What's normal anyway?
I dropped by my place of work yesterday. I had to get some bloodwork drawn before I start my next round of chemotherapy and it's better for my oncologists if I get it drawn at the hospital, so after waiting half an hour for a two minute draw I headed down to "the dungeon" to see my friends and co-workers.
It was wonderful.
Everyone was happy to see me, I got a bunch of well wishes and wonderful, therapeutic hugs, and I got to catch up on who had started and who had left in the two months since I was last in the department. For a few minutes at least, I felt like I was living my previous life - my life before cancer. Then the questions started.
"How are you doing?"
"When are you coming back?"
"So... what happens next?"
The people I work with are all amazing, caring people. Sure, some of them have some rough edges and occasionally they squabble like children, but that's only because they are human beings and therefore not perfect. They are still filled with compassion and love and they naturally turned that compassion towards someone they care about - me. It's not their fault that by asking those questions they brought me back to a world where I not only have cancer, I'm about to jump to another lilypad as I start a new treatment.
My answers may have sounded rehearsed to my friends. To be fair, I have answered those questions many times already so it's only natural that my responses have been polished with repetition.
How am I doing?
"I'm doing great. I've pretty much healed from the minor radiation burns I got and am learning what I can and can't eat now". This generally results in follow-on questions about where the radiation burns were and how bad they were. They were on my butt, right at the top of the crease between my buttocks and they weren't bad but there was some skin breakdown right in the middle of the crease. They were about a second to third degree burn - some blistering and minor skin damage. It's all healed now though.
When am I coming back?
"My next course of chemo starts next week and will last about four and a half months. I will be done around the end of October but I still can't tell when I will be able to work after that. I've just got to take things one step at a time right now." The next round of chemo I will get is more aggressive than the chemo that I got with my radiation. I handled that chemo well and I'm generally fit and healthy - aside from cancer and a bit of rosacea - so there's every reason to believe that I will handle this course of chemo better than most patients do. But here's the thing; this chemo is fairly intense.
It's not the most extreme type of chemotherapy out there. I won't lose my hair and this is only fairly likely to make me puke. I can think of a handful of regimens that would be much worse than the oxaliplatin/leucovorin/fluorouracil that I will receive, but I can also think of a bunch that are not as bad as it is. Honestly, even as optimistic as I am it would be foolish for me to think that I can go through this chemo and not have any adverse effects. My doctors will aggressively prevent any vomiting (it's no longer considered acceptable to react to vomiting with chemotherapy as a standard of practice), but it's pretty likely that I will not have a lot of energy or stamina during my treatment. And I don't know how long that will last afterwards either, so I can't predict when I will be physically able to get back to work, let alone mentally or emotionally ready.
Nope - too much water has to pass under the bridge before I can answer that question with any certainty.
What's next for me?
"Well, I see my oncologist again and then get my central line inserted in a few days. Next week I will go in for my first course of chemo. Then I will fall into the regimen of going for regular bloodwork, monitoring any signs and symptoms of infection or nausea or other adverse effects, caring for my central line, and most importantly caring for myself."
This is a huge subject and I don;t go into all the details with people because I honestly don;t have all the details yet. It's all probably best to cover that in a separate post once I actually start my treatments.
So... what's normal anyway?
The past few weeks have felt pretty normal for me. I didn't have any medical appointments or issues that needed attention, I've had a decent amount of energy and strength, and I've been able to eat and poop in a manner that I now consider normal. I've gone to the gym and gone out shopping and gotten back into writing for the enjoyment of writing (the previous exception being this blog). I've even had the chance to fly back to my home town to see my family.
This window of opportunity sort of came up out of the blue and I jumped at the chance. It was wonderful to see everyone and from a very selfish perspective it felt good to show them that I was doing well. I'd be lying if I said that it wasn't hard though. As good as I am feeling, I still didn't have nearly the energy I normally would on such a trip. I really couldn't eat as much or as many things as I normally would have - my digestive tract just can't handle it yet. And I had one episode of vomiting (which was very weird, coming out of nowhere and then disappearing as quickly as it arrived) and a few episodes of dizziness, probably due to low blood pressure (I normally have a lower resting heart rate and low blood pressure so this isn't really a cause for much concern).
Well, that's not normal. Is it?
Objectively, and from a physiologic perspective - no, these things were not normal. But what was normal about this visit was the more important stuff - the subjective stuff that makes time spent with the people that matter in your life rewarding.
Like playing with my great niece and great nephews. Seeing their smiling faces and hearing their infectious laughter. Hugging my family. Talking with my sisters. Teasing my sisters. Laughing at the jokes and antics of my nieces and nephew. Letting my mother remind me that I'm still her little boy and basking in that simple love. Talking with one of the best friends anyone could ever hope to have about things both important and inconsequential. These things were very normal.
I wouldn't have traded the opportunity to see my family for almost anything. As long as it didn't actively endanger me, I was going to go. And I'm glad that I did, because it helps me to feel normal.
It would be really easy to focus on the things that I've lost or the things that have changed since my diagnosis. It would also be easy to give in to fear about the treatment I am starting next week. And I'll admit that there are times that I feel sorry for myself, and I always wish that I hadn't been diagnosed with cancer six months ago. The logical, analytical part of me looks at the changes in my anatomy and in the reality of my diet and poop log (yes, I actually keep one of those. Don't ask me to share it because you know that I will.) and comes to the careful and measured conclusion that my life has changed and there's a very good chance that it will not ever be the same as it was before I was diagnosed.
And that's a good thing.
Being diagnosed with cancer really ought to shake up one's world. It ought to bring into sharp focus the things that matter and cut away the things that don't. So while my life has undeniably changed and while there are, admittedly, a bunch of downsides to my life now that didn't exist six months ago, it doesn't mean that my life is not normal.
It is. It's just that my definition of normal has changed.
In the medical community we often talk about a new normal for a patient who has undergone something major. Maybe they have had surgery and have to learn to manage with some new device or apparatus. Maybe their diet has changed or their ability to interact with the world has been altered. This new normal represents an opportunity for that patient to live their best life moving forward, to achieve the highest quality of life possible under their unique circumstances. But this concept is not limited to people who have had hip surgery or now have a colostomy.
We all undergo major changes in our lives. Maybe a long-term relationship dissolves, leaving us struggling to learn to cope without that person. Maybe a loved one passes away, expectedly or suddenly. There's never a good time for a loved one to leave us, but we have to learn to cope anyway. Maybe we lose a job or get in a car accident or some investment tanks and we lose money we were planning on using in retirement. These bumps in the road are just part of life, and each time we hit one we have to learn to cope with a new normal.
So that's where I am - in my new normal. And you know what?
I think it's just fine.
Normal is what we decide it is. It is highly fluid and highly subjective and highly contextual. I get it if someone looks at my life with cancer and judges that my life isn't normal, but for me I think it is. And despite the bloodwork and the central lines and the medications to make me poop and keep me from pooping and keeping a diary of all of that literal crap, my life is really good. Because I have all of those angels in it - like my friends and family and co-workers - reminding me that there are more important things than protocols and dressings and absolute neutrophil counts.
I've just got this one life to live. I'm going to make the best of it!
It was wonderful.
Everyone was happy to see me, I got a bunch of well wishes and wonderful, therapeutic hugs, and I got to catch up on who had started and who had left in the two months since I was last in the department. For a few minutes at least, I felt like I was living my previous life - my life before cancer. Then the questions started.
"How are you doing?"
"When are you coming back?"
"So... what happens next?"
The people I work with are all amazing, caring people. Sure, some of them have some rough edges and occasionally they squabble like children, but that's only because they are human beings and therefore not perfect. They are still filled with compassion and love and they naturally turned that compassion towards someone they care about - me. It's not their fault that by asking those questions they brought me back to a world where I not only have cancer, I'm about to jump to another lilypad as I start a new treatment.
My answers may have sounded rehearsed to my friends. To be fair, I have answered those questions many times already so it's only natural that my responses have been polished with repetition.
How am I doing?
"I'm doing great. I've pretty much healed from the minor radiation burns I got and am learning what I can and can't eat now". This generally results in follow-on questions about where the radiation burns were and how bad they were. They were on my butt, right at the top of the crease between my buttocks and they weren't bad but there was some skin breakdown right in the middle of the crease. They were about a second to third degree burn - some blistering and minor skin damage. It's all healed now though.
When am I coming back?
"My next course of chemo starts next week and will last about four and a half months. I will be done around the end of October but I still can't tell when I will be able to work after that. I've just got to take things one step at a time right now." The next round of chemo I will get is more aggressive than the chemo that I got with my radiation. I handled that chemo well and I'm generally fit and healthy - aside from cancer and a bit of rosacea - so there's every reason to believe that I will handle this course of chemo better than most patients do. But here's the thing; this chemo is fairly intense.
It's not the most extreme type of chemotherapy out there. I won't lose my hair and this is only fairly likely to make me puke. I can think of a handful of regimens that would be much worse than the oxaliplatin/leucovorin/fluorouracil that I will receive, but I can also think of a bunch that are not as bad as it is. Honestly, even as optimistic as I am it would be foolish for me to think that I can go through this chemo and not have any adverse effects. My doctors will aggressively prevent any vomiting (it's no longer considered acceptable to react to vomiting with chemotherapy as a standard of practice), but it's pretty likely that I will not have a lot of energy or stamina during my treatment. And I don't know how long that will last afterwards either, so I can't predict when I will be physically able to get back to work, let alone mentally or emotionally ready.
Nope - too much water has to pass under the bridge before I can answer that question with any certainty.
What's next for me?
"Well, I see my oncologist again and then get my central line inserted in a few days. Next week I will go in for my first course of chemo. Then I will fall into the regimen of going for regular bloodwork, monitoring any signs and symptoms of infection or nausea or other adverse effects, caring for my central line, and most importantly caring for myself."
This is a huge subject and I don;t go into all the details with people because I honestly don;t have all the details yet. It's all probably best to cover that in a separate post once I actually start my treatments.
So... what's normal anyway?
The past few weeks have felt pretty normal for me. I didn't have any medical appointments or issues that needed attention, I've had a decent amount of energy and strength, and I've been able to eat and poop in a manner that I now consider normal. I've gone to the gym and gone out shopping and gotten back into writing for the enjoyment of writing (the previous exception being this blog). I've even had the chance to fly back to my home town to see my family.
This window of opportunity sort of came up out of the blue and I jumped at the chance. It was wonderful to see everyone and from a very selfish perspective it felt good to show them that I was doing well. I'd be lying if I said that it wasn't hard though. As good as I am feeling, I still didn't have nearly the energy I normally would on such a trip. I really couldn't eat as much or as many things as I normally would have - my digestive tract just can't handle it yet. And I had one episode of vomiting (which was very weird, coming out of nowhere and then disappearing as quickly as it arrived) and a few episodes of dizziness, probably due to low blood pressure (I normally have a lower resting heart rate and low blood pressure so this isn't really a cause for much concern).
Well, that's not normal. Is it?
Objectively, and from a physiologic perspective - no, these things were not normal. But what was normal about this visit was the more important stuff - the subjective stuff that makes time spent with the people that matter in your life rewarding.
Like playing with my great niece and great nephews. Seeing their smiling faces and hearing their infectious laughter. Hugging my family. Talking with my sisters. Teasing my sisters. Laughing at the jokes and antics of my nieces and nephew. Letting my mother remind me that I'm still her little boy and basking in that simple love. Talking with one of the best friends anyone could ever hope to have about things both important and inconsequential. These things were very normal.
I wouldn't have traded the opportunity to see my family for almost anything. As long as it didn't actively endanger me, I was going to go. And I'm glad that I did, because it helps me to feel normal.
It would be really easy to focus on the things that I've lost or the things that have changed since my diagnosis. It would also be easy to give in to fear about the treatment I am starting next week. And I'll admit that there are times that I feel sorry for myself, and I always wish that I hadn't been diagnosed with cancer six months ago. The logical, analytical part of me looks at the changes in my anatomy and in the reality of my diet and poop log (yes, I actually keep one of those. Don't ask me to share it because you know that I will.) and comes to the careful and measured conclusion that my life has changed and there's a very good chance that it will not ever be the same as it was before I was diagnosed.
And that's a good thing.
Being diagnosed with cancer really ought to shake up one's world. It ought to bring into sharp focus the things that matter and cut away the things that don't. So while my life has undeniably changed and while there are, admittedly, a bunch of downsides to my life now that didn't exist six months ago, it doesn't mean that my life is not normal.
It is. It's just that my definition of normal has changed.
In the medical community we often talk about a new normal for a patient who has undergone something major. Maybe they have had surgery and have to learn to manage with some new device or apparatus. Maybe their diet has changed or their ability to interact with the world has been altered. This new normal represents an opportunity for that patient to live their best life moving forward, to achieve the highest quality of life possible under their unique circumstances. But this concept is not limited to people who have had hip surgery or now have a colostomy.
We all undergo major changes in our lives. Maybe a long-term relationship dissolves, leaving us struggling to learn to cope without that person. Maybe a loved one passes away, expectedly or suddenly. There's never a good time for a loved one to leave us, but we have to learn to cope anyway. Maybe we lose a job or get in a car accident or some investment tanks and we lose money we were planning on using in retirement. These bumps in the road are just part of life, and each time we hit one we have to learn to cope with a new normal.
So that's where I am - in my new normal. And you know what?
I think it's just fine.
Normal is what we decide it is. It is highly fluid and highly subjective and highly contextual. I get it if someone looks at my life with cancer and judges that my life isn't normal, but for me I think it is. And despite the bloodwork and the central lines and the medications to make me poop and keep me from pooping and keeping a diary of all of that literal crap, my life is really good. Because I have all of those angels in it - like my friends and family and co-workers - reminding me that there are more important things than protocols and dressings and absolute neutrophil counts.
I've just got this one life to live. I'm going to make the best of it!
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