Saturday, December 10, 2011
Shawn's new site at Caring Bridge
Shawn just started a new site at Caring Bridge - follow him there at http://caringbridge.org/visit/shawngilley.
Monday, December 5, 2011
Painful Reminders
The theme of the past five years has been I just need a diagnosis. After all, I can deal with anything if I just know what I'm dealing with. I'm certainly not going to say that it was better not knowing. In fact, I'm fairly comfortable describing that particular experience as a shit-filled nightmare lasting far longer than one ever thought could be possible.
That being said, this past month or so has been a reminder of what our reality is. The stress MRI found no treatable causes of the heart failure (blocked arteries, etc.) and thus, the assumption is that it's either a result of the beating the heart took over the past few years or it's directly related to the cancer. The good news is that the treatment is proving to hold the cardiac function normal and band-aid fix or not, I'll take it.
The MRI also showed that even with normal function, the heart is still enlarged, however, which is not great. Essentially, if you think of the heart as a balloon, a blockage could cause it to temporarily inflate and upon removing the blockage, the balloon returns back to its normal elasticity. However, if the balloon is over-inflated for too long, it becomes permanently stretched out and worn. So I can add living with heart failure to my list of things to deal with.
What's been most hard on myself and my family is the reminder that this is my life now. When we didn't know what was wrong, we could hope that they'll find this easily treatable thing that'll allow me to resume the life I had before this. And still after the carcinoid cancer diagnosis, every reminder that my life will never return to "normal" forces us to watch that hope we carried for so long shatter all over again. It happened when I picked up the paperwork from the oncologist with the diagnosis "metastatic carcinoid cancer". It happened with these recent tests where we somehow thought that maybe the heart failure was reversible. And it happened when after not being able to digest any food for a week, my oncologist said that the carcinoid syndrome will break through occasionally and there's not much we can do about that.
I've spent a lot of time mulling this over and I think what's so hard is the fact that I'm mourning the loss of the life I thought I'd have. I don't have the energy I used to. I will never be able to work full time due to the extreme fatigue from the medications and the disease itself. I have to exercise every single day because not only does it help maintain my appetite but the moment I stop, my muscles will shrivel to nothing.
But while I do get frustrated with certain realities, I have not let that stop me from creating a new life and planning a future with my new limitations. I do freelance copy writing for a local marketing firm, I teach religious school at the temple, I continue to supply my producer with new songs and I am in the midst of writing a book about this saga. Make no mistake about it, I can be knocked down over and over again but I will never stop standing back up.
That being said, this past month or so has been a reminder of what our reality is. The stress MRI found no treatable causes of the heart failure (blocked arteries, etc.) and thus, the assumption is that it's either a result of the beating the heart took over the past few years or it's directly related to the cancer. The good news is that the treatment is proving to hold the cardiac function normal and band-aid fix or not, I'll take it.
The MRI also showed that even with normal function, the heart is still enlarged, however, which is not great. Essentially, if you think of the heart as a balloon, a blockage could cause it to temporarily inflate and upon removing the blockage, the balloon returns back to its normal elasticity. However, if the balloon is over-inflated for too long, it becomes permanently stretched out and worn. So I can add living with heart failure to my list of things to deal with.
What's been most hard on myself and my family is the reminder that this is my life now. When we didn't know what was wrong, we could hope that they'll find this easily treatable thing that'll allow me to resume the life I had before this. And still after the carcinoid cancer diagnosis, every reminder that my life will never return to "normal" forces us to watch that hope we carried for so long shatter all over again. It happened when I picked up the paperwork from the oncologist with the diagnosis "metastatic carcinoid cancer". It happened with these recent tests where we somehow thought that maybe the heart failure was reversible. And it happened when after not being able to digest any food for a week, my oncologist said that the carcinoid syndrome will break through occasionally and there's not much we can do about that.
I've spent a lot of time mulling this over and I think what's so hard is the fact that I'm mourning the loss of the life I thought I'd have. I don't have the energy I used to. I will never be able to work full time due to the extreme fatigue from the medications and the disease itself. I have to exercise every single day because not only does it help maintain my appetite but the moment I stop, my muscles will shrivel to nothing.
But while I do get frustrated with certain realities, I have not let that stop me from creating a new life and planning a future with my new limitations. I do freelance copy writing for a local marketing firm, I teach religious school at the temple, I continue to supply my producer with new songs and I am in the midst of writing a book about this saga. Make no mistake about it, I can be knocked down over and over again but I will never stop standing back up.
Friday, November 18, 2011
The Saga Continues...
It's been a while since I've posted anything up here, which actually is good news. For the first time in years, things have been pretty stable. Every three weeks, I go in for my lovely treatment (hint - lovely is definitely an insert for another word) and every six weeks or so, I visit with my oncologist to make sure everything is working correctly. So far, the treatment has definitely kept things from visibly growing on the CT scans and given that that's all they can do for metastatic carcinoids, I'll happily accept those results.
Now those of you who have been following this journey over the past few years know how difficult it has been going between doctors and keeping them all in communication with each other. That's why I chose to see a primary care physician in the same practice as my nephrologist who is the one who referred me to my oncologist. With everyone under the same roof, the communication is much more efficient and overall easier on me.
The last month or so though, I began to feel short of breath throughout the day and was having more and more trouble doing my daily exercise. I was also getting more swollen and having a lot of trouble sleeping without being propped up. When I saw my primary care doc, I told her about my shortness of breath and she listened to my heart and lungs, expressing concern over what she heard. Also, with carcinoids there's something called carcinoid heart disease where the excess hormones cause plaque like build up in the valves and consequently destroy them.
So she sent me to get an echocardiogram and my oncologist sent me to a pulmonologist and to have a pulmonary function test. Now at this point in the story I know it's beginning to sound like the diagnostic circles we have been running over the past few years where I have a symptom, doctors order tests and consults, everything comes back normal and they remain confused over the symptom.
Interestingly, this is the first time in as long as I can remember that that was not the outcome. My primary doc called me to say that while there was no evidence of the typical carcinoid heart disease, my heart in general wasn't pumping hard enough and as a result, is causing fluid buildup in my lungs and other extremities. She said she had reviewed the echo with the cardiologist in their practice and he wanted to see me.
So yesterday, I met with the cardiologist who explained that on my echo in 2009, my ejection fraction (the % of blood pumped out of the heart, normal being anything over 55% but ideally between 60-65%) was 65%. In 2010, my ejection fraction was the very border of normal at 55% and as of a few weeks ago, has now dipped to a troubling 41%. This reduced function is a result of a form of congestive heart failure known as systolic heart failure that he said could be explained by a number of things. It may be from the years of hypertension, though they would expect it to have been worse a few years ago when the blood pressure was out of control. It could also be from the excessive radiation from the high number of scans I've had, though that doesn't seem very likely either. He said he wants to run a stress MRI to see if there are any carcinoids lurking in or around the heart that are damaging it. However, he explained that quite often they don't find the exact cause of heart failure so we may not ever know.
The plan is to treat the heart failure with different blood pressure meds and a diuretic to keep the fluid from piling up. Even after the first day, I slept a million times better waking up only 4-5 times to go to the bathroom verses the 10-15 times I was waking up the past few weeks because I couldn't breathe. I decided that I need a break from hospitals for the week of thanksgiving and will be spending that week with Arie. Then after thanksgiving, I'll be seeing my oncologist and having the stress MRI that Wednesday 11/29.
As thanksgiving is the time to give thanks, I'll tell you exactly what I'm thankful for. I have a group of doctors that are working together to keep me as stable as possible. I have this new cardiologist who spent a lot of time with me and my parents to compassionately explain what's going on and pledge that he'll be spending many late nights doing research to see if there's anything else he can find out about carcinoids and heart failure. I have a wonderful and supportive family and I just celebrated my 4 year anniversary with my beautiful and supportive girlfriend. Yes the saga does continue but there are definitely a myriad of reasons why I can be thankful this turkey day.
Now those of you who have been following this journey over the past few years know how difficult it has been going between doctors and keeping them all in communication with each other. That's why I chose to see a primary care physician in the same practice as my nephrologist who is the one who referred me to my oncologist. With everyone under the same roof, the communication is much more efficient and overall easier on me.
The last month or so though, I began to feel short of breath throughout the day and was having more and more trouble doing my daily exercise. I was also getting more swollen and having a lot of trouble sleeping without being propped up. When I saw my primary care doc, I told her about my shortness of breath and she listened to my heart and lungs, expressing concern over what she heard. Also, with carcinoids there's something called carcinoid heart disease where the excess hormones cause plaque like build up in the valves and consequently destroy them.
So she sent me to get an echocardiogram and my oncologist sent me to a pulmonologist and to have a pulmonary function test. Now at this point in the story I know it's beginning to sound like the diagnostic circles we have been running over the past few years where I have a symptom, doctors order tests and consults, everything comes back normal and they remain confused over the symptom.
Interestingly, this is the first time in as long as I can remember that that was not the outcome. My primary doc called me to say that while there was no evidence of the typical carcinoid heart disease, my heart in general wasn't pumping hard enough and as a result, is causing fluid buildup in my lungs and other extremities. She said she had reviewed the echo with the cardiologist in their practice and he wanted to see me.
So yesterday, I met with the cardiologist who explained that on my echo in 2009, my ejection fraction (the % of blood pumped out of the heart, normal being anything over 55% but ideally between 60-65%) was 65%. In 2010, my ejection fraction was the very border of normal at 55% and as of a few weeks ago, has now dipped to a troubling 41%. This reduced function is a result of a form of congestive heart failure known as systolic heart failure that he said could be explained by a number of things. It may be from the years of hypertension, though they would expect it to have been worse a few years ago when the blood pressure was out of control. It could also be from the excessive radiation from the high number of scans I've had, though that doesn't seem very likely either. He said he wants to run a stress MRI to see if there are any carcinoids lurking in or around the heart that are damaging it. However, he explained that quite often they don't find the exact cause of heart failure so we may not ever know.
The plan is to treat the heart failure with different blood pressure meds and a diuretic to keep the fluid from piling up. Even after the first day, I slept a million times better waking up only 4-5 times to go to the bathroom verses the 10-15 times I was waking up the past few weeks because I couldn't breathe. I decided that I need a break from hospitals for the week of thanksgiving and will be spending that week with Arie. Then after thanksgiving, I'll be seeing my oncologist and having the stress MRI that Wednesday 11/29.
As thanksgiving is the time to give thanks, I'll tell you exactly what I'm thankful for. I have a group of doctors that are working together to keep me as stable as possible. I have this new cardiologist who spent a lot of time with me and my parents to compassionately explain what's going on and pledge that he'll be spending many late nights doing research to see if there's anything else he can find out about carcinoids and heart failure. I have a wonderful and supportive family and I just celebrated my 4 year anniversary with my beautiful and supportive girlfriend. Yes the saga does continue but there are definitely a myriad of reasons why I can be thankful this turkey day.
Wednesday, August 3, 2011
A new chapter - a post by Shawn
A few weeks ago, I met with an oncologist at University of Chicago’s Duchossois Center of Advanced Medicine, which is the home to one of the best oncology centers in the nation. After a brief discussion and a review of my records, this doctor seemed pretty confident in the diagnosis of carcinoid syndrome but to be sure, he wanted to try me on the common treatment and re-run some of the common hormone markers for carcinoids.
Then last Tuesday, July 28th, I sat in his office to experience a first for this horrifying diagnostic experience. First off, my chromagranin A, the blood hormone marker typically elevated in carcinoid patients, was 390 with normal being anything less than 225. In addition, my CT scan of the pelvis and chest showed several abnormalities including two spots on the pelvic bone suspicious for metastatic activity as well as some enlarged lymph nodes in the chest.
“Well Mr. Gilley,” my doctor started. “With these CT findings combined with the abnormal blood work and reaction to the treatment, let’s just call this what it is. It’s carcinoid cancer.”
So here’s where we are. I’m going in every three weeks for the chemotherapy treatment of carcinoid syndrome called sandostatin. To put it simply, it’s a mean son-of-a-bitch of a medicine causing awful stomach cramps, long periods of nausea, and more than anything else, feeling pretty run down.
I will go see the oncologist on a regular basis just like old friends and I’ll also have the pleasure of being on first name basis with all the lovely personnel and in the lab and in radiology.
So here’s the part that I’ve had trouble writing. You see, I can spout out the facts with ease but the tricky part for me is verbalizing my reaction to all of this. Because while I’ve certainly known there’s something wrong for the better part of the last four years, I haven’t had anyone willing to definitively classify it.
I’ve watched the unique ways everyone around me has responded. Some simply want to say it’s great news. While I am absolutely relieved that the searching game we’ve been playing is over, I think I may have a different understanding of great news. You see, getting a dream job, that’s great news. Getting married; that’s splendid. Just bought a new car, well kudos to you. Diagnosed with a remarkably uncommon and infrequently studied cancer, not exactly news worth popping the champagne for.
And yet, there’s the other people who stand there, shuffle their feet awkwardly, fix their gaze on the floor tiles and mutter something about being optimistic that treatment will help and that they’re sorry I’m going through this. Certainly an understandable reaction and in no way am I trying to pass judgment on those who have reacted this way.
Truth be told, I don’t begrudge any of these reactions because really, what the hell do you say to this? We’ve traded the bad news of “I don’t know what’s wrong” for some different bad news.
Here’s my reaction and it’s not simple. Am I relieved? I’m relieved that I know what I’m fighting against. I know what I can do to help myself stay strong and as healthy as possible and I know what the plan is to continuously treat it. And yet, I’m not really happy either.
I’m mad as hell that while my friends are joyously posting pictures and statuses about their first jobs on facebook, I’m being driven to treatments and spending uncanny amounts of time sipping ginger ale and praying to not have to run back to the bathroom. Even more, I’m sitting in my bed with one hand on my stomach thinking about the fact that while we may have a current plan for treatment, there is no plan for ending treatment.
As in, this is it folks. My dreams of being a teacher and working passionately and intensely in a high school classroom, a la Robin Williams in “Dead Poet’s Society”, has shattered like a glass frame holding that aspiration on my mantle.
So my reaction is that after four years of my life revolving around the search for this diagnostic unicorn, I’m trying to figure out what my life is with this less than positive reality permanently affixed to it. I’m putting away old dreams and trying to forge new ones. I’m accepting the pieces of my life that are out of my hands and taking this one-day at a time.
I’m fixating on the truth that I’m extremely lucky to have a girl that has not only stuck by me these past years, but has made even the most miserable times tolerable with her unwavering love and support. More over, I’m appreciating the fact that this illness has made me smart enough to appreciate her and make sure I never take her for granted for even a fraction of a second.
I’m lucky to have parents that sit hours on end in every waiting room of every doctor’s office and testing facility and have been there to support me every step of the way. They’ve been through their own version of hell these past few years that I can’t fathom and I admire them for continuing to wake up each day and simply get out of bed.
Quite honestly, both my family and myself simply need to time to cope and adjust. So be patient and understand that while it’s good news that we know what we’re doing, the hope we’ve been clinging to these past years that maybe this is a simple and curable thing has been taken away. Now we’re left standing here piecing together the silver linings with the unsavory realities.
Then last Tuesday, July 28th, I sat in his office to experience a first for this horrifying diagnostic experience. First off, my chromagranin A, the blood hormone marker typically elevated in carcinoid patients, was 390 with normal being anything less than 225. In addition, my CT scan of the pelvis and chest showed several abnormalities including two spots on the pelvic bone suspicious for metastatic activity as well as some enlarged lymph nodes in the chest.
“Well Mr. Gilley,” my doctor started. “With these CT findings combined with the abnormal blood work and reaction to the treatment, let’s just call this what it is. It’s carcinoid cancer.”
So here’s where we are. I’m going in every three weeks for the chemotherapy treatment of carcinoid syndrome called sandostatin. To put it simply, it’s a mean son-of-a-bitch of a medicine causing awful stomach cramps, long periods of nausea, and more than anything else, feeling pretty run down.
I will go see the oncologist on a regular basis just like old friends and I’ll also have the pleasure of being on first name basis with all the lovely personnel and in the lab and in radiology.
So here’s the part that I’ve had trouble writing. You see, I can spout out the facts with ease but the tricky part for me is verbalizing my reaction to all of this. Because while I’ve certainly known there’s something wrong for the better part of the last four years, I haven’t had anyone willing to definitively classify it.
I’ve watched the unique ways everyone around me has responded. Some simply want to say it’s great news. While I am absolutely relieved that the searching game we’ve been playing is over, I think I may have a different understanding of great news. You see, getting a dream job, that’s great news. Getting married; that’s splendid. Just bought a new car, well kudos to you. Diagnosed with a remarkably uncommon and infrequently studied cancer, not exactly news worth popping the champagne for.
And yet, there’s the other people who stand there, shuffle their feet awkwardly, fix their gaze on the floor tiles and mutter something about being optimistic that treatment will help and that they’re sorry I’m going through this. Certainly an understandable reaction and in no way am I trying to pass judgment on those who have reacted this way.
Truth be told, I don’t begrudge any of these reactions because really, what the hell do you say to this? We’ve traded the bad news of “I don’t know what’s wrong” for some different bad news.
Here’s my reaction and it’s not simple. Am I relieved? I’m relieved that I know what I’m fighting against. I know what I can do to help myself stay strong and as healthy as possible and I know what the plan is to continuously treat it. And yet, I’m not really happy either.
I’m mad as hell that while my friends are joyously posting pictures and statuses about their first jobs on facebook, I’m being driven to treatments and spending uncanny amounts of time sipping ginger ale and praying to not have to run back to the bathroom. Even more, I’m sitting in my bed with one hand on my stomach thinking about the fact that while we may have a current plan for treatment, there is no plan for ending treatment.
As in, this is it folks. My dreams of being a teacher and working passionately and intensely in a high school classroom, a la Robin Williams in “Dead Poet’s Society”, has shattered like a glass frame holding that aspiration on my mantle.
So my reaction is that after four years of my life revolving around the search for this diagnostic unicorn, I’m trying to figure out what my life is with this less than positive reality permanently affixed to it. I’m putting away old dreams and trying to forge new ones. I’m accepting the pieces of my life that are out of my hands and taking this one-day at a time.
I’m fixating on the truth that I’m extremely lucky to have a girl that has not only stuck by me these past years, but has made even the most miserable times tolerable with her unwavering love and support. More over, I’m appreciating the fact that this illness has made me smart enough to appreciate her and make sure I never take her for granted for even a fraction of a second.
I’m lucky to have parents that sit hours on end in every waiting room of every doctor’s office and testing facility and have been there to support me every step of the way. They’ve been through their own version of hell these past few years that I can’t fathom and I admire them for continuing to wake up each day and simply get out of bed.
Quite honestly, both my family and myself simply need to time to cope and adjust. So be patient and understand that while it’s good news that we know what we’re doing, the hope we’ve been clinging to these past years that maybe this is a simple and curable thing has been taken away. Now we’re left standing here piecing together the silver linings with the unsavory realities.
Friday, April 1, 2011
Where We Are - a post by Shawn
Over the past few years, we've been on a diagnostic roller coaster that has lasted far too long. All throughout this time, we've had the mindset that if they could just diagnose this, everything would be better. A few weeks ago, I saw an oncologist in Bloomington and just left his office from a follow up an hour ago. As far as a diagnosis, he is confident in calling this carcincoid syndrome. However, here's the tricky part. Carcinoid syndrome is a paraneoplastic syndrome, which is, "a rare disorders that is triggered by an altered immune system response to cancer." But, treatment for carcinoid syndrome is purely symptomatic. Since carcinoids are wildly small in nature, they are very difficult to find so while my hormone levels associated with carcinoids are high, they don't know where the primary tumor is. I'm going to see an oncologist in Indianapolis for further insight but as of now, the we are no where near the conclusion of this drama.
For the time being, I'm going to do what I've been doing. I'm going to keep working on my degree and maintaining my optimism that some day, I can have a life that doesn't involve spending as much time with doctors as I do with friends.
For the time being, I'm going to do what I've been doing. I'm going to keep working on my degree and maintaining my optimism that some day, I can have a life that doesn't involve spending as much time with doctors as I do with friends.
Tuesday, February 8, 2011
Happy Birthday Shawn
Yesterday was Shawn's 22nd birthday. I spent part of the day looking at old videos:
Thursday, January 13, 2011
update - more waiting
In the past few months, Shawn's seen a few new doctors and has had lots more tests. The current thinking from the gastroenterologist is that his nausea and weight loss are caused by his hypercalcemia. Neurologist likewise believes that neuromuscular problems are due to hypercalcemia.
What remains a mystery is what is causing the hypercalcemia. A new round of blood tests, urine tests, CT scan, xrays failed to help pinpoint the cause.
About a month after the bone scan, Shawn started feeling a new spot on one of the bones of his right hand. Sure enough, it is located right where the scan lit up. What does all this mean? The short answer: more doctors!
We're waiting to hear back now from two new doctors to schedule appointments. One in Bloomington and another at U of C. So for now, more waiting... waiting... waiting...
What remains a mystery is what is causing the hypercalcemia. A new round of blood tests, urine tests, CT scan, xrays failed to help pinpoint the cause.
About a month after the bone scan, Shawn started feeling a new spot on one of the bones of his right hand. Sure enough, it is located right where the scan lit up. What does all this mean? The short answer: more doctors!
We're waiting to hear back now from two new doctors to schedule appointments. One in Bloomington and another at U of C. So for now, more waiting... waiting... waiting...
Subscribe to:
Posts (Atom)