Thankfully the day is behind me and my stress level is down considerably since last Thursday.
Why last Thursday you might be wondering? That was my pre-chemo appointment to assess my state of health and make sure that my body can actually handle the physical stress of the treatment.
It seems that my blood work, particularly my neutrophils were in the tank! Down to a level of 1.0 whereas the minimum they will accept for chemo is 1.5.
A quick search of the internet confirmed what the chemo MD had already told me- there is little that one can do, either through diet or drugs that will accelerate the white cell count in a period of 3 or 4 days. It would come up somewhat by Monday but it might be touch and go whether it reached the 1.5 cut off.
Matt dropped me off at the LRCP at 7:30, plenty of time to get bloodwork done before the scheduled 8:15 chemo start. I was clearly the first "customer" of the day at the lab and it only took a couple of minutes for what probably was by 5th or 6th blood sample of the month. I'm guessing if I was a car the low oil light might be flashing by now.
And then back to the waiting room for a half hour of anxiety while I read a 1 year old Newsweek discussing the likelihood of a Trump Presidency.
With the clock ticking past 8:30 and no sign of being called, I actually started to relax. I figured that if the tests were not up to snuff they would have called me already. However since they don't prepare the chemo drugs until you are actually in the building and scheduled for treatment, I figured the delay was a good sign and that my results were ok.
As it turned out, I was right. The blood work was well above the prerequisite 1.5 and I was off to the races.
The treatment was a lot shorter this time as they could infuse the drugs at a faster rate due to my lack of complications during the first round. I was actually done everything by noon. A slight headache from the cyclophosphamide means they may have to slow things down slightly next time, but otherwise things are looking rosy!
Not everything is perfect, however. I'm starting to lose my hair. That wouldn't be so bad except it seems to be a random occurrence although the biggest loss happens when I wash my hair. I'm guessing dreadlocks are not an option at this point so I may get Matthew to give me a buzzcut tomorrow. In the meantime, toques and hairnets are my go to fashion accessory just so that I dont have to pick hair out of my teeth after I've made scrambled eggs!
On the plus side, I haven't needed to shave in almost a week so that gives me an extra 10 minutes in bed every morning.
For the next few days I'll be back on a 100mg dose of prednisone daily which means a ravenous appetite and bouts of insomnia. That should be fun. At least they are tapering off the prednisone dose this time so hopefully I wont get the migraines that happened after the first treatment.
With 2 trips to Toronto lined up over the next week for eye appointments I dont see any road trips in my immediate future but my 6 string is back from the repair shop so I'll be able to occupy some of my time on something other than Netflix binges.
Monday, February 27, 2017
L) Day 159 more or less ( Feb 21st)
Tomorrow is another fun day- stent replacement day. Yipeee!! Nothing like feeling like you are pissing broken glass to take your mind off the other mundane details of your life.
But I'm running ahead of myself. Today I finally got my car back after 20 days in the shop.
I always thought that, unlike a timing belt, which can snap, a timing chain was virtually invincible. It seems that under certain circumstances they can get out of sync. and that, apparently, is what mine did.
The original bill was apparently north of $3000 but they discovered a "silent recall" at the same time which ultimately dropped the bill to just over $1200. The silent recall fixed the tapping sound in my engine that I had been complaining about for 3 years-a tapping sound that they initially said didn't actually exist! They later admitted to it's existence but insisted it was a normal sound that would eventually go away. By eventually I presume they meant after the engine seized up and died but, for now the engine is running smoothly and based on current circumstances, might actually outlive me!! LOL
Tomorrow's surgery is at 9am which means it is one of the earlier ones, thus increasing the chances that it will actually be on time. Regardless, I have to be a the hospital at 7:30. The extra 90 minutes is required to prep. you, meaning check your vital signs to make sure you are physically able to survive the procedure. They also find out which is the largest vein in your arm and then they try to insert a slightly larger needle into that vein, being sure to wiggle it just enough to leave a bruise the size of a filet mignon so that you have something else to focus on besides the pain in ying yang!!!!
That whole process takes about 12 minutes so you get to spend the rest of the 78 minutes laying half naked on a gurney with nothing to do besides count the dots in the ceiling tiles and getting anxious any time someone in a white coat comes within 3 feet of you.
At least in Stratford they give you a smock that covers all of your naughty bits, unlike LHSC where they make sure there is at least 2 inches where the ends don't overlap. They do that so they don't have to give the nursing staff a raise. To explain: picture yourself in one of these outfits, walking barefoot to the washroom, pushing your IV pole with one hand while using the other to hold your dignity and your gown together while your ass is, by and large ( and in some cases by and even larger!) as Dylan so famously said-" Blowin' in the wind.
Now picture yourself trying to open the bathroom door with your third hand- what? you don't have one? Exactly! These nurses are so busy laughing through most of their shift that they forgot they haven't had a raise in 5 years
A quick footnote to the above:
The stent surgery turned out to be a lot less painful than the first procedure and my recovery was a lot faster. Dr Hussey suggested that the next time they might consider doing it without actually putting me under- just a heavy sedative instead! And probably if a fourth procedure is required down the road they'll probably give me a can of Solarcaine, a crochet hook and a do it yourself manual. Here's hoping not!!!!!!
But I'm running ahead of myself. Today I finally got my car back after 20 days in the shop.
I always thought that, unlike a timing belt, which can snap, a timing chain was virtually invincible. It seems that under certain circumstances they can get out of sync. and that, apparently, is what mine did.
The original bill was apparently north of $3000 but they discovered a "silent recall" at the same time which ultimately dropped the bill to just over $1200. The silent recall fixed the tapping sound in my engine that I had been complaining about for 3 years-a tapping sound that they initially said didn't actually exist! They later admitted to it's existence but insisted it was a normal sound that would eventually go away. By eventually I presume they meant after the engine seized up and died but, for now the engine is running smoothly and based on current circumstances, might actually outlive me!! LOL
Tomorrow's surgery is at 9am which means it is one of the earlier ones, thus increasing the chances that it will actually be on time. Regardless, I have to be a the hospital at 7:30. The extra 90 minutes is required to prep. you, meaning check your vital signs to make sure you are physically able to survive the procedure. They also find out which is the largest vein in your arm and then they try to insert a slightly larger needle into that vein, being sure to wiggle it just enough to leave a bruise the size of a filet mignon so that you have something else to focus on besides the pain in ying yang!!!!
That whole process takes about 12 minutes so you get to spend the rest of the 78 minutes laying half naked on a gurney with nothing to do besides count the dots in the ceiling tiles and getting anxious any time someone in a white coat comes within 3 feet of you.
At least in Stratford they give you a smock that covers all of your naughty bits, unlike LHSC where they make sure there is at least 2 inches where the ends don't overlap. They do that so they don't have to give the nursing staff a raise. To explain: picture yourself in one of these outfits, walking barefoot to the washroom, pushing your IV pole with one hand while using the other to hold your dignity and your gown together while your ass is, by and large ( and in some cases by and even larger!) as Dylan so famously said-" Blowin' in the wind.
Now picture yourself trying to open the bathroom door with your third hand- what? you don't have one? Exactly! These nurses are so busy laughing through most of their shift that they forgot they haven't had a raise in 5 years
A quick footnote to the above:
The stent surgery turned out to be a lot less painful than the first procedure and my recovery was a lot faster. Dr Hussey suggested that the next time they might consider doing it without actually putting me under- just a heavy sedative instead! And probably if a fourth procedure is required down the road they'll probably give me a can of Solarcaine, a crochet hook and a do it yourself manual. Here's hoping not!!!!!!
Wednesday, February 22, 2017
K) Day 162 - not a one off
After 4 days of headaches, my first migraine is definitely not a one off!!!
Now comes the tricky part of figuring out why!
Perhaps my chemo MD might have an answer but my appointment is a good week away. Luckily the Maxalt works relatively quickly so I only actually suffer for an hour before the pain is relieved. Thank God for small miracles!.
My Montreal trip has been replaced with a few days in Toronto. The weather has improved significantly and it is nice to be able to go out with just a sweater rather than bundled up in a parka, scarf and gloves. Chinese food once again will be the norm for the next few days.
Now comes the tricky part of figuring out why!
Perhaps my chemo MD might have an answer but my appointment is a good week away. Luckily the Maxalt works relatively quickly so I only actually suffer for an hour before the pain is relieved. Thank God for small miracles!.
My Montreal trip has been replaced with a few days in Toronto. The weather has improved significantly and it is nice to be able to go out with just a sweater rather than bundled up in a parka, scarf and gloves. Chinese food once again will be the norm for the next few days.
J- Day 165.
Today marks 7 weeks since the "big reveal" and as often happens, I'm awake at 4am with nothing to do but think.
Stuart McLean of Vinyl Cafe died yesterday at 68, the result of treatment failure following his diagnosis with Melanoma in late 2015.
I wonder if the comedians who take the piss out of his laid back style will drop that from their act, or does death mean no holds barred? I guess we'll have to wait for the next Laugh out Loud to see!
My original plan for this week was a few days in Montreal. Yes, I know, it's a shitty week to go there and the weather will be crap but the place seems to be a hot bed for Chinese Dumpling joints and Steak Frites so I gotta eat there!
My first serious migraine in umpteen years put the kibosh on that plan as I lay in bed with the sensation of someone digging my right eye out with a soup spoon!!!!
With all my migraine meds expired for years, it took some time for Susanna to track down my MD and get him to issue a new prescription. Whether this little episode is just a single out of the blue or if it relates to my therapy remains to be seen.
Suffice to say, the maxalt (headache medication) worked within an hour so I was able to function for the balance of the day. I don't imagine anyone was too impressed with my social skills. Just slightly down off my prednisone 'lost weekend' I was already feeling a little grumpy so the arrival of the migraine turned my " little grumpy" into one of those flip sides from the Snickers commercials.
My earlier experiences with migraines rarely lasted beyond 8 hours but they would drag along a mood of depression that would last well through the next day. I probably ticked off a whole lotta people the next day after every headache. ( I Imagine there are 2 or 3 hundred people out in the world right now pumping their fist and yelling "Damn straight, you asshole!!"
I only once ever connected my fist with anyone's face and that was over a migraine , So folks who've only known me in my last 5 migraine free years, you missed the other guy!!! LOL
Stuart McLean of Vinyl Cafe died yesterday at 68, the result of treatment failure following his diagnosis with Melanoma in late 2015.
I wonder if the comedians who take the piss out of his laid back style will drop that from their act, or does death mean no holds barred? I guess we'll have to wait for the next Laugh out Loud to see!
My original plan for this week was a few days in Montreal. Yes, I know, it's a shitty week to go there and the weather will be crap but the place seems to be a hot bed for Chinese Dumpling joints and Steak Frites so I gotta eat there!
My first serious migraine in umpteen years put the kibosh on that plan as I lay in bed with the sensation of someone digging my right eye out with a soup spoon!!!!
With all my migraine meds expired for years, it took some time for Susanna to track down my MD and get him to issue a new prescription. Whether this little episode is just a single out of the blue or if it relates to my therapy remains to be seen.
Suffice to say, the maxalt (headache medication) worked within an hour so I was able to function for the balance of the day. I don't imagine anyone was too impressed with my social skills. Just slightly down off my prednisone 'lost weekend' I was already feeling a little grumpy so the arrival of the migraine turned my " little grumpy" into one of those flip sides from the Snickers commercials.
My earlier experiences with migraines rarely lasted beyond 8 hours but they would drag along a mood of depression that would last well through the next day. I probably ticked off a whole lotta people the next day after every headache. ( I Imagine there are 2 or 3 hundred people out in the world right now pumping their fist and yelling "Damn straight, you asshole!!"
I only once ever connected my fist with anyone's face and that was over a migraine , So folks who've only known me in my last 5 migraine free years, you missed the other guy!!! LOL
I) Day 171, 3:10am
It seems that my body does not feel the need for sleep tonight. Perhaps, the result of my stopping the prednisone, or something else??
Two squares of cannabis laced chocolate have failed to achieve their usual result of a rested sleep.
Perhaps I just overworked my mind a little too much today. Armed with a pile of old music books, I spent several hours digging through old music from Dylan and the Band, trying to reconnect my fingers with the memories of songs I hadn't played in well over 15 years.
I remember liking Bob Dylan when to do so was to, essentially, label yourself as a musical outcast in the Midlands of England in the '60's. My tastes were even more eccentric than that, with a distinct love for Fairport Convention and Pentangle. I recall having a crush on a Scottish girl who worked with my Mother. Alas, I forgot her name but I do recall her short skirts and her multicoloured panties!! I also recall her love for very old English music and the songsmith Martin Carthy.
My musical ramblings of that time would probably fill a few note books, but then skipping ahead a few years brought me to Canada, where Dylan seemed to be just slightly more appreciated , but where "the Guess Who" was deemed to be more famous than the Beatles! Say What????
Buffet Saint Marie cemented my interest in Canadian folk and then I was introduced to Leonard Cohen's at the hands of a rival in love and I was thus forced to start taking this music stuff a lot more seriously! LOL
$40 bought be a nylon stringed hollow bodied generic piece of shit folk guitar via the Sears Catalogue outlet in Thompson and thus began my introduction into the world of "real" music.
More than 40 years on, I have written and forgotten more songs and tunes than I care to recall, never really making the effort to properly learn to read music nor seriously honing my craft.
With no work for the foreseeable future and a foreseeable future of undetermined length, it is time I started "literally" getting my shit together and getting it down on paper.
And of course, I now have the luxury of digital audio and video recording via my Macbook and Ipad so I may, ultimately find myself able to present my "work" in a manner that renders them listenable. With a rudimentary knowledge of Garage Band, who knows what I can ferret out of my rather rusted musical brain.
Two squares of cannabis laced chocolate have failed to achieve their usual result of a rested sleep.
Perhaps I just overworked my mind a little too much today. Armed with a pile of old music books, I spent several hours digging through old music from Dylan and the Band, trying to reconnect my fingers with the memories of songs I hadn't played in well over 15 years.
I remember liking Bob Dylan when to do so was to, essentially, label yourself as a musical outcast in the Midlands of England in the '60's. My tastes were even more eccentric than that, with a distinct love for Fairport Convention and Pentangle. I recall having a crush on a Scottish girl who worked with my Mother. Alas, I forgot her name but I do recall her short skirts and her multicoloured panties!! I also recall her love for very old English music and the songsmith Martin Carthy.
My musical ramblings of that time would probably fill a few note books, but then skipping ahead a few years brought me to Canada, where Dylan seemed to be just slightly more appreciated , but where "the Guess Who" was deemed to be more famous than the Beatles! Say What????
Buffet Saint Marie cemented my interest in Canadian folk and then I was introduced to Leonard Cohen's at the hands of a rival in love and I was thus forced to start taking this music stuff a lot more seriously! LOL
$40 bought be a nylon stringed hollow bodied generic piece of shit folk guitar via the Sears Catalogue outlet in Thompson and thus began my introduction into the world of "real" music.
More than 40 years on, I have written and forgotten more songs and tunes than I care to recall, never really making the effort to properly learn to read music nor seriously honing my craft.
With no work for the foreseeable future and a foreseeable future of undetermined length, it is time I started "literally" getting my shit together and getting it down on paper.
And of course, I now have the luxury of digital audio and video recording via my Macbook and Ipad so I may, ultimately find myself able to present my "work" in a manner that renders them listenable. With a rudimentary knowledge of Garage Band, who knows what I can ferret out of my rather rusted musical brain.
H) Day 172- 4 days post chemo
Only one more day on mega prednisone dose of 100mg day. Hopefully I can make it through the day without beating anyone up!!!
After having worked myself up into a slight frenzy at the thought of all the "horrors" of chemo I was rather surprised to wake up Tuesday morning feeling Ok. Ok is actually an understatement. I was actually feeling great in spite of having to get up several times to pee!!
The chemo procedure is actually known as CHOP-R an anachronism for the names of the 5 drugs used in the treatment. I wont bore you with all the names and details at this point.
The chemo (Monday Feb 6th) itself took almost 8 hours, start to finish with the first drug, Rituximab requiring a very slow infusion, 3.5. hours due to the risk of allergic reactions such as severe hives and respiratory distress.
Since a couple of the drugs are nephrotoxic a ramp up in fluid intake was necessary- about 10 glasses a day. Sadly they prohibited the inclusion of beer and wine so it's been tea as well as water infused with lemon slices. That hardly compares with a Valpolicella Ripasso but it will have to do for now.
My next session will be 3 weeks hence, hopefully with similarly few side effects.
Boredom seems to continue as my biggest issue and I am somewhat confined to home as my car is in the shop for an engine repair and I am trying to minimize my use of the loaner vehicle.
I did pull out and re-tune a few of my guitars and was saddened to see that the bridge was lifting on my 6 string Tanglewood. Luckily a repair can be done for around $75 so that isn't too painful.
My fingers will need to see some serious shredding action over the next few days so that I can start building callouses again. The relatively high action on my Fender resonator ( dobro) will make sure that happens fairly quickly, assuming I can stand the pain!
Hopefully I can find a little inspiration and maybe crank out a couple of compositions as I work through the process. It's been several years since I seriously wrote anything so it will be a learning process. Hopefully it will be akin to riding a bicycle and will come back fairly quickly.
After having worked myself up into a slight frenzy at the thought of all the "horrors" of chemo I was rather surprised to wake up Tuesday morning feeling Ok. Ok is actually an understatement. I was actually feeling great in spite of having to get up several times to pee!!
The chemo procedure is actually known as CHOP-R an anachronism for the names of the 5 drugs used in the treatment. I wont bore you with all the names and details at this point.
The chemo (Monday Feb 6th) itself took almost 8 hours, start to finish with the first drug, Rituximab requiring a very slow infusion, 3.5. hours due to the risk of allergic reactions such as severe hives and respiratory distress.
Since a couple of the drugs are nephrotoxic a ramp up in fluid intake was necessary- about 10 glasses a day. Sadly they prohibited the inclusion of beer and wine so it's been tea as well as water infused with lemon slices. That hardly compares with a Valpolicella Ripasso but it will have to do for now.
My next session will be 3 weeks hence, hopefully with similarly few side effects.
Boredom seems to continue as my biggest issue and I am somewhat confined to home as my car is in the shop for an engine repair and I am trying to minimize my use of the loaner vehicle.
I did pull out and re-tune a few of my guitars and was saddened to see that the bridge was lifting on my 6 string Tanglewood. Luckily a repair can be done for around $75 so that isn't too painful.
My fingers will need to see some serious shredding action over the next few days so that I can start building callouses again. The relatively high action on my Fender resonator ( dobro) will make sure that happens fairly quickly, assuming I can stand the pain!
Hopefully I can find a little inspiration and maybe crank out a couple of compositions as I work through the process. It's been several years since I seriously wrote anything so it will be a learning process. Hopefully it will be akin to riding a bicycle and will come back fairly quickly.
G) I have found God, but .......
When faced with the imminent prospect of Death, it seems that many a backsliding atheist somehow manages to crawl their way back to the folds of the Religion of Their Youth.
When my Mother died in August 2011 I spent time at the Chapel in the Hospice, asking/praying for a smooth passage as she slipped into unconsciousness a day or two before she finally succumbed to her cancer. I never knew if my efforts were heard or acknowledged. I was simply reaching to a higher power for help as the transition unfolded.
As I look upon my own potentially short future I find myself still somewhat distant from the idea that a "Higher Power" might control my destiny.
To me, Organized Religion has always represented corruption, abuse of power, greed and mistreatment. Walking through the many Holy landmarks of Europe has done little to modify this view. The Cathedrals of Spain boast treasuries of gold, silver and precious gems that were plundered from now extinct South and Central American cultures who's people were abused and killed in the "Name of the Lord."
A visit to Fatima, a site of Catholic Pilgrimage found me walking through an absolutely artificial concrete tribute to pomp and fundraising, a sterile landscape, totally removed from the alleged miracles that had taken place there some 100 years ago.
And yet, when I walked into small, non-descript native churches in South and Central America I often found myself in the presence of something "other-worldly" Something that seemed to be touching me emotionally, lifting my spirits and bringing me to a place of utter bliss and tranquility.
And sometimes I just felt that I was a stranger and that I should just move on.
Sounds 'F'd up I know but hey, that's life.
The plaque above the fireplace at my Aunty Annie's house pretty well nailed it:
"Don't take Life too seriously. You're not getting out alive anyhow!"
Honest Words to Live by!!!!
To be honest, my most serious blush with religion and faith comes from my introduction to the Bahai Faith in the early 2000's. I no longer consider myself a strict adherent but I still find that their covenants make significantly more sense in than the ancient teaching of Christianity and the Muslim Faith, from which many Bahai principals were adopted.
I am hoping that some time between treatments I can make my way to the North American Bahai House of Worship in Wilmette ( Evanston) Chicago, Il
The building itself, a 9 sided dome is the only House of Worship in North America. Construction commenced in 1922. It is the world's first House of Worship, erected in Wilmette on the cold western banks of Lake Michigan and dedicated in 1953. To describe the building as magnificent, beautiful or Holy displays a degree of my prejudices. Weather, in the form of freezing rain has not been kind to the limestone and marble, although ongoing restorative work shields much of the damage. Non denominational in it's acceptance of all faiths, the structure is, nevertheless a focal point in the life of many Bahai's. Without fixed places of worship- churches or cathedrals, Bahai's worship in followers homes, schools or public buildings that are available. Far better to spend that money on spreading the word of Bahaullah and on charitable deeds than in a fixed structure that is dormant and unused 85% of the time.
As I look upon my own potentially short future I find myself still somewhat distant from the idea that a "Higher Power" might control my destiny.
To me, Organized Religion has always represented corruption, abuse of power, greed and mistreatment. Walking through the many Holy landmarks of Europe has done little to modify this view. The Cathedrals of Spain boast treasuries of gold, silver and precious gems that were plundered from now extinct South and Central American cultures who's people were abused and killed in the "Name of the Lord."
A visit to Fatima, a site of Catholic Pilgrimage found me walking through an absolutely artificial concrete tribute to pomp and fundraising, a sterile landscape, totally removed from the alleged miracles that had taken place there some 100 years ago.
And yet, when I walked into small, non-descript native churches in South and Central America I often found myself in the presence of something "other-worldly" Something that seemed to be touching me emotionally, lifting my spirits and bringing me to a place of utter bliss and tranquility.
And sometimes I just felt that I was a stranger and that I should just move on.
Sounds 'F'd up I know but hey, that's life.
The plaque above the fireplace at my Aunty Annie's house pretty well nailed it:
"Don't take Life too seriously. You're not getting out alive anyhow!"
Honest Words to Live by!!!!
To be honest, my most serious blush with religion and faith comes from my introduction to the Bahai Faith in the early 2000's. I no longer consider myself a strict adherent but I still find that their covenants make significantly more sense in than the ancient teaching of Christianity and the Muslim Faith, from which many Bahai principals were adopted.
I am hoping that some time between treatments I can make my way to the North American Bahai House of Worship in Wilmette ( Evanston) Chicago, Il
The building itself, a 9 sided dome is the only House of Worship in North America. Construction commenced in 1922. It is the world's first House of Worship, erected in Wilmette on the cold western banks of Lake Michigan and dedicated in 1953. To describe the building as magnificent, beautiful or Holy displays a degree of my prejudices. Weather, in the form of freezing rain has not been kind to the limestone and marble, although ongoing restorative work shields much of the damage. Non denominational in it's acceptance of all faiths, the structure is, nevertheless a focal point in the life of many Bahai's. Without fixed places of worship- churches or cathedrals, Bahai's worship in followers homes, schools or public buildings that are available. Far better to spend that money on spreading the word of Bahaullah and on charitable deeds than in a fixed structure that is dormant and unused 85% of the time.
F) Day 180. Slow progress.
( Some of this is a bit of a re-hash from an early post so apologies - Every good story has a couple of flashbacks so just considered this as one of them.
A weekend in Windsor provided a pleasant respite from my boredom. I'm 12 days into my "unofficial" retirement and have managed, so far, to keep myself busy. But some days seem to be a bit more of a challenge. The weekend marked the start of Chinese New Year so it was fitting that we had lunch on Sunday at Jade Garden, one of the 2 dim sum restaurants in Windsor. Our third dim sum experience in less than a week but this was the only one with a Lion Dance- 2 Lions to be exact.
A weekend in Windsor provided a pleasant respite from my boredom. I'm 12 days into my "unofficial" retirement and have managed, so far, to keep myself busy. But some days seem to be a bit more of a challenge. The weekend marked the start of Chinese New Year so it was fitting that we had lunch on Sunday at Jade Garden, one of the 2 dim sum restaurants in Windsor. Our third dim sum experience in less than a week but this was the only one with a Lion Dance- 2 Lions to be exact.
So now commences the Year of the Rooster. I can't honestly say I give a Cluck!
Last Thursday marked my pre-chemo visit with Dr Howson-Jan who gave me some fairly positive news. My lymphoma seems to be reasonably confined to the abdominal area so they have chosen an alternative to the standard treatment of 6 doses of chemo.
Instead he is suggesting 3 doses followed by a treatment of radiation. Of course that will hinge on the results of a bone marrow biopsy.
I have a list of several "Absolutely Terrifying" medical procedures that I have tried not to think about ever getting. Bone marrow removal is one of the ones that ranks close to the top as I mentally picture a screaming patient being subjected to a drill being used to extract marrow from their femur!!!
I was someone perturbed when I asked Dr H-J when he planned on doing this.
"How about now?" was his response and I think I was too stunned to say anything but "Sure, what the H!"
The sample was actually extracted from the back of my hip bone and they froze the area with a good deal of "local" so the pain, while significant, was significantly less than I was expecting.
Chemo was scheduled to start this week but due to the need to co-ordinate the treatment with my kidney stent replacement it has been bumped back to Monday Feb 3rd.
In anticipation of the potential discomfort of the chemo, I decided last week to follow up on my MD's earlier suggestion to consider using Cannabis. It took less than a week from him initiating the paperwork to me being able to place my first order.
I decided that a 5 gm sample will be enough. My actual allowance for a month has been set far higher. I was picturing something the size of a hay bale but I guess it is somewhat smaller but surely far more than I will ever consume.
I've been a pharmacist for over 40 years but perusing online charts regarding the various THC and CBD contents of differing strains is something beyond my usual scope of practise.
The strains have names like Banana Kush, Chocolate Fondue, Lemon skunk etc. I selected a strain plainly labelled as Palm Tree CBD ( leaves by Snoop!!) It will arrive via Canada Post some time tomorrow.
At 9 gm it seemed like an OK price but they tack on a $4 shipping charge plus HST. I dont mind the shipping but why should I pay tax on, what is, essentially, a prescription medication?
Provincial Liberals will tax anything and everything to stuff their war chests with cash.
Meanwhile MD's are prescribing narcs to welfare recipients who obtain them totally without cost. They then sell them on the street for 10 times their original price. Of course, the tax man is no-where to be seen when that shit is going on.
But who am I to judge? If you are nodding in agreement kindly bugger off!! LOL
I have every right to judge, having witnessed this fiasco unfolding over the last 25 years, one of the few pharmacists trying to hold their finger in the proverbial dyke while physicians and drug reps. ran amuck justifying their existence while promoting a path to destruction.
I have every right to judge, having witnessed this fiasco unfolding over the last 25 years, one of the few pharmacists trying to hold their finger in the proverbial dyke while physicians and drug reps. ran amuck justifying their existence while promoting a path to destruction.
When they asked me at my initial Cancer Clinic visit if I had any type of "Religious Affiliation" my response was "No." Having had time to reflect on things, I am debating on rescinding that notation.
I actually converted to the Bahai Faith some 16 years ago but I stopped attending Gatherings when the London Chapter stopped meeting as a large group and began to hold smaller regional firesides.
While I respect their Teachings, like many other religions, their rejection of "alternative life styles" ( as a general description for the current LGBXYZ!! designation used in the public press) was in conflict with my personal views and while I understand it, in the context of teaching "Religious Norms" It was one of the breaking points.
I have had no contact from anyone within the Faith for over 10 years, but I do still feel a connection and might bridge that gap in the days ahead.
E) Day 187- Things are happening
Today was my first pre-chemo screening. It was also an opportunity to meet one of my greatest fears!!
Dr Howson-Jan ( my chemo doctor) was polite but fairly brief as he told me that the area affected by lymphoma was relatively small and that my chemo might be reduced to 3 sessions followed by a treatment of radiation.
That great piece of news was immediately followed by: "We'll need to do a bone marrow biopsy to make sure your bone marrow isn't affected." "And when are you planning that??" "NOW".
At that point I was about ready to run down the hall screaming but he reassured me it wasn't all that bad. Yeah?? A hole in my pelvis and it doesn't hurt. The famously common medical term "this might cause you some slight discomfort" quickly came to mind. For those too young or too healthy to have heard those words, it is "medical-speak" for "this is going to hurt like hell but I really don't care!"
Actually once the freezing was in it was more pressure than pain and it lasted less than 5 minutes. I never did turn my head to see what instruments of torture were laid out on the sterile drapes beside me. Having watched the Borgias and Game of Thrones of late, I did not need a whole lot of imagination to conjure up the idea of what I was experiencing.
In all honesty, while the term Bone Marrow Biopsy was close to the top of the all time list of the TEN Medical Procedures I never want done to me, it really wasn't that bad. If you see the other 9 on my list, you will see that I have been through 3 and by the time I'll be done, I will have knocked off at least 6 or 7 on the list. For your info, none involve pulling my bottom lip over the top of my head! ( Carol Burnett's description of childbirth for men!!)
Now at 9 pm my lower back feels like I took a boot with a steel toe but I imagine a tramacet will fix that pretty quickly.
Chemo is going to start next week. I'm looking forward to that! NOT. But at least its a start.
Footnote from February- due to the need to co-ordinate my kidney stent replacement with my chemo, the latter was actually delayed a week.
Dr Howson-Jan ( my chemo doctor) was polite but fairly brief as he told me that the area affected by lymphoma was relatively small and that my chemo might be reduced to 3 sessions followed by a treatment of radiation.
That great piece of news was immediately followed by: "We'll need to do a bone marrow biopsy to make sure your bone marrow isn't affected." "And when are you planning that??" "NOW".
At that point I was about ready to run down the hall screaming but he reassured me it wasn't all that bad. Yeah?? A hole in my pelvis and it doesn't hurt. The famously common medical term "this might cause you some slight discomfort" quickly came to mind. For those too young or too healthy to have heard those words, it is "medical-speak" for "this is going to hurt like hell but I really don't care!"
Actually once the freezing was in it was more pressure than pain and it lasted less than 5 minutes. I never did turn my head to see what instruments of torture were laid out on the sterile drapes beside me. Having watched the Borgias and Game of Thrones of late, I did not need a whole lot of imagination to conjure up the idea of what I was experiencing.
In all honesty, while the term Bone Marrow Biopsy was close to the top of the all time list of the TEN Medical Procedures I never want done to me, it really wasn't that bad. If you see the other 9 on my list, you will see that I have been through 3 and by the time I'll be done, I will have knocked off at least 6 or 7 on the list. For your info, none involve pulling my bottom lip over the top of my head! ( Carol Burnett's description of childbirth for men!!)
Now at 9 pm my lower back feels like I took a boot with a steel toe but I imagine a tramacet will fix that pretty quickly.
Chemo is going to start next week. I'm looking forward to that! NOT. But at least its a start.
Footnote from February- due to the need to co-ordinate my kidney stent replacement with my chemo, the latter was actually delayed a week.
D) Day 191- Saturday in the Fog (apologies to Chicago!)
Last night I did something I hadn't done in many months. I almost slept through the entire night. ( A rare occurrence, especially when in Listowel)
I might have made it all the way through, but Docie decided that 4am was a good time to empty her bowels and bladder. Since I prefer her not to do those things in the house I found myself pulling on a pair of pants and stumbling out the front door to make sure she didn't take off and wake the neighbourhood. It didn't take long to get her back in the house and before I knew it I'd fallen back to sleep and we both woke up in time to see Susanna heading off to work for the day.
Looking out over the Maitland, it was clear that things were not clear. A dense fog shrouded everything beyond the garden shed, a sign that I shouldn't be in too big a rush to get anywhere soon.
That was perfectly fine with me. The previous week had been busy enough and I was more than happy to lay around doing nothing for a few hours.
For some reason I have found myself a little shy of energy of late and I'm trying to inspire myself to get a bit more exercise.
When I got back to London later in the day I found that my son had purchased me an Apple Watch so I spent the balance of my time setting it up and linking it to my iPhone. So now I have a device that can give me instant reminders of just how lazy I am. It also has an app. (Pillow) that can monitor my sleep patterns so I will now be able to stay up all night worrying about why my sleep patterns are all F'd up!!!!
Thursday was, unofficially, my last full day at work until I get through my upcoming chemo. A typical day runs 9.5 hours and I was finding that by the time I was getting past hour 8, I was getting a little too fatigued to keep going. Thankfully I have been given the option of working a couple of partial shifts, 2 or 3 days a week so the transition to being a completely unemployed bum can be slowed down slightly.
Perhaps it is time to dust off the old Ovation and see if I can still remember some major guitar chords!!!
I might have made it all the way through, but Docie decided that 4am was a good time to empty her bowels and bladder. Since I prefer her not to do those things in the house I found myself pulling on a pair of pants and stumbling out the front door to make sure she didn't take off and wake the neighbourhood. It didn't take long to get her back in the house and before I knew it I'd fallen back to sleep and we both woke up in time to see Susanna heading off to work for the day.
Looking out over the Maitland, it was clear that things were not clear. A dense fog shrouded everything beyond the garden shed, a sign that I shouldn't be in too big a rush to get anywhere soon.
That was perfectly fine with me. The previous week had been busy enough and I was more than happy to lay around doing nothing for a few hours.
For some reason I have found myself a little shy of energy of late and I'm trying to inspire myself to get a bit more exercise.
When I got back to London later in the day I found that my son had purchased me an Apple Watch so I spent the balance of my time setting it up and linking it to my iPhone. So now I have a device that can give me instant reminders of just how lazy I am. It also has an app. (Pillow) that can monitor my sleep patterns so I will now be able to stay up all night worrying about why my sleep patterns are all F'd up!!!!
Thursday was, unofficially, my last full day at work until I get through my upcoming chemo. A typical day runs 9.5 hours and I was finding that by the time I was getting past hour 8, I was getting a little too fatigued to keep going. Thankfully I have been given the option of working a couple of partial shifts, 2 or 3 days a week so the transition to being a completely unemployed bum can be slowed down slightly.
Perhaps it is time to dust off the old Ovation and see if I can still remember some major guitar chords!!!
C) Day 195, barely
It is 3am as I write this. The temperature outside is 0 degrees C according to my phone app. and the street looks like the world's largest curling rink as a light shower of freezing rain applies a thin film of ice to everything. The morning commute will be an interesting mess when it happens, fortunately I'm not going anywhere till noon so it should have thawed out by then.
Tomorrow, or rather later today is when I drive to St Joe's for a PET scan. I should throw in a smartass comment here about taking my dog but right now I'm all out of funny.
This is the test that will tell the oncology team just how much of my body is affected by the lymphoma. I have not, at this point, been told when they will pass that information on to me.
Monday was my first day at work since the diagnosis was confirmed. The staff seemed to be tiptoeing around me, not really saying too much, or was that my imagination? Hard to say but a couple of my usual "smart ass" comments later, everyone seemed relaxed and back to normal.
I've been a pharmacist for well over 40 years and I've seen many of my patients go through the treatments that I'm about to experience. I didn't ever expect that it would happen to me.
Strangely enough, this is not my first exposure to cancer. Stranger still is the fact that this current situation has no link to the former- kind of like getting struck by lightning twice! Go figure!
The previous malignancy is a story unto itself and I think I have enough journals and scrap notes about that time to rekindle the memories rattling around in the back of my brain. Perhaps the opportunity to link them in will arise when I get stuck for new ideas about my current situation.
Tomorrow, or rather later today is when I drive to St Joe's for a PET scan. I should throw in a smartass comment here about taking my dog but right now I'm all out of funny.
This is the test that will tell the oncology team just how much of my body is affected by the lymphoma. I have not, at this point, been told when they will pass that information on to me.
Monday was my first day at work since the diagnosis was confirmed. The staff seemed to be tiptoeing around me, not really saying too much, or was that my imagination? Hard to say but a couple of my usual "smart ass" comments later, everyone seemed relaxed and back to normal.
I've been a pharmacist for well over 40 years and I've seen many of my patients go through the treatments that I'm about to experience. I didn't ever expect that it would happen to me.
Strangely enough, this is not my first exposure to cancer. Stranger still is the fact that this current situation has no link to the former- kind of like getting struck by lightning twice! Go figure!
The previous malignancy is a story unto itself and I think I have enough journals and scrap notes about that time to rekindle the memories rattling around in the back of my brain. Perhaps the opportunity to link them in will arise when I get stuck for new ideas about my current situation.
B) Day 198/197- reality slowly sets in.
After 2 days the reality of the situation seems to have settled in and I have started to accept my current "situation."We are relaxing at a hotel in Richmond Hills/ Markham - just north of Toronto.
Following a filling breakfast at the Sheraton next door, we are awaiting the arrival of my daughter, Caitlin.
The night was rather restless, the result of sleeping in an unfamiliar room with a defective thermostat- alternating between too hot and too cold. Pain from the stent wasn't helping and neither were the prescribed pain relievers so I ultimately resorted to a little CBD vapour and the rest of the night passed peacefully.
9pm
After today, I'm pretty sure I'll be OK with a hiatus from Chinese food for a while. All in all it was very good- Dim Sum for lunch and an assortment of Cantonese dishes for supper but I think that will hold me for a couple of weeks.
Caitlin is here for the evening so we will have a few hours together before she heads back to Belleville. I brought her up to speed on my situation and she seemed OK with it, but it is sometimes hard to know what other people are thinking. Hell, its hard to know what I myself am thinking some days.
6pm Sunday
Back in London after breakfast together and the usual obligatory trip to T&T. Susanna spent a half an hour poking through the dried veggie and herb section looking for all the "immune system stimulants." The problem with most of them is that whether or not they do anything, getting them to go down and stay down is the challenge. I declined her suggestions but she did insist on buying some pure ginseng tea. I'm not overly thrilled but I'll give it a try!
Looks like Docie was quite a "Demanding Princess" while I was away. She ran to the door as soon as I got home and has been sticking fairly close ever since- spoiled rotten!- or dogs do have some kind of Sixth Sense that radars them into cancer detection.
I plan to make this a lazy night, take out lemon chicken for supper along with some rice and a generous helping of Shanghai Bok Choi Miu. Hopefully with enough left over for lunch tomorrow.
Then an hour or two of Netflix- episodes 10 and 11 of The Borgias.
Between that and Game of Thrones, all I can say is that this Chemo better work otherwise I may not make it all the way to the final series!!! LOL. Boy will that piss me off!!!!
Following a filling breakfast at the Sheraton next door, we are awaiting the arrival of my daughter, Caitlin.
The night was rather restless, the result of sleeping in an unfamiliar room with a defective thermostat- alternating between too hot and too cold. Pain from the stent wasn't helping and neither were the prescribed pain relievers so I ultimately resorted to a little CBD vapour and the rest of the night passed peacefully.
9pm
After today, I'm pretty sure I'll be OK with a hiatus from Chinese food for a while. All in all it was very good- Dim Sum for lunch and an assortment of Cantonese dishes for supper but I think that will hold me for a couple of weeks.
Caitlin is here for the evening so we will have a few hours together before she heads back to Belleville. I brought her up to speed on my situation and she seemed OK with it, but it is sometimes hard to know what other people are thinking. Hell, its hard to know what I myself am thinking some days.
6pm Sunday
Back in London after breakfast together and the usual obligatory trip to T&T. Susanna spent a half an hour poking through the dried veggie and herb section looking for all the "immune system stimulants." The problem with most of them is that whether or not they do anything, getting them to go down and stay down is the challenge. I declined her suggestions but she did insist on buying some pure ginseng tea. I'm not overly thrilled but I'll give it a try!
Looks like Docie was quite a "Demanding Princess" while I was away. She ran to the door as soon as I got home and has been sticking fairly close ever since- spoiled rotten!- or dogs do have some kind of Sixth Sense that radars them into cancer detection.
I plan to make this a lazy night, take out lemon chicken for supper along with some rice and a generous helping of Shanghai Bok Choi Miu. Hopefully with enough left over for lunch tomorrow.
Then an hour or two of Netflix- episodes 10 and 11 of The Borgias.
Between that and Game of Thrones, all I can say is that this Chemo better work otherwise I may not make it all the way to the final series!!! LOL. Boy will that piss me off!!!!
A) 12/01/17- Day Two Hundred- Shit Happens!!!!
This is the first entry of my new blog. I was going to call it the Cancer Diaries, but I'm sure that that title has probably been appropriated at least several times by others in a similar boat, so instead, The Two Hundred Days will suffice.
It's purpose is to document my progress for the next 18 weeks or so as I undergo chemotherapy for my second go round with malignancy:
Be warned in advance that the mood and scope of these entries ranges through some major swings of mood and health since we are discussing my life and potential threats to its continued existence. Apologies to those who find my take on "organized religion" ( which may include your own) offensive. The fact that I take no real interest in your particular brand of "faith" has no bearing on my actual beliefs. Those are, for the most part, left out of the conversation, although they may occasionally arise from time to time.
Today is Thursday January 12th. Tomorrow will be Friday the 13th, a day that matters little at this point as today, I already got my full dose of bad luck for the year!
That is not strictly true. The day of the "bad luck" clearly started many months or perhaps even years ago. Today only the full extent of the situation was revealed.
The last 3 months has been an endless cycle of "hurry up and wait" moments as I eagerly awaited the rejection or confirmation of various assumptions (aka self diagnoses) on my health.
I now have been diagnosed with non-Hodgkins Lymphoma and more specifically I have been diagnosed with Diffuse Large B Cell Lymphoma as well as Follicular Lymphoma. These names, at this point mean little to me but the result is that I am dealing with a mix of aggressively progressing and moderately progressing disease. Its starting point has been determined to be in the left abdomen and initially made it's impact known when I started passing blood in my urine on a trip through Europe in September. So I am literally getting "Pissed Off!"
Staging is a measure of the progression of the disease and at this point I have been classified as Stage III A, which means that things are moving along PDQ ( pretty damn quick). My best guess was that I was in Stage I or early Stage II, just shows I'm no expert.
I have called today Day 200 since the chemo will take a couple of weeks to get started. It will then be repeated every 21 days for a total of 6 cycles. Adding in an extra 2 cycles ( on the odd chance that the 6 treatments alone don't work) brings me to an end point that is roughly 190 days away. I decided I should allow a little extra and "the Two Hundred Days" sounds a little more sensible than something like "191 and counting"
Any road up, I'm going to hold onto this and stack up my posts for a few weeks before I start rolling them out to the world. I imagine the style of my writing will be somewhat erratic as I bounce between moods.
Today I am still a little numb from the final diagnosis.
Lymphoma, typically has a 50% survival rate at the 5 year mark so I asked the physician what he felt my prognosis would be if I delayed or refused treatment.
His response, " At best a few months."
Wow, talk about a smack in the cojones with a large flat bat!!
Suffice to say, I have spent the balance of today watching my head spin around like Linda Blair in the Exorcist ( A movie that I laughed through most of!!) (Incidentally, the writer of that book died shortly after I wrote this update!)
Approaching 11pm, I am somewhat calmer and a little more resigned to my upcoming situation.
My plan is to count down to day 1 on perhaps a daily to weekly cycle depending on how things change. Shit happens!!!! And who better to deal with it than myself, who my Mother often called a "Proper Geordie Shit Stirrer." A title that I bear proudly!!! LOL
It's purpose is to document my progress for the next 18 weeks or so as I undergo chemotherapy for my second go round with malignancy:
Be warned in advance that the mood and scope of these entries ranges through some major swings of mood and health since we are discussing my life and potential threats to its continued existence. Apologies to those who find my take on "organized religion" ( which may include your own) offensive. The fact that I take no real interest in your particular brand of "faith" has no bearing on my actual beliefs. Those are, for the most part, left out of the conversation, although they may occasionally arise from time to time.
Today is Thursday January 12th. Tomorrow will be Friday the 13th, a day that matters little at this point as today, I already got my full dose of bad luck for the year!
That is not strictly true. The day of the "bad luck" clearly started many months or perhaps even years ago. Today only the full extent of the situation was revealed.
The last 3 months has been an endless cycle of "hurry up and wait" moments as I eagerly awaited the rejection or confirmation of various assumptions (aka self diagnoses) on my health.
I now have been diagnosed with non-Hodgkins Lymphoma and more specifically I have been diagnosed with Diffuse Large B Cell Lymphoma as well as Follicular Lymphoma. These names, at this point mean little to me but the result is that I am dealing with a mix of aggressively progressing and moderately progressing disease. Its starting point has been determined to be in the left abdomen and initially made it's impact known when I started passing blood in my urine on a trip through Europe in September. So I am literally getting "Pissed Off!"
Staging is a measure of the progression of the disease and at this point I have been classified as Stage III A, which means that things are moving along PDQ ( pretty damn quick). My best guess was that I was in Stage I or early Stage II, just shows I'm no expert.
I have called today Day 200 since the chemo will take a couple of weeks to get started. It will then be repeated every 21 days for a total of 6 cycles. Adding in an extra 2 cycles ( on the odd chance that the 6 treatments alone don't work) brings me to an end point that is roughly 190 days away. I decided I should allow a little extra and "the Two Hundred Days" sounds a little more sensible than something like "191 and counting"
Any road up, I'm going to hold onto this and stack up my posts for a few weeks before I start rolling them out to the world. I imagine the style of my writing will be somewhat erratic as I bounce between moods.
Today I am still a little numb from the final diagnosis.
Lymphoma, typically has a 50% survival rate at the 5 year mark so I asked the physician what he felt my prognosis would be if I delayed or refused treatment.
His response, " At best a few months."
Wow, talk about a smack in the cojones with a large flat bat!!
Suffice to say, I have spent the balance of today watching my head spin around like Linda Blair in the Exorcist ( A movie that I laughed through most of!!) (Incidentally, the writer of that book died shortly after I wrote this update!)
Approaching 11pm, I am somewhat calmer and a little more resigned to my upcoming situation.
My plan is to count down to day 1 on perhaps a daily to weekly cycle depending on how things change. Shit happens!!!! And who better to deal with it than myself, who my Mother often called a "Proper Geordie Shit Stirrer." A title that I bear proudly!!! LOL
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