Tuesday, July 26, 2016

Catching up

I had planned to write about the sequence of events for the remainder of March, and of course all of April.  Now it will also include May and a bit of June , as I'm a tad behind in blog writing.  Basically I saw the Bone doc, the Oncologist Doc, an ER doc and an Orthopedic surgeon.  Because in the last week of May, I broke my right leg.

For several months I had been contemplating resuming chemo therapy.   This was contingent upon my regaining the strength in my left leg and actually walking.   That was the plan for the early part of April.   April came and went, my mid-evening crying bouts were getting routine.  I was simply getting tireder and weaker with each passing day.   My other options would strictly be palliative with the goal of minimizing pain.  I made my thoughts know to my  Oncologist that I would likely rely upon his office for pain management. Initially this would consist of two strings of pills to do the 'long acting' control comprising 18 mg, a 75mg nerve pain control, a 10 mg 24 hour anti-depressant, and finally various supplements for Arthritis and Laxatives.  The entire regimen complemented by a 2 mg pill for 'breakthrough pain ("fast acting"?).  That was the plan in April.

 By May my patient care was transitioned from the Cancer Centre to the Hospice of Windsor.  I had a new doctor that would oversee all my pain care management. I also had acquired a new social worker from the Hospice, who was willing to do house calls.   I felt that it was necessary to minimize my migration from point A to point B, not sure why I felt that, but it's one that seems to be working for me.  With all the new medical partners in place, I felt that I could start enjoying the sunny days of warm weather.  Of course I could enjoy them, but no one said they would last.  And in the last week of May, I skillfully demonstrated How Not To Enjoy Summer by breaking my right femur.  I reengaged my pain battle with a new level that saw both my legs declared non-weight bearing, and a serious decision needed to be be made:  I could no longer take care of myself on my own, and would would require daily assistance.  Therefore I found myself within a long-term care facility after entering the hospital and surgery was performed on my right leg.  This surgery would involve a  metal rod inserted to help heal the bones together.  The nature of the surgery was technically easy, but my age, the extent of my cancer throughout my bones, all made the side effects more profound, and not for the first time had I wished that I had not woken up from the procedure.  Recovery would take weeks, and would leave me incredibly weak, bedridden and unable to to do anything for myself.  I lost all sense of appetite and had little appreciation for life. How many more setbacks must be endured before I would encounter peace?

I would be in Hospital for slightly under two weeks when a room opened up at a long term care care facility, and I was moved there.  Room #32_30 would now be my home for the duration of my stay. 


With Sadness...

It is with sadness to say that Terry past away on June 27, 2016 in his sleep.    After fighting the courageous battle of cancer for six years, he was not able to do it any longer.   As he wrote the blog, he wanted to help others who would be going through the different tests and chemo/radiation treatments.    Terry was an excellent writer who shared this with others and  also helped him through some very difficult times with his own decreasing health.    Along with the writing, he was able to share his hobbies (making clocks and other blinking electronics) with each of you who read his blog.  " Terry Therapy. "  He was overwhelmed of the support he received from his friends and family.   It did help him quite a bit and a big thank you to all.    Cherished memories  is what Terry made sure we would always have of him. 

Life is not forever, but love is...

Tuesday, May 3, 2016

March -the month of more scans and pains

  These days my calendar is sprinkled with nothing but medically-related appointments.  I start the month of March with a visit to my family doctor for refills of prescriptions, and a B12 shot.  I would continue with a CT scan a few days later.  By now a CT scan is routine for me, and frankly pretty boring.  While the exam took place on Wednesday, March 9th, the preparations started the day before:  drinking the first bottle of RediCat.   Think of the flavour and texture as a sort of chalk smoothie, with a hint of berry.  The second bottle would be brought along to the exam so I could drink it when instructed by a tech.

What made this particular CT different from previous ones was how fatigued I would be, simply crutching from the Hospital entrance to the CT registration.  When I arrived at the front doors of the Hospital, I was offered a wheel chair, but stubborn me felt I could handle it on my own.   I would remember this day on future visits, and when a wheelchair is offered, I say YES!  Eventually I arrived at CT registration, tired, worn out and looking for a place to nap.

Once registered, I was directed to the CT suite and instructed to drink my remaining bottle of RediChalk.  All I wanted to do was just lie down, close my eyes, and rest. Ironically this is exactly what needs to be done during the CT scan itself, albeit with an IV  attached.   This IV's job is to push a liquid that would make my ears and anus warm, and leave me wondering if  I had soiled myself.

Fortunately from previous experience,  I knew those feelings was just that, and I wasn't wetting the bed.  During the CT exam I would be instructed to take  deep breaths,  breathe normally, or simply be informed that the IV push was coming through.  In general there's nothing particularly difficult about a CT Exam

With the test completed and the IV removed, l was free to go home.   Feeling marginally better, I one again eschewed the wheelchair, crutching my way to the outside of the Hospital entrance, and flopping down on a bench, waiting for my ride. With my broken leg (still healing .... ) getting in and out of a vehicle is a challenge.   Getting in and out of my house with its few stairs was now akin to climbing Everest (a very small Everest perhaps).  Suffice to say my landing pad when I finally arrived at the house was crashing on my bed.

It would be March 17th when I saw my oncologist to discuss my results.  Still have that darn cancer chewing away at my bones, still have a slowly healing left tibia.  But a small spark of hope that in a month or so I could be strong enough to resume Chemo.   I felt confident enough to book a Chemo session for the end of April, after all, I felt OK in the leg mobility department.

 Twenty Four hours later that would change, and all my confidence and strength destroyed by one little event. It got worse:  my pain was increasing in my jaw, and my pain management didn't seem to be working.

Halfway through March and I had severely twisted my right knee, formerly the load-bearing leg while my left leg was recovering.  Now it seems I'm literally left without a leg to stand on.

Monday, March 14, 2016

The Radiation Chronicles: VI

  Cancer chew toy, that's what I am these days.   The cancer started in my colon in 2010, and categorized as Stage 4 as it had spread to my liver.  By 2014 it had returned to my colon, and from there spread to my lung.   Not satisfied with soft tissue, it began snacking my left tibia.  However cancer looks at my body like an all-you-can-eat buffet, and in early 2016, it had spread in earnest:  lower left jaw, thoracic and lumbar spine, right hip, right ankle.  Unfortunately cancer has a constant dining companion called Pain, and my quality of life went from miserable to despair.  Then it got worse.

  Despite the drama implied above, the pain and symptoms did not happen overnight.   Months prior to my most recent radiation treatment I had noticed a numbness in my chin.  Additionally a loose tooth from that same time frame  went on to become a  'highly mobile' tooth that required immediate extraction.   The extracted tooth would be biopsied and show cancer in my jaw.  The extent of the bone cancer showed clearly in a subsequent bone scan.  My treatment, as it has been over the past year, is of a palliative nature:  control my pain to give me some enjoyment of life.   That treatment would take the form of a single large-dose of radiation, and that happened on Tuesday, February 18th, 2016.

  Prior to my actual procedure was something called a CT mapping.  A special CT scanner determines the extent of the cancer in the bone.  Because it would target my lower left jaw, it was imperative that the beam be precisely 'on target'.  The easiest way is to immobilize the target so it won't move.  Translation:  lock my head down.   During the CT mapping a plastic mesh mask is created to precisely place my head into the same position for my return visit.  Millimeters can make a difference.   The mask will prevent me from overtly moving during treatment.  It's a bit unnerving as the mask, while mesh, is so very tight.  Furthermore, this mask will be bolted to the table during the treatment.

With the mapping over I waited for my appointment for the actual procedure. During this time my lower left jaw was getting worse.   Ongoing numbness in my chin made me feel like I had a fat lip.  Drinking liquids would sometimes result in dribbles down my chin.  Headaches on my left side of my head grew progressively worse.  I would find that even at night, laying on my left side, the pillow would put too much pressure on  my face.  Sleeping was uncomfortable and broken, even with the sleeping pills.   By far the worst aspect was the emotional one, as every time I brushed my teeth I would look into my mouth and see the raw effects of cancer directly working on my body.  Gums were enlarged, splitting away from the tooth at acute angles. My teeth were being forced out of alignment by the actions of the cancer.   A careless slip of my toothbrush would result in a sink full of blood.  My despair grew as I waited.  A momentary pain, no matter what the source, would cause me to lose control and I would spend the next hour crying.   Tylenol-3's were being taken as often as safely recommended, but they were proving inadequate.  Finally I received an appointment for my treatment, and it was with a mixture of relief and fear that I brought with me that day.

There were no special requirements on the day of treatment, but I made sure I took a Lorezapam to relax me, and two more Tyelenol-3's to hopefully cope with the pain that would accompany me lying on my back.  They almost worked.  From previous experience with radiation on my leg, I figured I knew what was going to happen next, and I was mostly right.   I would have two treatments this session, one for the jaw, the other for my lower back.  The jaw was first, which meant my plastic mesh mask and I would be inseparable for the next few minutes.

 Getting comfortable on a flat surface when you have a broken leg, arthritic joints (especially the knees), and soreness in the back is simply on of those things you have to grit your teeth and do.  Only with the restraining mask on me, I couldn't even grit my teeth.  My face and head were in exactly the same position they were in during the CT mapping process the week before.  However this time the mask was secured to  the table.   As a small comfort, a foam support was put under my knees to help my legs and joints.  Finally they were ready to begin.

First part of the treatment is actually an X-ray, to ensure that the area they're treating is indeed the area we want treated.  If there are problems at this stage, my treatment would stop.  Fortunately everything appeared good to the technicians and the radiation treatment proceeded.   They actually position the doses from both the left and right side, in order to evenly distribute the beam across the affected areas.  I had a fleeting vision of me with permanently sunburned cheeks.  Fortunately this scenario did not occur.   Whether due to the combination of meds or my thoughts wandering off into dark outcomes, the treatment seemed to crawl along.  In reality it was only tens of minutes.   Mask removed, I was allowed to recover somewhat.  I needed to sit up, to stretch.  My back during this time had become very uncomfortable.   Yet I would need to return to that uncomfortable position once again, in order to treat that back pain.

I still need to remain in a fixed position during the treatment, but by now my backache was aggravating me more the longer I remained prone.  Similar to  the previous treatment for my jaw, I would have  a single large dose of radiation administered from above and below.  In some cases this might affect bowel or bladder, but my main concern was simply to not move and ignore the pain.   Perhaps because the 'hard part' of treatment while wearing the mask was complete, the back  procedure seemed to go quicker.  In short time I was crutching my way out of the Cancer Clinic, to go home and rest.  All I had to do now was wait for the radiation to do its job over the next few weeks.  What that meant was I had to endure more pain.

By the time the first weekend rolled around after my radiation therapy, I was experiencing daily headaches that left me morose and miserable, unable to concentrate, and unwilling to do any activities.  Evenings or time when I was alone seemed to magnify this effect.  A quick spurt of pain would bring tears, and that would magnify the enormity of my despair:  real crying jags would be the result.   I had no hope within me, and just wanted relief from life.   By Monday I had enough, and contacted the Cancer Centre, telling them I was having difficulty managing my pain.  Within minutes I received  call back:  a prescription for Dilaudid to replace my Tylenol-3's was issued.

  I would take a pill every 4 hours 'as needed'.   By Wednesday I realized that they were not making much, if any, difference.  Another call to the Cancer Centre.   Another prescription.  Basically a 12 hour long-acting version of what I received on Monday was sent to me.   This time there was noticeable relief from my various pains.  By Friday my headaches were under control.  I had an appetite again (sort of).  I was drinking a lot more water.  And my medicine shelf was stocked with a variety of laxatives and stool softeners.  Strong pain medication comes with a price.

  Exactly one week after my radiation treatment, I had an appointment  with  my Dental Surgeon to follow-up with the tooth he had extracted.   He was concerned over the size of the growth of the gum tissue.  To alleviate a possible infection, I was given an antibiotic, along with an antibacterial mouthwash, and a numbing agent that he believed might bring some temporary relief if applied to my gum on the left side. 

  Over the next several weeks there would be some relief, due to the drugs and the radiation treatment.  But I also experienced side effects:  incredibly tired and weak, no appetite and I wanted to do nothing but sleep.  Sometimes I would be sick, shaky arms and tears as I held onto the toilet wondering if my life couldn't get any more miserable.  My days are filled with mindless entertainment on TV and the internet as I wander from couch to the bed.  The nights when I am home alone are the worst.

 Three weeks after my radiation treatment I was scheduled for another CT scan.  I'm so tired of tests, despite how routine they are by now.  But for now the weather is getting warmer, the days are brighter and Spring is on its way.  We'll see what the next CT scan  brings.


Monday, February 22, 2016

Biopsy and Bone Scan

   Friday, January 29th I received a call from my oncologist's office:   I was booked for a Bone Scan on Monday, February 1st.   This was unexpected, and I felt that sinking feeling in the pit of my stomach.   Two weeks prior I had a tooth pulled, and my dental surgeon had sent a sample away for a biopsy.  My suspicion that the two events were related would soon be proved correct.

  Monday February 1st I arrived at the hospital for my third bone scan.   Still using  crutches because I'm wearing a half cast on my left leg.  A knee brace is on my right knee.  I manage to crutch all the way from the hospital entrance to the nuclear medicine department.  My poor health shows in my huffing and puffing.  I feel extremely weak.  Concern for my breathing prompted the techs to give me Oxygen, and I was put on a bed while waiting for my procedure.  My  breathing concerns were conveyed to my oncologist, and I was given an X-ray and blood work.  Fortunately my O2 saturation was 99% and my lungs showed no pneumonia.   I'm just incredibly out of shape after two months of doing nothing more active than sitting on a couch. With the concern for my breathing resolved, I was ready for the bone scan procedure to begin.

 The bone scan is done in two phases:  first an injection of a mild radioactive tracer is given.  A wait of about an hour is required for the tracer material to wander through your system.   You're encouraged to drink a lot of fluids during this time. During the interval between the injection and the actual scanning, I met with my oncologist.  After assuring me that my breathing and oxygen were OK, I was ready to continue with the remainder of my bone scan procedure.

 For approximately one hour I would remain flat on my back while the procedure slowly took place.  Pain was radiating from my lower left hip and back.  All I could do was endure, weary of yet another test that would only result in negative outcomes.   Nearly one hour after the scan commenced it finished, and I was able to finally sit up and massage my aching back.  Exhausted by my morning exertions I would return home, to rest and wait for the results.   My wait wasn't long and the news was what I dreaded to hear:  the cancer had spread.

 In 2010 I was diagnosed with Stage 4 Colon Cancer, with metastases in my liver.   In 2014 it had returned to my colon.  In 2015 it manifested in my left lung, and later in my left shin bone.  Now in 2016 it had rampaged through my body:  my left jaw, lumbar spine, thoracic spine, right hip, and right ankle.  By far the worst was my jaw.  A biopsy performed on my pulled tooth two weeks prior confirmed that it was from colon cancer.  My gums were being split,  and forming ugly growths that cause growing discomfort day by day.   A large single dose of radiation to relieve the discomfort and pain was the proposed remedy.   There is no cure, it's simply about pain control and quality of life now. 

  My pain is two-fold:  physical and emotional.  For the physical I take Tylenol-3's.  For the emotional I have anti-depressants prescribed by my family doctor.  Pills alone do not suffice, I also have counseling from my social worker.  I can't cope on my own, and the reality is I'll never be independent again.

In the days that followed my bone scan I would see my Dental Surgeon, talk with my  Social Worker,  and visit the Fracture clinic.  My leg cast would initially be reduced, allowing me to bend my knee. Later the cast would be removed entirely and I would be fitted with a walking boot.  But my immediate goal is the upcoming radiation treatment for my jaw.  The growing pains in my body are tenuously held at bay by a handful of pills.   It won't hold the pain back for long.

Wednesday, January 20, 2016

Weary of Sadness

 Since November 21, 2015 I've been in a full leg cast due to a broken tibia.  The onset of Winter, the stress of the Christmas Holidays, and a disruptive loose tooth  have led me to the brink of an emotional crash.   I usually detail my experiences, the good and bad in my writing.  This time I simply have no way to express my emotional state given the ongoing  inner turmoil I constantly experience.

I cry nearly every day, for no particular reason.  It might be a sentimental Christmas song,  or maybe a TV commercial with a plea to help the less fortunate.  Certainly the media has pounded the guilt drums long and loud.  My limited mobility and dependency on others reinforces the feeling that I have nothing left to contribute.  Seasonal depression, days of gray seem to mirror what's in my heart.   I want to live, and I don't.   Giving up who I am  to become what I will be is the hardest thing I've done.   And  there is pain from the leg break.

Once upon a time I would stoically endure the minor aches and pains I experience daily.   Now it's just easier to let the tears flow.  The subtle trap is that my emotions run unchecked, decision making is difficult, and concentration is non-existent.  For nearly two  months I've lived like this, hoping that when the cast is removed things will get relatively better for me. 

One thing has gotten better:  I had a tooth pulled on Jan 19th.  After nearly a month of visiting the dentist, being referred to a Dental Surgeon for an Emergency extraction, I got the damn thing removed.  While there's considerable relief from that action, nothing is free in my world.   The dental surgeon has decided to biopsy a sample from the site.  It's likely due to an infection, but at the same time, my history  warrants further investigation.  In two weeks I'll find out the results, and perhaps there will be more tears -hopefully in relief.