It's been a couple weeks since I went public with my health challenges in my last blog post and I've experienced the most amazing gift since that moment. Imagine for a moment that everyone you have ever impacted or influenced in your life were to reach out at once and tell you the effect you have had on their lives. People you haven't seen or spoken to in 35+ years sharing stories about you as a child. Friends from high school and college that haven't been a part of your life since you were students together. Colleagues from companies past and present telling you how you have shaped their careers and sometimes their lives. And every relative close and far sharing what you mean to them. It's overwhelming. It's humbling. It's a gift.
It's so easy to get wrapped up in our day-to-day lives that you fail to recognize the impact that your life has had on those around you and thereby on your world. It's a shame that most people will never get the gift that I have received. Most of us will pass through life without realizing our own impact on the world. I'm lucky. It's a gift I will cherish for the rest of my days.
Friday, October 3, 2014
Monday, September 22, 2014
The Road Ahead
For those of you who read my previous post I must admit to you that I didn't share everything I knew about my condition when I wrote it. There was a very important piece of information that I decided not to share with the world until I could share it with my children after I was released from the hospital.
"Terminal". It's such a devastating word. One I hope you never hear.
I awoke momentarily in the ICU (intensive care unit) out of the narcotic induced haze and overheard a doctor in my room use the word "cancer". I was too loopy to see anything and in too much pain to respond in any way... but I heard it distinctly before I fell back into my narcotic induced sleep. It would be two days before anyone used that word in my presence again. It was a nurse who asked me the simple question "Have any of the doctors actually shared your diagnosis with you yet?" I responded that I had overheard the word cancer and she confirmed it for me. I asked "Terminal?" and she nodded.
While this is the 3rd time in my life I have been diagnosed with an incurable disease (Crohns & PSC previously), nothing could prepare me for the phrase "terminal Stage 4 metastatic colon cancer". We are certain that it has metastasized to the lymph nodes and we believe it has also metastasized to the liver as well. We cannot be 100% sure of this today because the surgeons were not able to get a liver sample before closing up my abdomen during my initial surgery (apparently they were worried I wouldn't make it beyond the 6 hours I was already in surgery). Our hope is that we can stop/slow it from metastasizing to the lungs (the 2nd favorite destination of colon cancer beyond the liver). We have found no evidence of lung involvement to date but, of course, cancer cells are too small to be seen so all we can do is hope.
An additional downside to the cancer diagnosis is that it makes me ineligible for a liver transplant if my PSC were to worsen. Many thanks to those who stepped up and volunteered to be a living donor for me, I cannot tell you how your generous offers touched me and my family (I am crying at the thought as I type this line). But it is not to be.
One of the few nice things about being ill the the outpouring of love and support that you receive (or at least that I've received) from my friends and family. Emails, cards, text messages, phone calls, unexpected visits, comments on Facebook/blogs/twitter. I read / listen-to every single one of them and while I cannot always reply, every one of them lifts my spirits and makes me realize how my life has touched others. I got one of the most heartwarming voicemails from someone I haven't worked with in several years just yesterday. I cried when I listened to it. It's been wonderful to have my parents so close (about 30 mins away) and I've gotten to see a lot of them both in the hospital and since. I talk to my brother in Michigan every week which certainly brightens my day. But most of the heavy lifting has rested on the shoulders of my amazing wife, Kristen. She is my wife, my home healthcare provider, and my savior at the moment. She is the strongest person I have ever met. I may not be lucky health-wise, but when it comes to choosing a spouse, I am truly the luckiest man alive.
With two young children at home (ages 6 & 9) Kristen and I had to decide what to share, with whom, and when. We definitely didn't want them to find out about my diagnosis and prognosis by overhearing a conversation or piecing things together. So we decided to be honest with them and sat them down last weekend and just told them everything as clearly yet concisely as possible. They were upset of course, but I've been amazed at how adaptable children are. We can now talk about it as a family without any hushed tones or raised eyebrows. It's difficult to know for sure, but I think it was the right choice for us.
As for work, I am fortunate to work for an employer (Pivotal) that provides life insurance, short-term and long-term disability insurance, and is generous on top of all that. I am not sure if I will return to work or not (or even whether I will be strong enough to have that option). I certainly gain a lot of my self worth and gain a lot of satisfaction from my work, so it could actually be theraputic for me. I'm currently on short-term disability insurance and will migrate to long-term disability when that runs out. I guess I will just have to wait and see whether returning to work is a real option for me.
My prognosis is really difficult to determine. All you really have is the statistics, but all patients are individuals and have specific advantages and disadvantages that bias those statistics. For example, the 5 year survival rate for stage 4 colon cancer is about 6%. But, was the average patient age in that study 30 or 60? The average survival of a stage 4 colon cancer patient from diagnosis is just over 2 years. Am I on the high side or the low side of the bell curve? Who knows? Obviously, my PSC is a complicating factor that could have a negative effect on my survival rate. Then again, chemo may actually help my PSC in addition to slowing/stopping my tumor growth (according to my GI oncologist). So instead of focusing in on a date, I've decided to focus on living the rest of my life focused on the things that bring me joy in life. Starting with a 6 year old and a 9 year old who need their daddy.
"Terminal". It's such a devastating word. One I hope you never hear.
I awoke momentarily in the ICU (intensive care unit) out of the narcotic induced haze and overheard a doctor in my room use the word "cancer". I was too loopy to see anything and in too much pain to respond in any way... but I heard it distinctly before I fell back into my narcotic induced sleep. It would be two days before anyone used that word in my presence again. It was a nurse who asked me the simple question "Have any of the doctors actually shared your diagnosis with you yet?" I responded that I had overheard the word cancer and she confirmed it for me. I asked "Terminal?" and she nodded.
While this is the 3rd time in my life I have been diagnosed with an incurable disease (Crohns & PSC previously), nothing could prepare me for the phrase "terminal Stage 4 metastatic colon cancer". We are certain that it has metastasized to the lymph nodes and we believe it has also metastasized to the liver as well. We cannot be 100% sure of this today because the surgeons were not able to get a liver sample before closing up my abdomen during my initial surgery (apparently they were worried I wouldn't make it beyond the 6 hours I was already in surgery). Our hope is that we can stop/slow it from metastasizing to the lungs (the 2nd favorite destination of colon cancer beyond the liver). We have found no evidence of lung involvement to date but, of course, cancer cells are too small to be seen so all we can do is hope.
An additional downside to the cancer diagnosis is that it makes me ineligible for a liver transplant if my PSC were to worsen. Many thanks to those who stepped up and volunteered to be a living donor for me, I cannot tell you how your generous offers touched me and my family (I am crying at the thought as I type this line). But it is not to be.
One of the few nice things about being ill the the outpouring of love and support that you receive (or at least that I've received) from my friends and family. Emails, cards, text messages, phone calls, unexpected visits, comments on Facebook/blogs/twitter. I read / listen-to every single one of them and while I cannot always reply, every one of them lifts my spirits and makes me realize how my life has touched others. I got one of the most heartwarming voicemails from someone I haven't worked with in several years just yesterday. I cried when I listened to it. It's been wonderful to have my parents so close (about 30 mins away) and I've gotten to see a lot of them both in the hospital and since. I talk to my brother in Michigan every week which certainly brightens my day. But most of the heavy lifting has rested on the shoulders of my amazing wife, Kristen. She is my wife, my home healthcare provider, and my savior at the moment. She is the strongest person I have ever met. I may not be lucky health-wise, but when it comes to choosing a spouse, I am truly the luckiest man alive.
With two young children at home (ages 6 & 9) Kristen and I had to decide what to share, with whom, and when. We definitely didn't want them to find out about my diagnosis and prognosis by overhearing a conversation or piecing things together. So we decided to be honest with them and sat them down last weekend and just told them everything as clearly yet concisely as possible. They were upset of course, but I've been amazed at how adaptable children are. We can now talk about it as a family without any hushed tones or raised eyebrows. It's difficult to know for sure, but I think it was the right choice for us.
As for work, I am fortunate to work for an employer (Pivotal) that provides life insurance, short-term and long-term disability insurance, and is generous on top of all that. I am not sure if I will return to work or not (or even whether I will be strong enough to have that option). I certainly gain a lot of my self worth and gain a lot of satisfaction from my work, so it could actually be theraputic for me. I'm currently on short-term disability insurance and will migrate to long-term disability when that runs out. I guess I will just have to wait and see whether returning to work is a real option for me.
Tuesday, August 26, 2014
Decided to top my January great scare performance this weekend.
A few of you may have heard that I have had a recent health scare. If you read my prior post in January you learned about my PSC diagnosis and the challenges of liver transplantation.
This months edition will dip back over 2 decades ago when I was diagnosed with Crohn's disease. In 1991 it was bit generally well known and there was no world wide web yet to learn about it. It's an inflammatory bowel disease that can range from mild to terrifying. Over the part few weeks I took that accelerated journey.
It started with a colangitis attack (liver infection) about 3 weeks back. I took a well of antibiotics (yes, finishing entire bottle). One of the dangers of antibiotics is a new infection that springs up right after the antibiotics stop...it s call "c diff" and it is incredibly dangerous. I developed a c diff infection but didn't realize it for over a week (was traveling in California). On Friday I got home to Atlanta and went to the doctor who confirmed her cdiff diagnosis over the weekend and got me started on new antibiotics. Unfortunately, they didn't work in time and on Sunday night my colon perforated spilling the contents off my bowls into my abdomen. On a pain scale of 1-10 this is a twelve. I couldn't breath and thought I might suffocate. It was 3 am and Kristen quickly got me to the e.r. where we waited in line (not patiently, but we waited). I finally saw a doctor about 60 -90 minutes later and was told I needed surgery immediately. Monday morning the removed my colon and have me a illeostomy bag that hangs from my abdomen. Today I managed to get internet access and get my breathing tube removed. It's still painful to talk much, but comments and email is welcome....but the single best thing you can do for me is fill this out.
http://organdonor.gov/becomingdonor/stateregistries.html
Thank you and I will add health updates here so that you don't have to learn by word of mouth.
For those of you who dig scars here you go. The loop goes around my belly button.
Love,
Matt
Monday, January 27, 2014
My PSC Journey
Diagnosis
About three years ago, I received a diagnosis called Primary Sclerosing Cholangitis (PSC) which is a rare liver disease (affecting 3 out of every 100,000 people in the U.S.) without a known cause or cure. The disease prevents the bile that’s produced in the liver from properly draining into the small intestine. Without proper drainage, the bile buildup causes stones and cirrhosis of the liver, which will ultimately require a liver transplant to survive. Given the serious nature of the condition, I decided to share this information only with my immediate family (obviously, that has now changed).
Cholangitis Attacks
As you might imagine, this news came as quite a shock to me and my family. But, I was asymptomatic at the time, so it was easy to live in denial for a while. About 6-9 months later I was on a business retreat in the mountains of Colorado when I suddenly felt very ill. Instead of participating in the meeting I slept for about 18-20 hours straight. I had no idea at the time that I was having a cholangitis attack (liver infection) and that my life was in danger without medical attention. Luckily, my body was able to fight off the infection and I returned home none-the-wiser. About a year later I was on vacation with my family at the beach and I had another cholangitis attack, this time I found my way to the emergency room and spent a week in the hospital recovering with the help of antibiotics.
Proactive Monitoring & Therapy
I get pictures (MRCP) taken of my liver every so often by my heptologist to track the progression of my disease. A few months ago the pictures showed what appeared to be a lot of gall stones that had formed behind the strictures in my liver and my doctor was very surprised that I had not experienced more symptoms yet. He proposed that we insert a drainage tube through my ribs and into my liver that would help to drain out the bile and hopefully a lot of the gall stones. The tube would be taped to my side and i would come back to the hospital periodically over a period of 6 weeks where they would insert instruments into the tube and try to balloon strictures in my liver and remove gallstones.
Recent Saga
On January 9th I checked into Emory Radiology for my procedure. When I came out of anesthesia I knew something was wrong. The amount of pain I was experiencing far exceeded what the doctors expected. After a couple of days in the hospital on narcotics I went home. Only to return 3 days later with uncontrollable pain. They did an MRI but could not determine the reason for the excessive pain. I was put on a narcotics cocktail of 3 drugs in an effort to control the pain. We then installed a 2nd liver drain in my abdomen with the hope that it might be less painful and we might be able to remove the 1st one. No such luck. Finally, we switched to plan B and used the drains to help guide an endoscope (tube that goes down your throat) into my primary bile duct and install a stent to improve the flow of bile from the liver into the small intestine. Once they installed the stent the doctors were able to remove the drains altogether (yippee). Finally pain free, I was able to go home after a 5 day stay in the hospital.
Unfortunately, a few days later I developed a fever that progressed over the next 3-4 days until I was told to return to the hospital for treatment of a probable liver infection (a clear risk of the procedure, but not one that you expect to happen). So I’ve been hospitalized for the 3rd time in three weeks, this time with a cocktail of IV antibiotics to fight the liver infection. After 5 more days in the hospital it looks like I might be able to finally go home (fever free) with a PICC line installed so that I can administer my own IV antibiotics for the next 4-6 weeks. I’m writing this from my hospital room right now as I await the doctor’s decision.
The Road Ahead
This will not be the last time I am hospitalized for PSC. I know this. But my hope is that we were able to clear away enough gallstones and sludge from my liver and balloon enough strictures during the procedures and the painful time that the drains were in that we have extended the life of my liver. Also, since I now have a stent inside my primary bile duct we should be able to conduct future therapies endoscopically (down my throat) rather than having to punch a new hole in me.
PSC is a strange disease. Some people need a liver transplant within 12 months of diagnosis and others spend 20 years or more with their original liver. There’s just so much variance that statistics aren’t much help. So, I will go on about my daily life until the next time that PSC decides that it’s time to remind me of it’s presence and we will deal with the challenges as they come.
As word of my hospitalization spread I was asked continuously “what can I do to help?”. And I never knew what to tell them until now. You can be a hero and become an organ donor online right now, before you close your web browser. It takes 5 minutes. There are over 35,000 people waiting for a kidney and over 10,000 people waiting on a liver this very moment. On average, 18 people die every day waiting for an organ transplant. Take the 5 minutes now. Click a mouse, save a life, be a hero. Your organs aren’t much good to you once you’ve passed, but they are a source of hope for thousands who sit waiting for that miracle phone call “we have your new liver/heart/lung/kidney/etc" : http://organdonor.gov/becomingdonor/stateregistries.html
The life you save could be mine.
About three years ago, I received a diagnosis called Primary Sclerosing Cholangitis (PSC) which is a rare liver disease (affecting 3 out of every 100,000 people in the U.S.) without a known cause or cure. The disease prevents the bile that’s produced in the liver from properly draining into the small intestine. Without proper drainage, the bile buildup causes stones and cirrhosis of the liver, which will ultimately require a liver transplant to survive. Given the serious nature of the condition, I decided to share this information only with my immediate family (obviously, that has now changed).
Cholangitis Attacks
As you might imagine, this news came as quite a shock to me and my family. But, I was asymptomatic at the time, so it was easy to live in denial for a while. About 6-9 months later I was on a business retreat in the mountains of Colorado when I suddenly felt very ill. Instead of participating in the meeting I slept for about 18-20 hours straight. I had no idea at the time that I was having a cholangitis attack (liver infection) and that my life was in danger without medical attention. Luckily, my body was able to fight off the infection and I returned home none-the-wiser. About a year later I was on vacation with my family at the beach and I had another cholangitis attack, this time I found my way to the emergency room and spent a week in the hospital recovering with the help of antibiotics.
Proactive Monitoring & Therapy
I get pictures (MRCP) taken of my liver every so often by my heptologist to track the progression of my disease. A few months ago the pictures showed what appeared to be a lot of gall stones that had formed behind the strictures in my liver and my doctor was very surprised that I had not experienced more symptoms yet. He proposed that we insert a drainage tube through my ribs and into my liver that would help to drain out the bile and hopefully a lot of the gall stones. The tube would be taped to my side and i would come back to the hospital periodically over a period of 6 weeks where they would insert instruments into the tube and try to balloon strictures in my liver and remove gallstones.
Recent Saga
On January 9th I checked into Emory Radiology for my procedure. When I came out of anesthesia I knew something was wrong. The amount of pain I was experiencing far exceeded what the doctors expected. After a couple of days in the hospital on narcotics I went home. Only to return 3 days later with uncontrollable pain. They did an MRI but could not determine the reason for the excessive pain. I was put on a narcotics cocktail of 3 drugs in an effort to control the pain. We then installed a 2nd liver drain in my abdomen with the hope that it might be less painful and we might be able to remove the 1st one. No such luck. Finally, we switched to plan B and used the drains to help guide an endoscope (tube that goes down your throat) into my primary bile duct and install a stent to improve the flow of bile from the liver into the small intestine. Once they installed the stent the doctors were able to remove the drains altogether (yippee). Finally pain free, I was able to go home after a 5 day stay in the hospital.
Unfortunately, a few days later I developed a fever that progressed over the next 3-4 days until I was told to return to the hospital for treatment of a probable liver infection (a clear risk of the procedure, but not one that you expect to happen). So I’ve been hospitalized for the 3rd time in three weeks, this time with a cocktail of IV antibiotics to fight the liver infection. After 5 more days in the hospital it looks like I might be able to finally go home (fever free) with a PICC line installed so that I can administer my own IV antibiotics for the next 4-6 weeks. I’m writing this from my hospital room right now as I await the doctor’s decision.
The Road Ahead
This will not be the last time I am hospitalized for PSC. I know this. But my hope is that we were able to clear away enough gallstones and sludge from my liver and balloon enough strictures during the procedures and the painful time that the drains were in that we have extended the life of my liver. Also, since I now have a stent inside my primary bile duct we should be able to conduct future therapies endoscopically (down my throat) rather than having to punch a new hole in me.
PSC is a strange disease. Some people need a liver transplant within 12 months of diagnosis and others spend 20 years or more with their original liver. There’s just so much variance that statistics aren’t much help. So, I will go on about my daily life until the next time that PSC decides that it’s time to remind me of it’s presence and we will deal with the challenges as they come.
As word of my hospitalization spread I was asked continuously “what can I do to help?”. And I never knew what to tell them until now. You can be a hero and become an organ donor online right now, before you close your web browser. It takes 5 minutes. There are over 35,000 people waiting for a kidney and over 10,000 people waiting on a liver this very moment. On average, 18 people die every day waiting for an organ transplant. Take the 5 minutes now. Click a mouse, save a life, be a hero. Your organs aren’t much good to you once you’ve passed, but they are a source of hope for thousands who sit waiting for that miracle phone call “we have your new liver/heart/lung/kidney/etc" : http://organdonor.gov/becomingdonor/stateregistries.html
The life you save could be mine.
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