparently this is not the smartest thing a chemo patient can do!   For one thing you are still immune compromised, and you are in a room full of sick people!   I was advised that I should wear a mask if I needed to visit an ER or public place.  I was examined, the verdict was I had Thrush and I was given a prescription to be filled.

    Off to the local Drugstore, where I presented the Pharmacist with my freshly-written and absolutely illegible prescription.  He dutifully took it, and after a minute or so indicated that this was an over-the-counter drug.  I was given a box, told it had exactly ONE pill. And it was $25.00.  He also told me to "Ignore the writing on the side of the box".  Which of course I didn't, it read: "For Vaginal Yeast Infections".

    The remainder of the first chemo weekend was relatively uneventful.  Slept alot, still wasn't eating much more than soup and took my pills.  Never had a pill regimen in my prior life, so this was yet another new experience for me.  Since this was going to occur every two weeks, I ended up having to  write  a chart for my 'weekend chemo pills'.  Here's how it went:


Friday                     10AM           10PM
         Zofran              X              X 
         Decadron            XXX
         Prochloraparazine  -every 4 hrs for nausea, if needed

Saturday Zofran               X             X
         Decadron             X
         Prochlorparazine

Sunday   Zofran               X             X
         Decadron             X
         Prochlorparazine

Generally each 'X' is one pill.  The day of the chemo I would end up taking 3 of the Decadrons.  Usually I would end up taking the anti-nausea pill only the first day, with no need to take it for the rest of the weekend.  I was very fortunate in this way. I would use this chart to remind me of what I had taken, and when to take it, during my remaining chemo treatments.


    On the advice of my nurses, I would begin to record my temperature on a daily basis to watch out for fever.  My oral hygiene now included rinsing my mouth with baking soda and warm saltwater.  You can't floss as often (or at all) in case you slice up your gums.  Forget any alcohol-based mouth wash too.  Then there was one other little item, more cosmetic than medical, but it would save me some discomfort later on:  shave my chest hair around my  IV Port!.   


      When the chemo bottle is attached to you after your initial treatment, it eventually needs to be removed.   This can only be done by a chemo-certified nurse, located in my case, at a clinic all the way across town.   The procedure itself is a 5FU Pump Disconnect, and you are supplied with a kit to present to the nurse doing the procedure.  What is disconcerting is that she will gown herself up, double gloves, mask and eye protection.  A cloth is also placed over the patient to catch any drops that may spill as the pump is removed.  You realize just how dangerous this stuff is, and you are in the same category as a toxic waste site.   Then you realize that this stuff is going inside you...for the past 48 hours.


     But the real pain/annoyance/dumb thing is the tape.  Pulling that tape off renders your chest shiny smooth, as it's taken all the hair with it.  Important safety tip: shave before chemo!

    My first chemo was over. I had thrown up in the chemo chair. I had lost almost 5lbs.  I  got Thrush.   I had zero energy for the entire weekend.  My arms and chest were in pain if I did any physical exertion (like say, walking).  This was going to make me better?   Only five more treatments to go.

Interlude -Part I

     From February until April of 2010 my focus was on the immediacy of my situation: from  diagnosis, through the tests and finally the surgery.  The first phase was over and I would rest and recuperate, or so I thought.  There was still a matter of removing the staples from my incision,  and then follow-up visits to my surgeon.   While the surgical phase was winding down, my Chemotherapy phase would soon begin. I would use the intervening time to heal physically, and to my realization, rebuild my 'emotional armour'.   Physical, emotional, mental and Spiritual strength are used in various measures to sustain one through this process.

      Although I was 'resting and recuperating', things still needed to be done.  I would get familiar with STD's -yes Short Term Disability forms (what else?).  There was  clothes shopping; my 38" waist pants now hung extremely  loose on me.  A more appropriate 36" waistline suited me much better.   My new daily activity would begin with breakfast and then weigh myself.  For the early part of April I was still under 170lbs, down from the pre-Christmas high of 194lbs I'm  6' 1", so my weight is not bad for me now).  My coffee intake was dramatically reduced, replaced by more water and juices,  more fruits and vegetables.  My diet was undergoing a lot more scrutiny.

     Now an interesting thing happened when people learned I had cancer.  Beyond the  truly overwhelming offers of support and help (infinitely appreciated), there was lots of advice for 'cancer beating' foods.  Oodles of dietary advice, suggestions of supplements, Juices and Berry wonder drinks, alternative medicine, and of course, the Miracle  of Asparagus. 

     For those of you who do not  know of the Cancer-Asparagus  link, it's an old, old internet hoax.   Asparagus is as good for you as any other green vegetable, but it simply has no basis as a miracle cancer cure-all.  Even the online 'testimony' lists the doctor as having a DDS, usually not often associated with the Oncology realm.

      Food matters aside, there was a lot of walking, a lot of napping. As many of my friends know, I wrote a lot of emails (hint: not so many emails in future, more blog entries..). I didn't think too much of the future, mostly because I was following my Cancer Plan.  The plan was set up by my doctors, and provided a path to Cure.  Note that I said cure, because from day one that's what my doctors told me we were going for.   Optimism like that should not be disregarded, having any hope is better than  no hope at all.

     I found ways to keep the optimism going.  I recognized that if I was going to be recuperating from major surgery, then having  really nice Spring weather would not be so bad. I pointed this out to my boss at work, and emphasized  my plan of doing NOTHING all summer long.  I would also use the time somewhat more advantageously to reconnect with my brothers and sister throughout the summer months.  Always try to find a positive amongst the negatives is something I try to do in my daily life.

     While I was trying to live a normal life, do normal Terry-hobby things (like solder helpless IC's) reality intruded.  I met with my Oncologist and discussed ChemoTherapy.  I would receive 6 treatments, one every two weeks.  In order to facilitate this process I would have an IntraVenous Port installed.  This is basically a way to deliver the chemo drugs directly into you without going through an IV in your arm.  This so-called 'Port' would stay in me during my entire treatment.  Installation of this Port would be the most disconcerting day surgery that I had up til then.

     So Monday May 10th at 730am I was at the local hospital. Again.  Another visit to the Day Surgery floor.  More  keen hospital clothing. Another IV. More waiting.  Unlike major surgery, where you walk down to the OR then hop onto a bed, here the Day Surgery patient is given a bed and rolled down to the procedure room. Weird.  In this case my procedure room was in the Radiology department, as they require real-time Fluoroscopy to insert the port. Oh and you have this humongous device about a millimeter from your head.  Also your head is turned to the extreme right, giving me neck strain for the next day (my port was on the Left side,most put it on the right, I just HAVE to be different). But the best part is when you are covered by what I guess is a lead-lined pool tarpaulin.  I was asked if I was claustrophobic. Heck of a time to ask, as I'm basically cocooned in a lead blanket with my head pinned by a radiation-emitting device and chemicals are dripping into my arm.  All I needed to complete this scene would be a sinister bald-headed guy stroking a cat while musing about world domination.

     Ian Fleming references aside, I was quickly asleep and woke up with my brand new (and very very ginger) port in me.  I wouldn't be able to shower for the next 10 days or get the dressing wet. Stitches would need to be removed as well. Oh, and did I mention that Tuesday the 11th was supposed to be my first day of Chemotherapy?

      Surgery. Chemotherapy.  My doctors would provide the technical means, but I had to provide the resolve to see this process to completion.  My foray into Chemotherapy would start less than 24 hours after my IV Port was installed.


 

The Background -Part III

      Awareness returns as the anaesthesia wears off. I had just finished my first major surgery, some three and a half hours of it. I was conscious of voices around me.  I was aware of other more pressing needs however.

     "I have to pee".  Those were my first words I said as I was coming out of the anaesthetic.  "I have to pee", I kept repeating.  Laughter, from my family and the staff.  I heard a nurse chuckling that "All the guys say that!"
And I was cold, I think I communicated that sentiment for shortly afterwards there was a warm blanket over me, and I slept some more. 

     Woke up in room 622A (the one closest to the doorway) Hooked up to an IV pole with my epidural pump, my catheter and odd plastic bags of clear liquids.  For the first few days you cannot drink, you cannot eat.  You've just had a section of your colon cut out!  I could suck on ice chips though.  I believe I was even able to get my trusty little netbook online, although I was not exactly coherent.   I even had to exercise: move my legs, rotate the ankles, stretch and point my toes and if could, COUGH.   The object of this was to prevent blood clots from forming, and to prevent pneumonia from affecting the lungs.  Later I would be dressed in 'compression stockings', and would wear them for the next several days.  I was a fashion statement. But the big event that first day after surgery was being able to sit in a chair!  One cannot rest in a hospital, one must get off one's butt and take an active role in their own recovery.   First step is to get out of bed, and sit in a chair. The nurses were hoping for 15 minutes.  I did for 3 hours. I was pleased.
That was the Friday, the day after my surgery.  Saturday would be the day I tried to walk.

    Surgery techniques evolve, in the old days sutures were  used to close wounds and cuts.  Although still used I suppose, my incision was stapled.  Little metal staples that would not look out of place at a hardware store were firmly embedded in my belly, over which 17 miles of gauze and tape were affixed. The abdominal muscles, were cut after all.  Abdominal muscles are also used in the act of getting up, moving, walking...

    Walking was the goal for that Saturday. With the help of the fabulous nurses (and they are all that and more), I walked down the short distance from my room to the Nursing Station.  I did it twice more, and was exhausted, but pleased.  Later after all my visitors had left I would walk some more.  I was determined to Get Better Fast.  Plus I was hungry.  I still hadn't eaten, still couldn't drink water, but I could now have a popsicle.  Orange popsicles, are, and always will be my favourite!

    More walking on Sunday, I was getting good at this. I was now able to put on my socks and booties by myself. I could disconnect the A/C cord for the IV and manoeuvre  my squeaky IV pole around the various obstacles on the floor. (Patients, beds, nurses, the occasional bewildered visitor).  After racing around like a crazed rodent (and the IV wheels sounding like the squeaky wheel of a hamster cage) it was gently suggested to me that I could go off-floor!  While not true freedom, I had a degree of independence that allowed me to cruise the less-crowed and quieter hospital floors. (Administration is perfect, nothing ever happens there).  At this point it should be noted that my attire consisted of two johnny shirts to preserve my modesty and not scare anyone, some socks and hospital booties.  I was dragging the IV pole with my catheter bag and the epidural pump. And I was blithely walking around the corridors of a large, public institution in this fashion as if it was the most natural thing to do.  I would not suggest trying this at any public shopping mall however.

    That Sunday night my increasing optimism  came crashing down to earth.   The epidural was removed from me.  Remember all that walking? Remember the staples in my belly? Remember the surgery?  All that was brought home to me front and centre once the epidural wore off.  I was in pain, but still not Kidney Stone pain.  I remember being awake until after 3am, asking the nurse for a popsicle, it seemed to ease the fire in my belly, and I slept finally.  The next morning I felt great, no more pain in my belly!  I was recovering.

     I must have recovered enough to warrant a reward, so Monday I was able to have real fluids. Juice! Water. And more popsicles. But the real treat was lunch. I ate food for the first time in six days.  Chicken soup, jello, more juice!  I cried I was so happy to eat.

     There remained just some minor things to accomplish, like passing gas and bowel movements.  To avoid the sensitive types who may be reading, suffice to say that I achieved these milestones and was ready to move on the next phase: solid food.  If I could keep solid food down, I could go home. 

      Skip right to Wednesday, my last day to stay in room 622A.  Lunch was delivered, but disappointingly, it was a 'full fluids', not a 'soft food' lunch. I ate it anyways, and was happy when the 'soft foods' lunch eventually made its way to me.   A Grilled Cheese Sandwich never tasted better, it was the first solid food I had eaten since before my colonscopy, going back to March 23rd.  I was feeling great, things were working, I was sent home that afternoon, staples still in me, but feeling great.  My weight was down to 168lbs.   Just before I left my last dressing change was the 'waterproof' cover over my incision; I could finally shower!  Some things in life, like the taste of a piece of toasted bread, warm water flowing over your body, the touch of someone who cares, can never be taken for granted.  I was overrun with emotion upon leaving, happy yes, glad yes, and relieved that this was done.  I had so much support from my family and friends and coworkers, and I had the compassion and professional care from the medical staff, the nurses who looked after me were awesome.  I would learn that this level of care was not just on one station, one floor, one hospital, but throughout the entire medical community. I know, I have experienced it first hand.

     I would be weeks away from 'normal' activities.  The Chemotherapy treatment would being within the month, and there were procedures to be done before that happened.

The Background -Part II

     My initial foray into the Canadian medical system as an adult consisted of one Kidney stone procedure in 2006 (that has been the most intense pain I've ever felt, and I include my subsequent surgeries for colon cancer in that category. I never want to experience a kidney stone again!)  Prior to the K.S., I had some minor procedures as a kid for tonsillitis and lazy eye.

     After age 9 or so I was reasonably healthy, except for a penchant for coffee and cheetos.  The heartburn I was experiencing in my mid-30's led me to drop a lot of my 'fattier' foods (including cheetos).  I even acquired a vegetable and rice steamer.   My overall diet was probably still high in the starches, but annual visits with my family doctor and a flirtation with  cholesterol-that-was-high-for-a-person-with-family-history helped me to curtail a lot of the snacking. Not completely of course, because I did not want to be responsible for causing the local Tim's coffee shop to close for lack of business.  Plus I was active,  rode my bike a fair amount, and figured I was in reasonably decent shape.

     So to rejoin the story of my Colonscopy results thus far:  I had experienced fatigue and weight loss, the colonscopy showed a major blockage and the pathology report was, as we shall see, not good news.

    March 30th is one of those days that I believed I would never forget, as it was the day I sat down with my surgeon and discussed the findings and the CT results.  Numerous drawings of the colon, arrows pointing to tumour sites, discussions about surgery, medical terms flying around; it was all a blur to me.  The most terrifying part was the build up to the staging:   I was diagnosed as Stage IV.  I was not prepared for this.  I had lost both parents to cancer - for both it was  fast, from diagnosis to passing.  I was sitting on the exam table and felt the hot flush that signals one is about to faint.  I needed to lay down and it was some minutes before I could compose myself again.

     Once I sat back up I started to assimilate some of what my surgeon was saying, but all I knew was that I had a tumour surrounding and choking my colon, that it was in the lymph nodes, that there were tumours on one lobe of my liver.  It was in and through me, and it wasn't good.

     I would be scheduled for surgery for a hemicolectomy April 8th, to remove the tumour on my descending colon.  My last day of work was March 31 2010.  The CT after my colonscopy showed three visible tumours in one lobe of my liver, and I had to go for a chest xray to see if it was in my lungs, but I would not find out the results until the day of my surgery.

     For me the rest of that day was spent on the phone, walking in the local park, talking to my family, friends and employer,  "sharing" the news, such as it was.  I made a decision that day, to do whatever I could to survive.  I  adopted the mantra "I may have a best-before day, but today is not that day".  And I picked an inspirational song, "The Mary Ellen Carter" by the late Stan Rogers.  This song helped a lot during some of those late nights in the hospital.  You can listen to it here: http://www.youtube.com/watch?v=fT-aEcPgkuA

     As my colon was so constricted I was on a strict pureed-food only.  In order to avoid too much weight loss I compensated with high caloric fluids.   DQ and McD's provided much of this in the form of something called a "milkshake".  I was constantly hungry and the cravings were never satisfied. Heck, I even tried puree of fish sticks (ok, it was no worse than puree of anything else...)

     After the visit with my surgeon things moved very fast indeed. I had my Xray the same day as my visit.  I contacted my employer and let them know I would be unavailable for work (they have been very supportive during this entire process for which I am grateful).  I needed to make a Will,  and assign a Power of Attorney. I had to do a Pre-Assessment Clinic, where I was subjected to a number of blood tests, EKG, and I talked to a pharmacist and the anaesthesiologist. Forms were signed, but I was focused on just getting through this process. The week and days  went by in a blur.  In retrospect I think that the short time line was an advantage to me, as I didn't have time to think about the upcoming surgery. 

     Thursday, April 8, 2010 at 08:00AM was the scheduled time for my colon surgery.   I was up at 05:00AM, and registered by 06:00AM.  I had friends and family with me that morning, but when my name was called to begin the pre-operation preparation I felt alone and helpless.  Incredibly the spark of hope was already lurking in a place I never expected: with the nurse reviewing my results and prepping my IV.  I learned from her that my Xray results were good! "Chest unremarkable" I believe is the exact phrase used.  It meant there was no (visible) tumours present in my lungs.  I also found out my weight, and at some 170 pounds I had dropped  some 24 pounds since before Christmas. Not a recommended   method of dieting...

      Pre-operative procedure continued; I actually walked down to the room outside the OR where I was then situated in the bed that would eventually be my vehicle into the OR proper.    Here's what I remember thinking when I was finally in the OR:  the operating table is really really narrow, and it was really really cold in there.  I remember the nurse telling me to hold her hand while the anaestheologist placed the epidural into me.  Then....nothing.  Drugs work fast.

      The next memory I recall is waking up in the recovery room, unable to open my eyes but hearing conversations of the staff and my friends and family around me.  I had successfully come through my first major surgery.  My journey would continue...



  

The Background -Part I

     Terry's Chemo Chronicles is intended as a means of keeping my family, friends, coworkers and others updated with my status as I journey through my battle with Cancer.  This journey began back in February of 2010.

     Before the boring medical stuff, here's some boring stuff about myself.  I was born in 1959, which made the majority of 2010 the year of the big Five-Oh.  My career  of the past 25+ years  is IT; early days of programming in DOS-based environments (Clipper/dbase/C), UNIX/Linux/AIX  system administration, some networking and a whole bunch of general 'computer stuff' til now.   I tended to work some longish hours as is the norm it seems for this industry.

     In the latter part of 2009 and early January 2010 I noticed some weight loss, and fatigue.  The fatigue I attributed to the job.  The weight loss I attributed to my regimen of carrots/celery/almonds/raisins for lunch and fewer sweet treats from the local Tim's coffee shop.  I was completely wrong of course, but my annual physical appointment was scheduled for February, and as my visit just the past year showed nothing abnormal I was not overly concerned.

     As with any physical there is the obligatory blood work.  As with the turning 50 thing, there are a couple of other tests that are routinely performed on males. For the record, the prostate (notice the lack of the letter R ) was not an issue.  What was an issue were the results of my blood report.  My doctor's first question to me was if I was a vegetarian, something that took me completely by surprise.  It turned out that my B12 and Iron were extremely low. More tests to follow.

     One of these tests  I took is also an 'age 50' test, although not bound to just males.  It is the Fecal Occult Blood test, where you get to participate in your own medical testing suite (ok, it's the bathroom).  The shiny foil envelope  with your selected samples is delivered to a local lab, or dropped in the mail, and in a short while you get a call from your doctor.   In my case it was concerning the traces of blood in my samples.  A positive sample like this leads directly to the next age-50 test: the Colonoscopy.

    Much as been written about the Colonoscopy  procedure, and Dave Berry's article about his procedure is the one I suggest every reluctant male (it's always men who are most afraid) should read.  It made me laugh.  My colonoscopy was scheduled for March 26th.  Interesting to note that in the weeks prior to my test there were live tv shows of brave journalists undergoing this process for their audience, the aforementioned Dave Berry article humouously portrayed the process and in general, I was not too concerned.

    March 26th I bravely faced down my fears, and clad in the armour that is standard hospital issue (I got to wear my socks however) I was soon undergoing THE procedure.  Well, I awoke to hear my doctor discussing my situation but I don't remember much. What I thought I heard was 'cancer'.  As awareness reinstated itself, I found that the exam could not be completed due to a constriction in my colon.  It was so small the probe could not get through and there was serious concern that food particles would block the colon. My diet  for the next week and a half would consist of nothing but pureed food. A sample had been taken from me and sent for a pathology report, and on March 30th I would meet with the doctor to discuss my situation.