Journal entry by David Hicks —
My post last Thursday became very dated, very fast. There are two major updates I need to give you that dramatically reframe what I'd written.
But first--like a YouTube commercial--I need to interject with a PSA regarding my disease. I've been wanting to do this for some time but the updates have just been too personal for it to ever make sense. So, gimme a second, let me do some quick awareness raising, and then I'll flip back to outlining the quietly dramatic rollercoaster that my life has become.
Young Onset Colon Cancer
The phrase "we need to start talking about _____" is starting to nauseate me (we need to start talking about the lack of organic lettuce on McDonald's burgers! It's unjust!!) but, my God, we really do need to start talking about young onset colorectal cancer [CRC]. Why? Because it is killing young people (defined here as under the age of 50). And it has been, with steadily increasing frequency, since 1994.
Here's the current state of things: each year colonoscopies are protecting older patients from the devastating effects of CRC; consequentially, in the aggregate, it looks like we are "winning the fight" against this cancer. But meanwhile, more and more young people are showing up in their doctors' office with symptoms--like blood in the stool--asking what is going on. Doctors aren't generally trained to think "colon cancer" when they see a young patient with a bloody stool so it usually takes a while for the young patient to get scheduled for a colonoscopy. Even if the colonoscopy was quickly scheduled, though, it might not be a huge help because by the time you are symptomatic, the cancer is usually at an advanced stage. This is basically my story, and it is very similar to other young patients I've met over these past two years.
Why are more young people being diagnosed with CRC? That's the money question. And no institution that I'm aware of is directing serious resources towards answering it. The general consensus is that it's something in our environment--that could be antibiotics in our food or something otherwise dietary. No one knows, but we should, because many experts estimate that by 2030, 10% of all colon cancers and 22% of rectal cancers will occur in young patients. Without knowing which young people to target for early screenings (you can't just start sticking probes up every 18 year old's butt--it's a horrible birthday gift and, while we might be a progressive society, I don't think we're yet that progressive), we won't know how to find those patients and they, like young patients today, will be far more likely to face advanced disease and a much heightened likelihood of death. If we know the cause, we can find the young patients, screen them, and likely prevent their deaths.
Last thing: The age at which people are being diagnosed with CRC seems to be falling each year. I heard a story this week about a 13 year old who was diagnosed with Stage IV colon cancer. That is absurd. And I've heard about similar cases. Currently in the United States, about 20,000 patients between ages 15-39 are diagnosed with CRC each year; ~4,000 of them will die. That number will keep climbing, and the statistical lower bound will keep falling (ages 11-39?) until we get serious about this. If I die of this very preventable disease, I hope that someone who reads this will carry the message forward. It's a cause that could truly save so many lives.
There is so much more I could say but we've reached the point of nearly two YouTube commercial's worth of interruption. No one likes that. I apologize. Back to the updates.
The Weekend
I had my third out of four rounds of chemo this past Friday. Before I begin my infusions, I go over the basics with my doctor--how are my blood levels, have we seen any improvement in key metrics, what side effects did I have these past two weeks and what could I expect these next two weeks, etc. These meetings take place in a cramped office and, this Friday, that office included my doctor, my Dad, and me.
I've been frustrated because my chemo hasn't seemed to be working. Here's the basic rundown: the entire purpose of this chemo has been to reduce my bilirubin levels. A healthy person usually has a level around 1-2. Under 10% of the population--including myself--has a harmless condition called Gilbert's Syndrome, which means we have heightened bilirubin levels. For us, a "normal" level is ~3.
For months my bilirubin has hovered around 10. When I started chemo, it went up, not down. (On Friday, I learned that it had climbed to 20....wrong way). The vast majority of clinical trials, promising chemotherapies and procedures require that your bilirubin level be near normal. So, with only one round of this chemo left, it made sense for me to start asking about next steps.
"Doctor, what's our backup plan if these last two rounds of chemo can't normalize my bilirubin?"
She got quiet and I quickly interjected with an alternative I'd heard a lot about.
"I heard there's a way we could place an external drain [e.g., tubes coming out of my chest] so that I can manually drain the bilirubin each night? Is that a possibility?"
Then she turned to me and my Dad and started explaining.
"We looked at the external drain idea before starting chemo and it was impossible. Your scans from the past several months show no targets--there is no bile duct wide enough for us to actually insert a tube into it, so there's no way we could place a drain. If this chemo doesn't work and an external drain is still impossible, then we need to start talking about hospice and end of life care."
------
There's no "good time" to start an end of life conversation, but I sure as hell didn't expect it to happen last Friday. I'm generally cautious about the questions I ask (ask scary questions, get scary answers) but I totally tripped into that one. I was floored. My doctor began a Hospice 101 discussion and everything slowly started to set in.....in one month, when chemo finished, this journey might be done. That felt impossible. My health journey has been atrocious--all I've accumulated are weird scars, some painful and long-lasting side effects, trauma across the board, and an Olympic number of hours in the hard-backed chairs of hospital waiting rooms. But there has always been a backup plan. To suddenly hit that point where all the cards were dealt--all my losses collected--hit me like a truck.
My doctor then added: "There's a real possibility you stop breathing at some point over these next few weeks. If that happens, my professional and personal recommendation is that you not be resuscitated. That would be the cancer's way of really overtaking you and, if you were resuscitated, you could be left with a very low quality and shortened life. I think there's a lot to be said for dying with dignity if you find yourself in that situation."
-----
So that's what I was doing around Friday lunchtime, EST. For time's sake, I'll skip some details--like how my Dad and I asked the doctor to leave us alone in the room after the conversation so we could do some much needed weeping. The rest of the day, though, was "normal". I went to chemo, where the nurse asked me the usual questions (Q. Are you feeling down, dejected, or not hopeful for the future? A. You could call it that, sure.) And then I went home and cried again with my family and our close friends. We spent the weekend together, enjoying each other, crying a lot, trying to think through how we best wanted to move through what seemed to be the beginning of my final days.
Monday
I was experiencing many of the symptoms I'd described in my Thursday post when I saw my doctor on Friday, so she ordered a CT scan on Monday. The scan would give us a lot of information--was their fluid in my lungs? abdomen? how much? and, most importantly, did we now have a target for an external drain?
I did the scan in the afternoon and got a call from my doctor later that day. She had three important pieces of information:
That third piece of information could save my life. If we can get the drains placed, it will let me manually clear the bilirubin. And if we can get it cleared down towards the 3s, then I become eligible for all sorts of treatments.
Can you feel the whiplash? From a weekend of mourning to a Monday of celebrating. Though, I'll admit, it's mostly my family that's celebrating--and I'm thrilled they are! But I just can't. Not yet. I have been burned so many times over these two years, and my last several procedures have been a failure. I am so afraid that I'll let myself be hopeful about these drains and then, when I wake up from anesthesia, find out that we have another failure. Because, then, we truly are out of options. Right now, my heart/mental posture is to brace for impact; I'll believe it when I see it.
At the same time, I'm acutely aware of this deep sense I've had since the beginning that this journey would take me "right to the edge" and then, once I reached it, things would turn around. I can't think of anything that better fits that description than this moment.
-----
So, here's the plan, and here's what I'd love from you:
On Friday I'm going to the University of Pennsylvania Hospital and having all four procedures at the same time. They begin at 11:30. It is going to be an insanely long day, involving sticking me with lots of tubes and doing (hopefully) intricate drain placements. I'll stay in the hospital overnight. We'll make moves from there, depending on the success of these drains.
What I'd love from you: Hope on my behalf. You all have been carrying me through this hell--through insanely kind videos, letters, messages, and gifts--and I feel like we've reached the terminal station. I am spent, guarded, and afraid. But I know that this is also a moment that deserves rejoicing to some degree--even the prospect of hope is a small grace--and I want to make sure it is given that. You've got to bear witness where there's witness to be borne, and this feels like that moment, regardless of the outcome.
But first--like a YouTube commercial--I need to interject with a PSA regarding my disease. I've been wanting to do this for some time but the updates have just been too personal for it to ever make sense. So, gimme a second, let me do some quick awareness raising, and then I'll flip back to outlining the quietly dramatic rollercoaster that my life has become.
Young Onset Colon Cancer
The phrase "we need to start talking about _____" is starting to nauseate me (we need to start talking about the lack of organic lettuce on McDonald's burgers! It's unjust!!) but, my God, we really do need to start talking about young onset colorectal cancer [CRC]. Why? Because it is killing young people (defined here as under the age of 50). And it has been, with steadily increasing frequency, since 1994.
Here's the current state of things: each year colonoscopies are protecting older patients from the devastating effects of CRC; consequentially, in the aggregate, it looks like we are "winning the fight" against this cancer. But meanwhile, more and more young people are showing up in their doctors' office with symptoms--like blood in the stool--asking what is going on. Doctors aren't generally trained to think "colon cancer" when they see a young patient with a bloody stool so it usually takes a while for the young patient to get scheduled for a colonoscopy. Even if the colonoscopy was quickly scheduled, though, it might not be a huge help because by the time you are symptomatic, the cancer is usually at an advanced stage. This is basically my story, and it is very similar to other young patients I've met over these past two years.
Why are more young people being diagnosed with CRC? That's the money question. And no institution that I'm aware of is directing serious resources towards answering it. The general consensus is that it's something in our environment--that could be antibiotics in our food or something otherwise dietary. No one knows, but we should, because many experts estimate that by 2030, 10% of all colon cancers and 22% of rectal cancers will occur in young patients. Without knowing which young people to target for early screenings (you can't just start sticking probes up every 18 year old's butt--it's a horrible birthday gift and, while we might be a progressive society, I don't think we're yet that progressive), we won't know how to find those patients and they, like young patients today, will be far more likely to face advanced disease and a much heightened likelihood of death. If we know the cause, we can find the young patients, screen them, and likely prevent their deaths.
Last thing: The age at which people are being diagnosed with CRC seems to be falling each year. I heard a story this week about a 13 year old who was diagnosed with Stage IV colon cancer. That is absurd. And I've heard about similar cases. Currently in the United States, about 20,000 patients between ages 15-39 are diagnosed with CRC each year; ~4,000 of them will die. That number will keep climbing, and the statistical lower bound will keep falling (ages 11-39?) until we get serious about this. If I die of this very preventable disease, I hope that someone who reads this will carry the message forward. It's a cause that could truly save so many lives.
There is so much more I could say but we've reached the point of nearly two YouTube commercial's worth of interruption. No one likes that. I apologize. Back to the updates.
The Weekend
I had my third out of four rounds of chemo this past Friday. Before I begin my infusions, I go over the basics with my doctor--how are my blood levels, have we seen any improvement in key metrics, what side effects did I have these past two weeks and what could I expect these next two weeks, etc. These meetings take place in a cramped office and, this Friday, that office included my doctor, my Dad, and me.
I've been frustrated because my chemo hasn't seemed to be working. Here's the basic rundown: the entire purpose of this chemo has been to reduce my bilirubin levels. A healthy person usually has a level around 1-2. Under 10% of the population--including myself--has a harmless condition called Gilbert's Syndrome, which means we have heightened bilirubin levels. For us, a "normal" level is ~3.
For months my bilirubin has hovered around 10. When I started chemo, it went up, not down. (On Friday, I learned that it had climbed to 20....wrong way). The vast majority of clinical trials, promising chemotherapies and procedures require that your bilirubin level be near normal. So, with only one round of this chemo left, it made sense for me to start asking about next steps.
"Doctor, what's our backup plan if these last two rounds of chemo can't normalize my bilirubin?"
She got quiet and I quickly interjected with an alternative I'd heard a lot about.
"I heard there's a way we could place an external drain [e.g., tubes coming out of my chest] so that I can manually drain the bilirubin each night? Is that a possibility?"
Then she turned to me and my Dad and started explaining.
"We looked at the external drain idea before starting chemo and it was impossible. Your scans from the past several months show no targets--there is no bile duct wide enough for us to actually insert a tube into it, so there's no way we could place a drain. If this chemo doesn't work and an external drain is still impossible, then we need to start talking about hospice and end of life care."
------
There's no "good time" to start an end of life conversation, but I sure as hell didn't expect it to happen last Friday. I'm generally cautious about the questions I ask (ask scary questions, get scary answers) but I totally tripped into that one. I was floored. My doctor began a Hospice 101 discussion and everything slowly started to set in.....in one month, when chemo finished, this journey might be done. That felt impossible. My health journey has been atrocious--all I've accumulated are weird scars, some painful and long-lasting side effects, trauma across the board, and an Olympic number of hours in the hard-backed chairs of hospital waiting rooms. But there has always been a backup plan. To suddenly hit that point where all the cards were dealt--all my losses collected--hit me like a truck.
My doctor then added: "There's a real possibility you stop breathing at some point over these next few weeks. If that happens, my professional and personal recommendation is that you not be resuscitated. That would be the cancer's way of really overtaking you and, if you were resuscitated, you could be left with a very low quality and shortened life. I think there's a lot to be said for dying with dignity if you find yourself in that situation."
-----
So that's what I was doing around Friday lunchtime, EST. For time's sake, I'll skip some details--like how my Dad and I asked the doctor to leave us alone in the room after the conversation so we could do some much needed weeping. The rest of the day, though, was "normal". I went to chemo, where the nurse asked me the usual questions (Q. Are you feeling down, dejected, or not hopeful for the future? A. You could call it that, sure.) And then I went home and cried again with my family and our close friends. We spent the weekend together, enjoying each other, crying a lot, trying to think through how we best wanted to move through what seemed to be the beginning of my final days.
Monday
I was experiencing many of the symptoms I'd described in my Thursday post when I saw my doctor on Friday, so she ordered a CT scan on Monday. The scan would give us a lot of information--was their fluid in my lungs? abdomen? how much? and, most importantly, did we now have a target for an external drain?
I did the scan in the afternoon and got a call from my doctor later that day. She had three important pieces of information:
- There is over 1L of fluid in my lungs. That's why I'm struggling to breathe/talk. They could remove it in a procedure this week.
- There is a ton of fluid in my abdomen. That's why I look like Homer Simpson and find it hard to walk. They could remove it in a procedure this week. [Note: For #1 and 2, the outstanding question is how quickly the fluid accumulates. I could have it all removed this week and be right back to where I am by next week. But we won't know the rate until we try.]
- They think they found a target for an external drain in the left AND right side of my liver. They are going to try to place it during a procedure this week.
That third piece of information could save my life. If we can get the drains placed, it will let me manually clear the bilirubin. And if we can get it cleared down towards the 3s, then I become eligible for all sorts of treatments.
Can you feel the whiplash? From a weekend of mourning to a Monday of celebrating. Though, I'll admit, it's mostly my family that's celebrating--and I'm thrilled they are! But I just can't. Not yet. I have been burned so many times over these two years, and my last several procedures have been a failure. I am so afraid that I'll let myself be hopeful about these drains and then, when I wake up from anesthesia, find out that we have another failure. Because, then, we truly are out of options. Right now, my heart/mental posture is to brace for impact; I'll believe it when I see it.
At the same time, I'm acutely aware of this deep sense I've had since the beginning that this journey would take me "right to the edge" and then, once I reached it, things would turn around. I can't think of anything that better fits that description than this moment.
-----
So, here's the plan, and here's what I'd love from you:
On Friday I'm going to the University of Pennsylvania Hospital and having all four procedures at the same time. They begin at 11:30. It is going to be an insanely long day, involving sticking me with lots of tubes and doing (hopefully) intricate drain placements. I'll stay in the hospital overnight. We'll make moves from there, depending on the success of these drains.
What I'd love from you: Hope on my behalf. You all have been carrying me through this hell--through insanely kind videos, letters, messages, and gifts--and I feel like we've reached the terminal station. I am spent, guarded, and afraid. But I know that this is also a moment that deserves rejoicing to some degree--even the prospect of hope is a small grace--and I want to make sure it is given that. You've got to bear witness where there's witness to be borne, and this feels like that moment, regardless of the outcome.
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