a comeback
I used to blog.
Eight or nine years ago, I had a site that I called, "Blahg, blahg, blahg," because I was creative, and clever, and it was fairly descriptive of what most people could find--at first, my endless rants about my kids and my health; then, eventually, it turned to politics and that was when I just decided to stop writing.
No one wants to read political opinions.
Or, maybe they did.
But I don't think anyone wanted to read mine.
So I quit.
But now I'm back.
And what brought me back, you ask?
A seemingly endless desire, since July of 2016, to get my thoughts on paper.
It's been a rough nine months.
In July, my dad was diagnosed with stage 3 esophageal cancer.
A couple of weeks later, it was upgraded (yes! promotion!) to stage 4 because they found some "other spots" in his spine and shoulder.
Then in October, my dad was diagnosed as cancer-free. The tumor was gone. The spots were gone. We could all take a deep breath. And we did. And it was glorious.
But then in January, it was back--and we are once again batting for The Cancer Team.
I went to a lot of appointments with my dad last year, and my mind would just swirl, and dance, and scream at me as I walked the halls of the Anschutz Cancer Pavilion. The people I saw. The struggle I witnessed. The sheer sadness and fear that permeated the walls. My thoughts were so clear--on occasion, I'd put them into the Notes section of my phone because I really felt like what I had to say on the inside needed to be said on the outside.
But then I'd either forget, or I'd tell myself no one wanted to listen.
Except that here's the thing--I don't write for other people. I write for me. Maybe some people will follow this blog. Maybe some (most) people will find it mind-numbingly boring. My main concern is that it acts as the proper outlet for me.
I need to get these thoughts out.
I need to get them down on paper.
And also, I want to keep people informed on what we have coming up.
Because yes, while my dad's cancer has been at the forefront of my mind for the better half of the last nine months, I've got my own health struggles that I am being faced with and they are major enough that I need to talk--er, write--about them, too.
So really, I am starting this blog because I want to document my journey. My dad's journey. My family's journey through it all. The pain. The excitement. The fear. The thrill. All of it. I want it out in the open. I need it out in the open.
Many of you know--and if you don't, now you do--that I have been struggling with subglottic stenosis since 2005. My formal diagnosis came in 2007, and I have had 19 laryngoscopy/bronchoscopy surgeries since then to fix the problem. Scar tissue grows in my airway, I struggle to breath, the doctor goes in there and cuts it out, and then I'm good for another six weeks to four years...we just never know.
I had another one of these procedures in December of 2016. It had been almost five years since my last. My airway was at a "5" (normal is a "15") and my daily struggle was enough to send me to a new doctor, looking for help. He dilated me to a "15," and I went on my merry way.
On January 20, my breathing changed overnight. Literally. I went to bed that night breathing clearly, and I woke up the next morning gasping for air.
I went in for another procedure on March 7. My doctor found that my airway was still perfectly open...but a little further down, at the site of my trach, my cartilage had collapsed. A CT scan last Friday, and a phone call from my doctor today, confirmed what we were expecting to hear...
...I need a tracheal resection which is, essentially, a reconstructive surgery of my airway.
My airway is only halfway open.
I literally do not know more than this at this point. He is supposed to call me again in a day or two, after consulting with his partner (ironically, my other doctor) about the next step. And even then, I am not sure if this surgery is something I am looking at having tomorrow...or a year from now.
But I can tell you what I have read on the internet, from friends in the club who have had the same surgery.
Two days in ICU.
Three days without the ability to swallow.
Five days with my chin sewn to my chest.
Seven to 10 days in the hospital.
Four to six weeks of recovery.
They cut the bad part of the airway out, and reconnect the two good parts.
A three-inch incision at the base of my neck.
A better than 80% chance that this is a permanent solution for me.
I could shoot weddings without being short of breath.
I could live in the Rocky Mountains and go on hikes.
I could live in ski country and actually go skiing.
I could ride bikes with my kids.
I could do laundry without sounding like Darth Vader.
I mean, the possibilities are endless.
So I want to document my journey. I am praying for a positive outcome, always. But I want the good and the bad to be on paper.
And of course, I am going to include photos.
My photos will almost never relate to my health struggles, or my dad's journey, lol. But I am currently doing a 365 so the photos will serve as a glimpse into that day. To remind me that my life isn't just doctors, and disease, and appointments, and worry, and fear, and phone calls.
Life is also spending a couple hours with my daughter, and our friend, Cora, at the park. It's baking cookies together, or taking a drive through the mountains. It's loving, and laughing, and arguing, and yelling, and crying, and joking, and forgiving...and all the other things that end in -ing.
Eight or nine years ago, I had a site that I called, "Blahg, blahg, blahg," because I was creative, and clever, and it was fairly descriptive of what most people could find--at first, my endless rants about my kids and my health; then, eventually, it turned to politics and that was when I just decided to stop writing.
No one wants to read political opinions.
Or, maybe they did.
But I don't think anyone wanted to read mine.
So I quit.
But now I'm back.
And what brought me back, you ask?
A seemingly endless desire, since July of 2016, to get my thoughts on paper.
It's been a rough nine months.
In July, my dad was diagnosed with stage 3 esophageal cancer.
A couple of weeks later, it was upgraded (yes! promotion!) to stage 4 because they found some "other spots" in his spine and shoulder.
Then in October, my dad was diagnosed as cancer-free. The tumor was gone. The spots were gone. We could all take a deep breath. And we did. And it was glorious.
But then in January, it was back--and we are once again batting for The Cancer Team.
I went to a lot of appointments with my dad last year, and my mind would just swirl, and dance, and scream at me as I walked the halls of the Anschutz Cancer Pavilion. The people I saw. The struggle I witnessed. The sheer sadness and fear that permeated the walls. My thoughts were so clear--on occasion, I'd put them into the Notes section of my phone because I really felt like what I had to say on the inside needed to be said on the outside.
But then I'd either forget, or I'd tell myself no one wanted to listen.
Except that here's the thing--I don't write for other people. I write for me. Maybe some people will follow this blog. Maybe some (most) people will find it mind-numbingly boring. My main concern is that it acts as the proper outlet for me.
I need to get these thoughts out.
I need to get them down on paper.
And also, I want to keep people informed on what we have coming up.
Because yes, while my dad's cancer has been at the forefront of my mind for the better half of the last nine months, I've got my own health struggles that I am being faced with and they are major enough that I need to talk--er, write--about them, too.
So really, I am starting this blog because I want to document my journey. My dad's journey. My family's journey through it all. The pain. The excitement. The fear. The thrill. All of it. I want it out in the open. I need it out in the open.
Many of you know--and if you don't, now you do--that I have been struggling with subglottic stenosis since 2005. My formal diagnosis came in 2007, and I have had 19 laryngoscopy/bronchoscopy surgeries since then to fix the problem. Scar tissue grows in my airway, I struggle to breath, the doctor goes in there and cuts it out, and then I'm good for another six weeks to four years...we just never know.
I had another one of these procedures in December of 2016. It had been almost five years since my last. My airway was at a "5" (normal is a "15") and my daily struggle was enough to send me to a new doctor, looking for help. He dilated me to a "15," and I went on my merry way.
On January 20, my breathing changed overnight. Literally. I went to bed that night breathing clearly, and I woke up the next morning gasping for air.
I went in for another procedure on March 7. My doctor found that my airway was still perfectly open...but a little further down, at the site of my trach, my cartilage had collapsed. A CT scan last Friday, and a phone call from my doctor today, confirmed what we were expecting to hear...
...I need a tracheal resection which is, essentially, a reconstructive surgery of my airway.
My airway is only halfway open.
I literally do not know more than this at this point. He is supposed to call me again in a day or two, after consulting with his partner (ironically, my other doctor) about the next step. And even then, I am not sure if this surgery is something I am looking at having tomorrow...or a year from now.
But I can tell you what I have read on the internet, from friends in the club who have had the same surgery.
Two days in ICU.
Three days without the ability to swallow.
Five days with my chin sewn to my chest.
Seven to 10 days in the hospital.
Four to six weeks of recovery.
They cut the bad part of the airway out, and reconnect the two good parts.
A three-inch incision at the base of my neck.
A better than 80% chance that this is a permanent solution for me.
I could shoot weddings without being short of breath.
I could live in the Rocky Mountains and go on hikes.
I could live in ski country and actually go skiing.
I could ride bikes with my kids.
I could do laundry without sounding like Darth Vader.
I mean, the possibilities are endless.
So I want to document my journey. I am praying for a positive outcome, always. But I want the good and the bad to be on paper.
And of course, I am going to include photos.
My photos will almost never relate to my health struggles, or my dad's journey, lol. But I am currently doing a 365 so the photos will serve as a glimpse into that day. To remind me that my life isn't just doctors, and disease, and appointments, and worry, and fear, and phone calls.
Life is also spending a couple hours with my daughter, and our friend, Cora, at the park. It's baking cookies together, or taking a drive through the mountains. It's loving, and laughing, and arguing, and yelling, and crying, and joking, and forgiving...and all the other things that end in -ing.
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