So it comes. Bad news.
My last scan indicated progression despite chemotherapy.
Chemotherapies are like antibiotics. Eventually, the body develops a resistance to them, and they no longer work to control the tumour. Patients develop “resistance mutations.” If one has heterogeneous tumours (some respond, some don’t), eventually the resistant tumour “takes over” the responsive ones, making chemo completely ineffective.
When this happens, sometimes patients can switch to another chemotherapy. Unfortunately, in my case, I have no other authorized options.
This leaves surgery and radiation as my only hope of local control. Referrals are in for those opinions, but with the healthcare system still in damage-control it may be many weeks or months before I learn anything. In previous discussions, the surgeon and I agreed that the ultimate surgery (total pelvic exenteration, or complete removal of EVERY organ in the pelvis) is too morbid for me at my age. So unless they can propose something else, I expect the surgery road is also a dead end.
That leaves radiation. They have been having good success with some women getting radiation to the pelvic sidewall using very targeted beams and special technologies. I have a delicate surgical repair in that area, though, and it could fall apart if radiated. So I need to learn if they can target the radiation precisely, or not. If they cannot offer the targeted therapy (called SBRT) in NS, I may have to go back to Sunnybrook in Toronto to find an expert who can do it.
As super long shot: my last tumour was tested and found to have a mutation often found in breast and prostate cancer. There is an oral chemo pill that is for those disease sites I could try. In modern cancer science, oncologist want to treat the underlying mutations regardless of the body part involved, but currently all government funding is organized by the body part labels. So that drug is outside the formulary for colorectal cancer. Access would be another huge fight, and even if granted I would have to pay out of pocket for it. (Thank God I won that medical malpractice lawsuit against my bungling diagnostic doctors that helps me cover my prodigious costs of care).
Meanwhile, I continue with my advocacy as well as I can. I am the patient representative on the planning of the National Healthcare Leaders Conference in June. I am serving on patient panels to promote advances in colorectal cancer, such as lowering the screening age from 50 to 45.
And finally, I am raising money as always for Relay for Life, to support the Canadian Cancer Society. CCS has really suffered under the pandemic. We need to build them back up to restore their support and research programs. I stayed in the Lodge That Gives for 2 months in the past, and may need it again if I get radiation. Please consider donating to my Relay. Click here to go to my fundraising page, and you will get an automatic receipt online. For those who donate $100 or more, I will light a luminary to honour your loved one.
Scottish poet Robbie Burns wrote: “The best laid schemes o' mice an' men / Gang aft a-gley.” We all know this: COVID has made many a travel go awry. Andrew and I had hoped to go on a trailer trip to Newfoundland this August. Maybe that can happen, maybe not. We would really love it if we could, as it would be the crown on our previous tour of all Canadian provinces and a territory.
Today’s song is “Get Back Up” by the clever Canadian group Barenaked Ladies, from their 2015 album Silverball. It is an extended boxing metaphor that resonates with me as I pivot to face my new treatment challenges. Truly, I am “on the ropes”. But what are the options? Hit the canvas? The song exhorts us to keep standing. Which is what I will try to do.
I'm a little bit worse for wear
Got a little bit more grey hair
I'm not gonna be the next big thing, but I'm getting fitted for a new brass ring
I been dunked, I've been kicked around
Now I'm ready for the big rebound
I know you can't win them all, but I'm swingin' like Pitt gettin' hits in Moneyball
Get back, get back up
You gotta get back, get back up
You got a whole stadium on their feet, it's not about a victory or defeat
See you gotta get back, get back up
You gotta get back, get back up
Not everything is sink or swim
You can’t fly if the air’s too thin
The best part of the ride is the freefall
Better keep your arms and legs in the vehicle
Standing eight and I'm on the ropes
Knees givin' but I won’t lose hope
I‘m not the second coming of Muhammad Ali, but can I get a "WOOT" for the boxing imagery?
Get back, get back up
You gotta get back, get back up
You got a whole stadium on their feet, it's not about a victory or defeat
See you gotta get back, get back up
You gotta get back, get back up
Gotta get back, gotta get back
Gotta get back, gotta get back
Gotta get back, gotta get back
Gotta get back, gotta get back
Gotta get back, gotta get back
Gotta get back, gotta get back
Get back, get back up
You gotta get back, get back up
You got a whole stadium on their feet, it's not about a victory or defeat
See you gotta get back, get back up
You gotta get back, get back up
Everybody's up on their feet, it's not about a victory or defeat
See you gotta get back, get back up
You gotta get back, get back up
Gotta get back, gotta get back
Gotta get back, gotta get back
Gotta get back, gotta get back
Gotta get back, gotta get back
Gotta get back, gotta get back
Gotta get back, gotta get back
My last scan indicated progression despite chemotherapy.
Chemotherapies are like antibiotics. Eventually, the body develops a resistance to them, and they no longer work to control the tumour. Patients develop “resistance mutations.” If one has heterogeneous tumours (some respond, some don’t), eventually the resistant tumour “takes over” the responsive ones, making chemo completely ineffective.
When this happens, sometimes patients can switch to another chemotherapy. Unfortunately, in my case, I have no other authorized options.
This leaves surgery and radiation as my only hope of local control. Referrals are in for those opinions, but with the healthcare system still in damage-control it may be many weeks or months before I learn anything. In previous discussions, the surgeon and I agreed that the ultimate surgery (total pelvic exenteration, or complete removal of EVERY organ in the pelvis) is too morbid for me at my age. So unless they can propose something else, I expect the surgery road is also a dead end.
That leaves radiation. They have been having good success with some women getting radiation to the pelvic sidewall using very targeted beams and special technologies. I have a delicate surgical repair in that area, though, and it could fall apart if radiated. So I need to learn if they can target the radiation precisely, or not. If they cannot offer the targeted therapy (called SBRT) in NS, I may have to go back to Sunnybrook in Toronto to find an expert who can do it.
As super long shot: my last tumour was tested and found to have a mutation often found in breast and prostate cancer. There is an oral chemo pill that is for those disease sites I could try. In modern cancer science, oncologist want to treat the underlying mutations regardless of the body part involved, but currently all government funding is organized by the body part labels. So that drug is outside the formulary for colorectal cancer. Access would be another huge fight, and even if granted I would have to pay out of pocket for it. (Thank God I won that medical malpractice lawsuit against my bungling diagnostic doctors that helps me cover my prodigious costs of care).
Meanwhile, I continue with my advocacy as well as I can. I am the patient representative on the planning of the National Healthcare Leaders Conference in June. I am serving on patient panels to promote advances in colorectal cancer, such as lowering the screening age from 50 to 45.
And finally, I am raising money as always for Relay for Life, to support the Canadian Cancer Society. CCS has really suffered under the pandemic. We need to build them back up to restore their support and research programs. I stayed in the Lodge That Gives for 2 months in the past, and may need it again if I get radiation. Please consider donating to my Relay. Click here to go to my fundraising page, and you will get an automatic receipt online. For those who donate $100 or more, I will light a luminary to honour your loved one.
Scottish poet Robbie Burns wrote: “The best laid schemes o' mice an' men / Gang aft a-gley.” We all know this: COVID has made many a travel go awry. Andrew and I had hoped to go on a trailer trip to Newfoundland this August. Maybe that can happen, maybe not. We would really love it if we could, as it would be the crown on our previous tour of all Canadian provinces and a territory.
Today’s song is “Get Back Up” by the clever Canadian group Barenaked Ladies, from their 2015 album Silverball. It is an extended boxing metaphor that resonates with me as I pivot to face my new treatment challenges. Truly, I am “on the ropes”. But what are the options? Hit the canvas? The song exhorts us to keep standing. Which is what I will try to do.
I'm a little bit worse for wear
Got a little bit more grey hair
I'm not gonna be the next big thing, but I'm getting fitted for a new brass ring
I been dunked, I've been kicked around
Now I'm ready for the big rebound
I know you can't win them all, but I'm swingin' like Pitt gettin' hits in Moneyball
Get back, get back up
You gotta get back, get back up
You got a whole stadium on their feet, it's not about a victory or defeat
See you gotta get back, get back up
You gotta get back, get back up
Not everything is sink or swim
You can’t fly if the air’s too thin
The best part of the ride is the freefall
Better keep your arms and legs in the vehicle
Standing eight and I'm on the ropes
Knees givin' but I won’t lose hope
I‘m not the second coming of Muhammad Ali, but can I get a "WOOT" for the boxing imagery?
Get back, get back up
You gotta get back, get back up
You got a whole stadium on their feet, it's not about a victory or defeat
See you gotta get back, get back up
You gotta get back, get back up
Gotta get back, gotta get back
Gotta get back, gotta get back
Gotta get back, gotta get back
Gotta get back, gotta get back
Gotta get back, gotta get back
Gotta get back, gotta get back
Get back, get back up
You gotta get back, get back up
You got a whole stadium on their feet, it's not about a victory or defeat
See you gotta get back, get back up
You gotta get back, get back up
Everybody's up on their feet, it's not about a victory or defeat
See you gotta get back, get back up
You gotta get back, get back up
Gotta get back, gotta get back
Gotta get back, gotta get back
Gotta get back, gotta get back
Gotta get back, gotta get back
Gotta get back, gotta get back
Gotta get back, gotta get back
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