Jumping to the next lilypad.
I met both of my new specialists over the past few days. I'll get to those experiences in a moment but first I want to describe what it was like to be admitted to the provincial Cancer Agency who is providing my care.
The British Columbia Cancer Agency - under its hip new moniker BC Cancer - is responsible for cancer research and treatment for the citizens of British Columbia. One of the province-wide components of the Provincial Health services Authority (PHSA), BC Cancer operates cancer treatment centres throughout the province. This still requires a lot of cancer patients to travel to see their specialists or get their treatments, but in my case my closest cancer clinic was across town from where I live. A half-hour drive - maybe up to an hour if the traffic is bad - is the only barrier between me and my care; all services, treatments, and investigations are fully funded by the province.
Well, everything except parking. Some people in this province get VERY upset that patients and their loved ones have to pay for parking, but in the grand scheme of things I can't really complain about paying less than three bucks every time I need to see my specialists or get treatment if nothing else is costing me a nickel.
Before my wife and I could pay for parking though, I had to fill out the nine page Patient-Reported Information and Symptom Measurement (PRISM) form that would start my medical chart with BC Cancer. I'd suggest you follow the link and look at the form; my only real complaint about it is that BC Cancer has not published this as a fillable PDF so I could type my reponses and print it out, requiring me to grab a quill and ink (or something equally old-timey and quaint) to scratch my barely legible responses on the page. The actual content of the form is broad and holistic and offers significant diversity of questions to capture a snapshot of who I am and how I am doing at this point in my journey.
Some of the questions actually made me think more about how I was really doing. I mean, physically I feel great, but there is still a lot to cope with emotionally and mentally and I suppose I haven't really paid much attention to that side of things up until now. In particular, the section on advance care planning caught my interest; advanced directives can be very polarizing based on people's faith and philosophy, but they also help the author of the directive to structure their wishes and then have a voice when loved ones may be called upon to speak on their behalf.
I have always been up-front with my kids about what my desires are should I become incapacitated and they are asked to make decisions about my care. I have done this because I want as much as possible to liberate them from any guilt or anxiety as they try to imagine what I might want, but the fact is that it is logistically almost impossible to enforce these unless the next of kin are aware of and in agreement with these wishes. That said, the BC government has published an Advance Care Planning Guide that can help to create a valid and concise representation agreement for future care.
Let me be clear here; I am not planning on dying. I mean, eventually I am, but not for thirty or forty years at least. I wanted to create a legally sound advance directive before I was diagnosed with cancer but life is always so busy that aside from the conversations with my kids I haven't actually done anything about it. Page 5 on the PRISM form not only brought that thought back into my consciousness, it offered me an opportunity to have someone from BC Cancer contact me to help me with the process.
That's pretty much the way BC Cancer operates. They seem to have significant personnel and volunteer resources to make the potentially terrifying prospect of dealing with cancer treatment less, well, terrifying. I presented to the reception desk and the person there stopped what they were doing immediately and gave me their full attention. He looked me up in the computer system and told me what clinic I would be going to, then called over a volunteer to take me on a short tour of the building and explain the process I would follow through each of my appointments. The volunteer was amazing; he was young but kind and patient and made sure that any questions we had were answered. He walked me to the waiting area for my appointment and told me another volunteer would call me when it was time for my appointment as he handed me a sheet with contact numbers and a form that I could fill out with information like what my diagnosis was and when my next appointment is scheduled. There was also a medication reconciliation form to edit; the volunteer explained that the doctor would go through it with me during my consultation.
I already knew that and as a pharmacist I already knew more about medication reconciliation than he would have guessed I could. It was still comforting to have someone care and take the time to make sure everything was explained to me.
Even the architecture of the local cancer clinic is soothing. I can't speak for all BC Cancer clinics but our local clinic is a modern, beautiful building that is consistent with West Coast architecture - lots of open spaces and glass to let in natural light, exposed wooden beams that architecturally echo the lush, rich forests of our rainforests, and stone wall trims and variegated tile floors that look almost exactly like the Vancouver Island granite that you see everywhere on our beautiful island.
A second volunteer came out to greet me a few minutes after I had sat down, introducing himself and apologizing that there was no peppermint tea available yet but that he could get some for me if I wanted. I'm slightly skeptical about how rigourous the science is behind it, but peppermint tea has been shown to have health benefits and contribute to relaxation so BC Cancer makes it freely available to patients and their caregivers. I declined, but the volunteer offered to check back when the beverage cart made its rounds to get me a coffee or tea if I wanted. I told him that would be nice as he led my wife and I into a comfortable exam room to wait for the medical oncologist.
Next up was an efficient but friendly health care aide (HCA) whose job it was to take my vital signs (after my surgery I am very comfortable with having my blood pressure, temperature, and heart rate recorded) as well as get an accurate height and weight as part of my care. Chemotherapy is almost always based on body surface area (BSA), and BSA is calculated by a combination of height and weight. It's important that those values be accurate so two HCAs independently measured my height and weight, agreeing on the values they got before they were entered on my chart. This same process will be followed at the start of each course of therapy for me so that any changes in weight and therefore BSA are accounted for in my doses.
My medical oncologist was running late; he was on call for the adjacent hospital and had been consulted on an admission for a patient with a cancer-related emergency. The second volunteer came in at the time my appointment was supposed to start, saying that the doctor had called and he would be with me as soon as he could. The volunteer also told me that the beverage cart was here and offered to get my wife and I anything we wanted - once again, free of charge.
I just want to press pause on the narrative for a moment to explain what a big thing this personal touch really is and how the small cost of providing free coffee or tea for patients is really worth it in the long run. By not having to find my wallet or calculate if I had enough cash on hand to pay for coffee, I was freed of one small mundane decision that was worth a lot more than a buck or two for a coffee. By having the volunteer come and explain not only that my specialist was running late but why, he and by extension the entire system reinforced my value as a person. The doctor's time is valuable, but then as patient so is mine. I felt like I mattered, like the fact that I was required to wait was not normal or trivial. As a bonus, it also provided some distraction in case I was feeling anxious about my pending consultation.
My medical oncologist showed up a few minutes later, apologizing for being late. He was young and enthusiastic and it was immediately apparent that he knew the details of my case before entering the room. I had heard from colleagues that he was smart and very energetic - basically, that I was in good hands - and this assessment rang true as he went through the details of my diagnosis. The conversation was not as positive as we had hoped; he was a bit rushed (understandably) and seemed to want to hit specific points in a presentation. He spoke quickly and had an almost frantic energy, fidgeting with his pen at times. Some people might have been put off by this, but the fact is that he was clear and articulate and did listen to us when we asked a question or made a comment. He changed his approach at these times and made sure that I was aware of the resources available to me at any point through my journey. He made sure I had my information sheet and strongly encouraged me to call the nurse line, praising their knowledge and value as a patient resource before we started to talk about my therapeutic options.
I will describe my treatment in more detail in a separate blog post; for now I will focus on the information provided in general. My medical oncologist told me that for my site and type of cancer, adjuvant chemotherapy would significantly reduce the risk that a microscopic metastatic tumour had started elsewhere in my body. As I've already said (but I do like repeating myself), adenocarcinoma spreads through the bloodstream, the lymphatic system, and along nerves. My primary tumour had significant blood vessel involvement and the fact that pathology showed that I had the same adenocarcinoma in one lymph node meant that it was a virtual certainty that cancer cells had been circulating through my bloodstream for some time. The possibility that these cells had taken hold and might start to grow in my kidneys or my liver or my pancreas isn't exactly high, but there is a possibility that shouldn't be ignored.
So... yeah. Chemotherapy it is.
My medical oncologist also did a physical exam and explained that he was seeing me early and that normally I would see a radiation oncologist first, then if radiation was indicated I would see him to determine the best chemotherapy to go with it. He had already spoken to my radiation oncologist and they felt the I would probably benefit from radiation so he was operating on the assumption that I would get a combination of radiation and chemotherapy at first, then chemotherapy for the balance of six months after. He made sure all my questions were answered before I left; I definitely didn't get the impression he was watching the clock or trying to rush on to his next patient. We left and went on with our lives until the next lilypad - my consultation with the radiation oncologist.
We drove back across town the next day, paid for parking again, and repeated the check-in process. I was comfortable with where I was going this time so no volunteer was needed and we were moved into an exam room before my scheduled appointment time. The radiation oncologist was late, but this time nobody came to explain why. That was fine for us, but again I think if a different patient had more anxiety they might fixate on waiting and get even more keyed up before their appointment.
Room for improvement, I suppose.
My radiation oncologist was about ten minutes late, but any concern about that evaporated as soon as he walked into the exam room. He was warm, engaging, and made really good eye contact with both me and my wife. He seemed less well-informed about the details of my case at first, but it was quickly apparent that he knew a lot about my already-thick patient care record as he flipped directly to a pathology report or an MRI report to show us a specific detail about my care. He examined me as well and was much more fluid and interactive in our interview, adapting to our questions and comments seamlessly and with ease. He even joked with us about a couple of things which set both of us at ease. He took the time to show us my MRI and CT scans and answered some of the questions we had that arose based on the information presented so that we had an opportunity to understand the finer points of the therapeutic options we were facing.
He also explained that the only thing that radiation would offer me is a reduced chance of a recurrence of colorectal cancer. In his opinion, I have about a 10% chance of recurrence in five years, and with radiotherapy this would be reduced to 5%. While that only represents an absolute risk reduction of 5% (from 10% down to 5%), the important factor for me is that the reduction would only occur if I was in the 10% that would have a recurrence. If I was among the 90% that would not see a recurrence, the radiotherapy would pose the same risks but not offer any benefit as I wouldn't have a recurrence anyway. So for me, the relative risk reduction of 50% was a far more important number to consider. I have already written about the challenges of applying statistics to myself as an individual, and in the end my wife and I needed to make a judgement call regarding whether we felt like the risks of radiotherapy were outweighed by its potential benefits.
In the end, his calm and engaging approach gave us the confidence we needed to decide that radiotherapy was worth it. Short-term pain for potentially great long-term gain.
The decision to proceed with chemoradiation followed by chemotherapy has actually brought me peace. Don't get me wrong; I definitely don't welcome the adverse effects that both radiation and chemotherapy will bring with them. But my decision to respond aggressively to my diagnosis has already been made - I would not have undergone major surgery if I thought that the polyp removal during my colonoscopy had been 'good enough'.
As it turns out, it was. There was no trace of adenocarcinoma at the base of the polyp nor anywhere else in the rectal tissue removed. There was adenocarcinoma in one lymph node though. There could be more adenocarcinoma elsewhere in my body. I am now 56 years old; I see no reason why I shouldn't live another 30 years at least.
It's not quite time for me to jump to that next lilypad though. I still need another MRI before I can jump to the lilypad that involves chemoradiation, and I am at the hands of the Medical Imaging scheduling elves before that can happen. Once I get that piece of the puzzle, I will know which direction to jump.
For now, the view is quite lovely from where I am resting. No need to hop quite yet...
The British Columbia Cancer Agency - under its hip new moniker BC Cancer - is responsible for cancer research and treatment for the citizens of British Columbia. One of the province-wide components of the Provincial Health services Authority (PHSA), BC Cancer operates cancer treatment centres throughout the province. This still requires a lot of cancer patients to travel to see their specialists or get their treatments, but in my case my closest cancer clinic was across town from where I live. A half-hour drive - maybe up to an hour if the traffic is bad - is the only barrier between me and my care; all services, treatments, and investigations are fully funded by the province.
Well, everything except parking. Some people in this province get VERY upset that patients and their loved ones have to pay for parking, but in the grand scheme of things I can't really complain about paying less than three bucks every time I need to see my specialists or get treatment if nothing else is costing me a nickel.
Before my wife and I could pay for parking though, I had to fill out the nine page Patient-Reported Information and Symptom Measurement (PRISM) form that would start my medical chart with BC Cancer. I'd suggest you follow the link and look at the form; my only real complaint about it is that BC Cancer has not published this as a fillable PDF so I could type my reponses and print it out, requiring me to grab a quill and ink (or something equally old-timey and quaint) to scratch my barely legible responses on the page. The actual content of the form is broad and holistic and offers significant diversity of questions to capture a snapshot of who I am and how I am doing at this point in my journey.
Some of the questions actually made me think more about how I was really doing. I mean, physically I feel great, but there is still a lot to cope with emotionally and mentally and I suppose I haven't really paid much attention to that side of things up until now. In particular, the section on advance care planning caught my interest; advanced directives can be very polarizing based on people's faith and philosophy, but they also help the author of the directive to structure their wishes and then have a voice when loved ones may be called upon to speak on their behalf.
I have always been up-front with my kids about what my desires are should I become incapacitated and they are asked to make decisions about my care. I have done this because I want as much as possible to liberate them from any guilt or anxiety as they try to imagine what I might want, but the fact is that it is logistically almost impossible to enforce these unless the next of kin are aware of and in agreement with these wishes. That said, the BC government has published an Advance Care Planning Guide that can help to create a valid and concise representation agreement for future care.
Let me be clear here; I am not planning on dying. I mean, eventually I am, but not for thirty or forty years at least. I wanted to create a legally sound advance directive before I was diagnosed with cancer but life is always so busy that aside from the conversations with my kids I haven't actually done anything about it. Page 5 on the PRISM form not only brought that thought back into my consciousness, it offered me an opportunity to have someone from BC Cancer contact me to help me with the process.
That's pretty much the way BC Cancer operates. They seem to have significant personnel and volunteer resources to make the potentially terrifying prospect of dealing with cancer treatment less, well, terrifying. I presented to the reception desk and the person there stopped what they were doing immediately and gave me their full attention. He looked me up in the computer system and told me what clinic I would be going to, then called over a volunteer to take me on a short tour of the building and explain the process I would follow through each of my appointments. The volunteer was amazing; he was young but kind and patient and made sure that any questions we had were answered. He walked me to the waiting area for my appointment and told me another volunteer would call me when it was time for my appointment as he handed me a sheet with contact numbers and a form that I could fill out with information like what my diagnosis was and when my next appointment is scheduled. There was also a medication reconciliation form to edit; the volunteer explained that the doctor would go through it with me during my consultation.
I already knew that and as a pharmacist I already knew more about medication reconciliation than he would have guessed I could. It was still comforting to have someone care and take the time to make sure everything was explained to me.
Even the architecture of the local cancer clinic is soothing. I can't speak for all BC Cancer clinics but our local clinic is a modern, beautiful building that is consistent with West Coast architecture - lots of open spaces and glass to let in natural light, exposed wooden beams that architecturally echo the lush, rich forests of our rainforests, and stone wall trims and variegated tile floors that look almost exactly like the Vancouver Island granite that you see everywhere on our beautiful island.
A second volunteer came out to greet me a few minutes after I had sat down, introducing himself and apologizing that there was no peppermint tea available yet but that he could get some for me if I wanted. I'm slightly skeptical about how rigourous the science is behind it, but peppermint tea has been shown to have health benefits and contribute to relaxation so BC Cancer makes it freely available to patients and their caregivers. I declined, but the volunteer offered to check back when the beverage cart made its rounds to get me a coffee or tea if I wanted. I told him that would be nice as he led my wife and I into a comfortable exam room to wait for the medical oncologist.
Next up was an efficient but friendly health care aide (HCA) whose job it was to take my vital signs (after my surgery I am very comfortable with having my blood pressure, temperature, and heart rate recorded) as well as get an accurate height and weight as part of my care. Chemotherapy is almost always based on body surface area (BSA), and BSA is calculated by a combination of height and weight. It's important that those values be accurate so two HCAs independently measured my height and weight, agreeing on the values they got before they were entered on my chart. This same process will be followed at the start of each course of therapy for me so that any changes in weight and therefore BSA are accounted for in my doses.
My medical oncologist was running late; he was on call for the adjacent hospital and had been consulted on an admission for a patient with a cancer-related emergency. The second volunteer came in at the time my appointment was supposed to start, saying that the doctor had called and he would be with me as soon as he could. The volunteer also told me that the beverage cart was here and offered to get my wife and I anything we wanted - once again, free of charge.
I just want to press pause on the narrative for a moment to explain what a big thing this personal touch really is and how the small cost of providing free coffee or tea for patients is really worth it in the long run. By not having to find my wallet or calculate if I had enough cash on hand to pay for coffee, I was freed of one small mundane decision that was worth a lot more than a buck or two for a coffee. By having the volunteer come and explain not only that my specialist was running late but why, he and by extension the entire system reinforced my value as a person. The doctor's time is valuable, but then as patient so is mine. I felt like I mattered, like the fact that I was required to wait was not normal or trivial. As a bonus, it also provided some distraction in case I was feeling anxious about my pending consultation.
My medical oncologist showed up a few minutes later, apologizing for being late. He was young and enthusiastic and it was immediately apparent that he knew the details of my case before entering the room. I had heard from colleagues that he was smart and very energetic - basically, that I was in good hands - and this assessment rang true as he went through the details of my diagnosis. The conversation was not as positive as we had hoped; he was a bit rushed (understandably) and seemed to want to hit specific points in a presentation. He spoke quickly and had an almost frantic energy, fidgeting with his pen at times. Some people might have been put off by this, but the fact is that he was clear and articulate and did listen to us when we asked a question or made a comment. He changed his approach at these times and made sure that I was aware of the resources available to me at any point through my journey. He made sure I had my information sheet and strongly encouraged me to call the nurse line, praising their knowledge and value as a patient resource before we started to talk about my therapeutic options.
I will describe my treatment in more detail in a separate blog post; for now I will focus on the information provided in general. My medical oncologist told me that for my site and type of cancer, adjuvant chemotherapy would significantly reduce the risk that a microscopic metastatic tumour had started elsewhere in my body. As I've already said (but I do like repeating myself), adenocarcinoma spreads through the bloodstream, the lymphatic system, and along nerves. My primary tumour had significant blood vessel involvement and the fact that pathology showed that I had the same adenocarcinoma in one lymph node meant that it was a virtual certainty that cancer cells had been circulating through my bloodstream for some time. The possibility that these cells had taken hold and might start to grow in my kidneys or my liver or my pancreas isn't exactly high, but there is a possibility that shouldn't be ignored.
So... yeah. Chemotherapy it is.
My medical oncologist also did a physical exam and explained that he was seeing me early and that normally I would see a radiation oncologist first, then if radiation was indicated I would see him to determine the best chemotherapy to go with it. He had already spoken to my radiation oncologist and they felt the I would probably benefit from radiation so he was operating on the assumption that I would get a combination of radiation and chemotherapy at first, then chemotherapy for the balance of six months after. He made sure all my questions were answered before I left; I definitely didn't get the impression he was watching the clock or trying to rush on to his next patient. We left and went on with our lives until the next lilypad - my consultation with the radiation oncologist.
We drove back across town the next day, paid for parking again, and repeated the check-in process. I was comfortable with where I was going this time so no volunteer was needed and we were moved into an exam room before my scheduled appointment time. The radiation oncologist was late, but this time nobody came to explain why. That was fine for us, but again I think if a different patient had more anxiety they might fixate on waiting and get even more keyed up before their appointment.
Room for improvement, I suppose.
My radiation oncologist was about ten minutes late, but any concern about that evaporated as soon as he walked into the exam room. He was warm, engaging, and made really good eye contact with both me and my wife. He seemed less well-informed about the details of my case at first, but it was quickly apparent that he knew a lot about my already-thick patient care record as he flipped directly to a pathology report or an MRI report to show us a specific detail about my care. He examined me as well and was much more fluid and interactive in our interview, adapting to our questions and comments seamlessly and with ease. He even joked with us about a couple of things which set both of us at ease. He took the time to show us my MRI and CT scans and answered some of the questions we had that arose based on the information presented so that we had an opportunity to understand the finer points of the therapeutic options we were facing.
He also explained that the only thing that radiation would offer me is a reduced chance of a recurrence of colorectal cancer. In his opinion, I have about a 10% chance of recurrence in five years, and with radiotherapy this would be reduced to 5%. While that only represents an absolute risk reduction of 5% (from 10% down to 5%), the important factor for me is that the reduction would only occur if I was in the 10% that would have a recurrence. If I was among the 90% that would not see a recurrence, the radiotherapy would pose the same risks but not offer any benefit as I wouldn't have a recurrence anyway. So for me, the relative risk reduction of 50% was a far more important number to consider. I have already written about the challenges of applying statistics to myself as an individual, and in the end my wife and I needed to make a judgement call regarding whether we felt like the risks of radiotherapy were outweighed by its potential benefits.
In the end, his calm and engaging approach gave us the confidence we needed to decide that radiotherapy was worth it. Short-term pain for potentially great long-term gain.
The decision to proceed with chemoradiation followed by chemotherapy has actually brought me peace. Don't get me wrong; I definitely don't welcome the adverse effects that both radiation and chemotherapy will bring with them. But my decision to respond aggressively to my diagnosis has already been made - I would not have undergone major surgery if I thought that the polyp removal during my colonoscopy had been 'good enough'.
As it turns out, it was. There was no trace of adenocarcinoma at the base of the polyp nor anywhere else in the rectal tissue removed. There was adenocarcinoma in one lymph node though. There could be more adenocarcinoma elsewhere in my body. I am now 56 years old; I see no reason why I shouldn't live another 30 years at least.
It's not quite time for me to jump to that next lilypad though. I still need another MRI before I can jump to the lilypad that involves chemoradiation, and I am at the hands of the Medical Imaging scheduling elves before that can happen. Once I get that piece of the puzzle, I will know which direction to jump.
For now, the view is quite lovely from where I am resting. No need to hop quite yet...
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