This is where the planet was when I emerged...
Fifty years ago yesterday I made a telephone call.
Phone calls were a big deal half a century ago. I lived in a home with my two sisters, my mom and my dad, one aunt, and my grandmother and grandfather. We had one phone.
Just one.
Seven people, with one phone. It had its own table and when it rang it was answered, always after the second ring. Getting a phone call was important.
Making a call was no easy task either. In order to call someone, I had to remember seven numbers, putting my finger in the hole of a heavy metal ring and spinning it clockwise until my finger hit another heavy metal stop for each one, then letting go so the ring would spin back to its starting position. Dialling a phone number took time. It was hard work. When you made a call, the ceremony of making that call heightened the importance.
So why was I making this phone call if it was so much work? And why do I remember making one phone call fifty years ago? Simple - it was my birthday and I was calling my great-grandmother to tell her. I can still remember her voice.
"Hello?"
Of course she answered after the second ring.
"Hello great grandma! I'm six today!" My voice fifty years ago must have lacked the timbre and gravitas it has today; my great-grandmother didn't quite understand what I was saying.
"What's that? You're sick today?"
To be fair, not only was my voice undeveloped but the telephone system of the 60s was not exactly the technological marvel that it is today. Add to that the fact that my grandmother was probably eighty years older than me (I honestly don't know how old she was at the time) so her hearing wasn't the best and the misunderstanding is not really surprising.
Full disclosure: I was not sick. Not then, and not now, fifty years later.
I mean, I have cancer, but I'm not sick. At least, I don't feel sick. And that's what makes the next lilypad on my journey a little confusing.
It's four weeks since I underwent life-altering major surgery as what was supposed to be a cure for my colorectal cancer. I injected my last dose of dalteparin - a blood thinner to prevent a DVT - this morning. My appetite is coming back. I have an appointment with my GP today and the most important takeaway will be whether I can resume normal activities like going to the gym or driving or lifting my slightly overweight miniature dachshund.
My life is getting back to normal. I'm still weaker than I was before surgery and I've lost about 7kg since the day of my surgery. I have no sensation on my lower abdomen about 2.5 cm on either side of my healing incision and I'm still trying to figure out what I can eat, how much and when, but my life is becoming more normal again. That was the plan after surgery; 4-6 weeks of reduced activity and gradual recovery before resuming a normal life. But life with cancer will never be what my life without cancer was. It's never going to be the same normal that it was, and fifty years after my great-grandmother asked me if I was sick I am forced to address the issue again.
Am I sick?
Different is not wrong. I used to eat a lot of fresh fruits and raw vegetables, but for the past four weeks I haven't been able to eat any. That's not wrong, but it is definitely different. I haven't eaten red meat for four weeks - just chicken and fish and some ground turkey. That's not even that different than my diet before surgery and it's still not wrong. I used to eat oatmeal every morning, but now I can only tolerate 1/4 the serving size of oatmeal and even then only about three days a week. That's not wrong either, but I've had to learn what I can and cannot tolerate and develop a new diet to match. I can't eat much after seven at night or I am up overnight with cramps and... well, let's just describe them as other needs. It's not wrong, but it is very different than the way my life used to be.
All of these things will or at least may change. I will be able to go back to the gym, to start driving and flying again and eventually even ride my motorcycle, and will eventually even be able to lift my dachshund. My diet may normalize. I may not ever be able to tolerate red meat in any quantity and I may have to limit the amount of raw fruit and vegetables in my diet because of my altered rectal anatomy. If my bowel habit doesn't return to what it was after a year, it probably never will. But after a year of eating a certain way, that diet becomes normal. And I like normal - it's sort of a goal for me.
So everything is great, right? Well... not exactly. Because as I said in my last blog post, the pathology results from my surgery showed there was cancer in one lymph node. Just one out of twenty-five - 4%. And maybe that was the only lymph node in my body that had cancer growing in it. Maybe... but what if it wasn't. The sample size is small, but what if that 4% is extended across all the lymph nodes in my body?
In case you didn't know, there are between 500 and 700 lymph nodes in the body. At 4%, that could mean that there are another 20 to 28 cancerous nodes in my body. That is simply not acceptable, and so I am now preparing to live a very not normal life to deal with that. In a few days I have my first consultations with my oncologists.
Oncologists. Plural.
I now have a medical oncologist and a radiation oncologist on my care team. These two specialists are added to my gastroenterologist and surgeon, as well as the dermatologist I see for my rosacea and of course my GP. That's a lot of doctors for someone who considered himself very healthy just four weeks ago.
It's still too early to know what treatment regimen these oncologists will propose to deal with the possibility that there is more cancer lurking somewhere else in my body. Oncology is not my area of expertise, but I have reviewed the most likely protocols for rectal cancer and it's reasonable for me to assume that I will be taking oral chemotherapy for the next six months and I may also have radiation blasted into my pelvis one week of the month.
That is definitely not normal. But again, is it wrong?
The chemotherapy will have adverse effects - they all do. The most likely candidate for my type of cancer is capecitabine and the most likely adverse effects with it are stomatitis, nausea, and loss of appetite. Well, I've been dealing with loss of appetite for the past four weeks, so if I have to deal with it for six months, I guess I can do that. Nausea and stomatitis can be treated, so that's not the worst thing in the world either. Pelvic radiotherapy can cause diarrhea and bladder irritation, but it's not certain that I will be undergoing radiotherapy and if I do my specialist will adjust the dose of radiation based on my response to minimize adverse effects if they occur.
I'm not on that lilypad yet though. I'm on a lilypad where my life is normal - at least momentarily. I'm going to enjoy that, even if it's just for a few days. Or even just for today.
Ultimately that's all we know we will get. Just today, and today is always normal when you look at it on its own. It only becomes abnormal when you compare it to yesterday or tomorrow.
Or fifty years ago.
My great-grandmother has been gone for most of the past fifty years, but when I called her on the phone that March morning in 1969, her life was normal. My life was normal, but my life now is obviously very different from the way it was then. In a similar way, my life today is very different than the way it was a month ago or a year ago, but it can still be normal - at least for today.
I always knew that 2019 was going to be a sucky year for me, health-wise. I was always strong and devoted to doing what was needed to overcome my diagnosis and that hasn't changed. Chemotherapy... radiotherapy... of course I don't want to undergo them. But they're not wrong. They will be my normal for a while, and then six months from now they will be part of my past medical history and not part of my normal then.
I don't expect to get a phone call from my great-grandson in fifty years. I'm not even sure what a phone call would be like then, and I'm pretty sure that I don't really want to still be writing a blog at 106 years old so even if I did you won't read about it. That's not going to be my normal then.
But today, this is my normal. I will embrace it.
PS - my son showed me the cartoon I included above on my birthday and it made me smile. There's so much I love about the sociological commentary it makes, plus it's ADORABLE! I hope it brings a smile to your face like it did to mine.
Phone calls were a big deal half a century ago. I lived in a home with my two sisters, my mom and my dad, one aunt, and my grandmother and grandfather. We had one phone.
Just one.
Seven people, with one phone. It had its own table and when it rang it was answered, always after the second ring. Getting a phone call was important.
Making a call was no easy task either. In order to call someone, I had to remember seven numbers, putting my finger in the hole of a heavy metal ring and spinning it clockwise until my finger hit another heavy metal stop for each one, then letting go so the ring would spin back to its starting position. Dialling a phone number took time. It was hard work. When you made a call, the ceremony of making that call heightened the importance.
So why was I making this phone call if it was so much work? And why do I remember making one phone call fifty years ago? Simple - it was my birthday and I was calling my great-grandmother to tell her. I can still remember her voice.
 |
| This is so funny it almost hurts. |
Of course she answered after the second ring.
"Hello great grandma! I'm six today!" My voice fifty years ago must have lacked the timbre and gravitas it has today; my great-grandmother didn't quite understand what I was saying.
"What's that? You're sick today?"
To be fair, not only was my voice undeveloped but the telephone system of the 60s was not exactly the technological marvel that it is today. Add to that the fact that my grandmother was probably eighty years older than me (I honestly don't know how old she was at the time) so her hearing wasn't the best and the misunderstanding is not really surprising.
Full disclosure: I was not sick. Not then, and not now, fifty years later.
I mean, I have cancer, but I'm not sick. At least, I don't feel sick. And that's what makes the next lilypad on my journey a little confusing.
It's four weeks since I underwent life-altering major surgery as what was supposed to be a cure for my colorectal cancer. I injected my last dose of dalteparin - a blood thinner to prevent a DVT - this morning. My appetite is coming back. I have an appointment with my GP today and the most important takeaway will be whether I can resume normal activities like going to the gym or driving or lifting my slightly overweight miniature dachshund.
My life is getting back to normal. I'm still weaker than I was before surgery and I've lost about 7kg since the day of my surgery. I have no sensation on my lower abdomen about 2.5 cm on either side of my healing incision and I'm still trying to figure out what I can eat, how much and when, but my life is becoming more normal again. That was the plan after surgery; 4-6 weeks of reduced activity and gradual recovery before resuming a normal life. But life with cancer will never be what my life without cancer was. It's never going to be the same normal that it was, and fifty years after my great-grandmother asked me if I was sick I am forced to address the issue again.
Am I sick?
Different is not wrong. I used to eat a lot of fresh fruits and raw vegetables, but for the past four weeks I haven't been able to eat any. That's not wrong, but it is definitely different. I haven't eaten red meat for four weeks - just chicken and fish and some ground turkey. That's not even that different than my diet before surgery and it's still not wrong. I used to eat oatmeal every morning, but now I can only tolerate 1/4 the serving size of oatmeal and even then only about three days a week. That's not wrong either, but I've had to learn what I can and cannot tolerate and develop a new diet to match. I can't eat much after seven at night or I am up overnight with cramps and... well, let's just describe them as other needs. It's not wrong, but it is very different than the way my life used to be.
All of these things will or at least may change. I will be able to go back to the gym, to start driving and flying again and eventually even ride my motorcycle, and will eventually even be able to lift my dachshund. My diet may normalize. I may not ever be able to tolerate red meat in any quantity and I may have to limit the amount of raw fruit and vegetables in my diet because of my altered rectal anatomy. If my bowel habit doesn't return to what it was after a year, it probably never will. But after a year of eating a certain way, that diet becomes normal. And I like normal - it's sort of a goal for me.
So everything is great, right? Well... not exactly. Because as I said in my last blog post, the pathology results from my surgery showed there was cancer in one lymph node. Just one out of twenty-five - 4%. And maybe that was the only lymph node in my body that had cancer growing in it. Maybe... but what if it wasn't. The sample size is small, but what if that 4% is extended across all the lymph nodes in my body?
In case you didn't know, there are between 500 and 700 lymph nodes in the body. At 4%, that could mean that there are another 20 to 28 cancerous nodes in my body. That is simply not acceptable, and so I am now preparing to live a very not normal life to deal with that. In a few days I have my first consultations with my oncologists.
Oncologists. Plural.
I now have a medical oncologist and a radiation oncologist on my care team. These two specialists are added to my gastroenterologist and surgeon, as well as the dermatologist I see for my rosacea and of course my GP. That's a lot of doctors for someone who considered himself very healthy just four weeks ago.
It's still too early to know what treatment regimen these oncologists will propose to deal with the possibility that there is more cancer lurking somewhere else in my body. Oncology is not my area of expertise, but I have reviewed the most likely protocols for rectal cancer and it's reasonable for me to assume that I will be taking oral chemotherapy for the next six months and I may also have radiation blasted into my pelvis one week of the month.
That is definitely not normal. But again, is it wrong?
The chemotherapy will have adverse effects - they all do. The most likely candidate for my type of cancer is capecitabine and the most likely adverse effects with it are stomatitis, nausea, and loss of appetite. Well, I've been dealing with loss of appetite for the past four weeks, so if I have to deal with it for six months, I guess I can do that. Nausea and stomatitis can be treated, so that's not the worst thing in the world either. Pelvic radiotherapy can cause diarrhea and bladder irritation, but it's not certain that I will be undergoing radiotherapy and if I do my specialist will adjust the dose of radiation based on my response to minimize adverse effects if they occur.
I'm not on that lilypad yet though. I'm on a lilypad where my life is normal - at least momentarily. I'm going to enjoy that, even if it's just for a few days. Or even just for today.
Ultimately that's all we know we will get. Just today, and today is always normal when you look at it on its own. It only becomes abnormal when you compare it to yesterday or tomorrow.
Or fifty years ago.
My great-grandmother has been gone for most of the past fifty years, but when I called her on the phone that March morning in 1969, her life was normal. My life was normal, but my life now is obviously very different from the way it was then. In a similar way, my life today is very different than the way it was a month ago or a year ago, but it can still be normal - at least for today.
I always knew that 2019 was going to be a sucky year for me, health-wise. I was always strong and devoted to doing what was needed to overcome my diagnosis and that hasn't changed. Chemotherapy... radiotherapy... of course I don't want to undergo them. But they're not wrong. They will be my normal for a while, and then six months from now they will be part of my past medical history and not part of my normal then.
I don't expect to get a phone call from my great-grandson in fifty years. I'm not even sure what a phone call would be like then, and I'm pretty sure that I don't really want to still be writing a blog at 106 years old so even if I did you won't read about it. That's not going to be my normal then.
But today, this is my normal. I will embrace it.
PS - my son showed me the cartoon I included above on my birthday and it made me smile. There's so much I love about the sociological commentary it makes, plus it's ADORABLE! I hope it brings a smile to your face like it did to mine.
Comments
Post a Comment