http://www.youtube.com/watch?v=jFIXmSdRnDo
Monday, June 25, 2012
Saturday, June 16, 2012
Shake Up The Rug From Underneath Your Feet
Sometimes it seems as if we can't catch a break. Other times it feels as if we are in the movie Groundhog Day and wake up and re-live the same day over and over, quietly pressing down our desires, passions, and thoughts. You can get lost in it, over your head in it until you have forgotten what it was like to have focus, to be truly alive. We are all guilty of it. The human brain is amorous towards patterns and low resistance.
But we all have desires and passions. And in moments of true inspiration we connect with those attitudes. We become focused and move towards a goal that we want for ourselves or our world. This though, is temporary for most. It lasts if not only for a moment, only for a short time before being flooded by the brains affinity for the easy. As efficient and wonderful as it is, the brain is a product of evolution, survival of the fittest.
So how do we gain this focus and keep it? How do we stay pointed towards what is important, what gives us awe? And how do we keep it fresh? How do we keep it from becoming old hat?
The title of this blog was taken from a video I saw by a guy named Jason Silva. You can google him and find out more about him, but in the video he uses the phrase "Shake up the rug from underneath your feet." "Disruption makes things new again."
Yesterday, I was working the evening shift. I had just come back from dinner and was getting ready to begin the second half of my day. All of a sudden, it started to thunderstorm. A thick downpour of rain coated the air. I parked in the parking lot and sat for a minute. I had a decision to make. Sit in my truck and watch the lot through the storm? Drive the boundaries? I had plenty of indoor projects I could have worked on. I had already had a rough day, so why not take the dry/easy route and stay in the truck or inside? Do what anyone else would have done.
But then I remembered that phrase "Shake up the rug from underneath your feet." I had the opportunity to do something exhilarating. Something that could help change my focus, give me a sense of awe. Something that would disrupt my thoughts of low resistance and self constructed patterns and would make me feel alive again.
So I jumped out of the truck, threw on my pack, put my jacket over my pack, and started off. The rain was thick and heavy, soaking my clothes through almost instantly. I could feel the water dripping down into my boots after only a few steps. I had to keep my head tilted down just a smidge to allow the water to drain off of my eye brows and not into my eyes. It was loud. It sounded like an orchestrated applause from thousands of people. The lightning would startle you, even though you knew it was coming. The thunder was deep, and rumbled through the hills as you could feel it move through your chest. I stood on the shore of the lake for a while. The air had been hot earlier in the day. The wind accompanying the storm made for a welcomed chill.
I hike the trails every day I am at work. I see the same trees, same animals, same plants and rocks. But in this storm they were different. The forest was a different creature all together. I was immediately inspired. My brain began to have focus. I began to feel euphoric and awestruck. Along with the storm, I had been the architect of my own happiness. I had made a simple decision to disrupt my normal patterns and walk in the rain. I felt new again after so many months of feeling broken.
Like a wave, the clutter was washed out, and a clean, new canvas was left.
But we all have desires and passions. And in moments of true inspiration we connect with those attitudes. We become focused and move towards a goal that we want for ourselves or our world. This though, is temporary for most. It lasts if not only for a moment, only for a short time before being flooded by the brains affinity for the easy. As efficient and wonderful as it is, the brain is a product of evolution, survival of the fittest.
So how do we gain this focus and keep it? How do we stay pointed towards what is important, what gives us awe? And how do we keep it fresh? How do we keep it from becoming old hat?
The title of this blog was taken from a video I saw by a guy named Jason Silva. You can google him and find out more about him, but in the video he uses the phrase "Shake up the rug from underneath your feet." "Disruption makes things new again."
Yesterday, I was working the evening shift. I had just come back from dinner and was getting ready to begin the second half of my day. All of a sudden, it started to thunderstorm. A thick downpour of rain coated the air. I parked in the parking lot and sat for a minute. I had a decision to make. Sit in my truck and watch the lot through the storm? Drive the boundaries? I had plenty of indoor projects I could have worked on. I had already had a rough day, so why not take the dry/easy route and stay in the truck or inside? Do what anyone else would have done.
But then I remembered that phrase "Shake up the rug from underneath your feet." I had the opportunity to do something exhilarating. Something that could help change my focus, give me a sense of awe. Something that would disrupt my thoughts of low resistance and self constructed patterns and would make me feel alive again.
So I jumped out of the truck, threw on my pack, put my jacket over my pack, and started off. The rain was thick and heavy, soaking my clothes through almost instantly. I could feel the water dripping down into my boots after only a few steps. I had to keep my head tilted down just a smidge to allow the water to drain off of my eye brows and not into my eyes. It was loud. It sounded like an orchestrated applause from thousands of people. The lightning would startle you, even though you knew it was coming. The thunder was deep, and rumbled through the hills as you could feel it move through your chest. I stood on the shore of the lake for a while. The air had been hot earlier in the day. The wind accompanying the storm made for a welcomed chill.
I hike the trails every day I am at work. I see the same trees, same animals, same plants and rocks. But in this storm they were different. The forest was a different creature all together. I was immediately inspired. My brain began to have focus. I began to feel euphoric and awestruck. Along with the storm, I had been the architect of my own happiness. I had made a simple decision to disrupt my normal patterns and walk in the rain. I felt new again after so many months of feeling broken.
Like a wave, the clutter was washed out, and a clean, new canvas was left.
Thursday, June 07, 2012
A Little Less Hazy
There was a haze over the city when I got up early this morning and peeked through the curtains of the hotel room. I was up just after sunrise because, A) I couldn't sleep and B) I knew I had an important appointment that I had to make sure the family and me were awake and prepared for.
We had driven up to Pittsburgh, PA from Nashville, TN to visit a doctor that specializes in pseudomyxoma peritonei treatment. He is one of the top dogs in a dog pen of only 17 or so special dogs in the country. We had decided to make a small vacation out of it since we were not going to get much in the way of a vacation this year due to me taking so much time off for my surgeries. And, in pure Jenkins' fashion, we have made a pure adventure of the trip.
But this morning was a different feeling. It was really something which I had been waiting for since we found out about all this stuff going on. I didn't necessarily think that we would have any definitive diagnosis just by traveling up here. What I did know though, and Kari had agreed, was that we would have spoken to the best doc we could about the situation, and that in and of itself would be worth the trip. In the back of my mind, I knew what Dr. Bartlett (the specialist) was going to say. But I kept an open mind, and proceeded with my morning with an air of excitement that we could possibly have some answers after our appointment.
Kari and Wren and I were walking up to the Hillman Cancer Center at UPMC a full 30 minutes before the appointment. (My Mom had driven up from Virginia, and she took care of River in our hotel room during the appointment.) When we got there we were greeted at the main entrance, given a welcome packet of information, and given a tour of the patient library. Then a welcome employee took us upstairs to the office we would be seeing Dr. Bartlett in. After a few signatures and a set of vitals, we were put in an unassuming exam room. Only after a minute or so, we were visited by a nurse that I had spoken on the phone with previously. She just wanted to stop in, check on me and see if we needed anything. She also said she had sat in on their morning meeting as they went over my case. Then Dr. Bartlett's P.A., Heather, came in the room and went over our case with us to make sure they had all the details down, and then did an exam. She stepped out and then after another minute stepped back in with Dr. Bartlett.
Dr. Bartlett, an unassuming, quiet spoken, middle aged guy, with a friendly but dare I say "doctorish" disposition sat down in the chair in front of me. He began to explain the process of pseudomyxoma peritonei to us. I had read much of what he said already in research articles, but later Kari would tell me that what he said was very informative and helped her make some sense of the disease. He told me that there was truly no way of knowing whether or not I would eventually get pseudomyxoma. He said that some people get it and that others get lucky and don't. The only way of knowing was to continue a watch and wait process, by getting MRI scans every 6 months for two years, and then every year, for 10 years. If, after 10 years, the scans are clear, then I can stop getting scans because even if I did have the disease it would be so slow growing that I would not have to deal with it in my lifetime. If, sometime in that 10 years the disease shows up on a scan, then they would go in, do a cytoreductive surgery along with a Heated Introperitoneal Chemotherapy treatment, and hopefully that should be enough to take care of the disease. Pretty straight forward. He also wrote a prescription for tumor marker tests along with the MRI scans to check for any change in that field.
I knew, through all of my research, that this was what he was going to say. And for the first hour or so, I was sort of in a funk, only because secretly I had hoped that we were going to get a much clearer answer that would break through this wall of unknown that we were bumping into the last few months. But after some thought and talking it through with Kari, I knew that the advice from Dr. Bartlett was just what the doctor ordered. It was a definitive, confident answer to the direction we should go from here. It wasn't a "well, I think this should be fine", or a "I don't normally do this, but since you are asking I'll order these scans for you" type of answer. It was a "we want you to do this" and that was it.
We are still swimming the sea of the unknown with this stuff. But I tell you, after today, the shoreline is a little less far off. The haze has begun to burn off and we are pointed in the right direction confidently for a change.
Tomorrow we are leaving Pittsburgh and headed back to Nashville. It will feel good to get back into the swing of things and have a direction, a set plan, a plotted course. And while us Jenkins' are never free from change and life's craziness, it will feel more like an adventure again, instead of a ship lost without a sail.
Kari insisted upon taking a photo of me with the Doc and the P.A. because they were part of our vacation.
We had driven up to Pittsburgh, PA from Nashville, TN to visit a doctor that specializes in pseudomyxoma peritonei treatment. He is one of the top dogs in a dog pen of only 17 or so special dogs in the country. We had decided to make a small vacation out of it since we were not going to get much in the way of a vacation this year due to me taking so much time off for my surgeries. And, in pure Jenkins' fashion, we have made a pure adventure of the trip.
But this morning was a different feeling. It was really something which I had been waiting for since we found out about all this stuff going on. I didn't necessarily think that we would have any definitive diagnosis just by traveling up here. What I did know though, and Kari had agreed, was that we would have spoken to the best doc we could about the situation, and that in and of itself would be worth the trip. In the back of my mind, I knew what Dr. Bartlett (the specialist) was going to say. But I kept an open mind, and proceeded with my morning with an air of excitement that we could possibly have some answers after our appointment.
Kari and Wren and I were walking up to the Hillman Cancer Center at UPMC a full 30 minutes before the appointment. (My Mom had driven up from Virginia, and she took care of River in our hotel room during the appointment.) When we got there we were greeted at the main entrance, given a welcome packet of information, and given a tour of the patient library. Then a welcome employee took us upstairs to the office we would be seeing Dr. Bartlett in. After a few signatures and a set of vitals, we were put in an unassuming exam room. Only after a minute or so, we were visited by a nurse that I had spoken on the phone with previously. She just wanted to stop in, check on me and see if we needed anything. She also said she had sat in on their morning meeting as they went over my case. Then Dr. Bartlett's P.A., Heather, came in the room and went over our case with us to make sure they had all the details down, and then did an exam. She stepped out and then after another minute stepped back in with Dr. Bartlett.
Dr. Bartlett, an unassuming, quiet spoken, middle aged guy, with a friendly but dare I say "doctorish" disposition sat down in the chair in front of me. He began to explain the process of pseudomyxoma peritonei to us. I had read much of what he said already in research articles, but later Kari would tell me that what he said was very informative and helped her make some sense of the disease. He told me that there was truly no way of knowing whether or not I would eventually get pseudomyxoma. He said that some people get it and that others get lucky and don't. The only way of knowing was to continue a watch and wait process, by getting MRI scans every 6 months for two years, and then every year, for 10 years. If, after 10 years, the scans are clear, then I can stop getting scans because even if I did have the disease it would be so slow growing that I would not have to deal with it in my lifetime. If, sometime in that 10 years the disease shows up on a scan, then they would go in, do a cytoreductive surgery along with a Heated Introperitoneal Chemotherapy treatment, and hopefully that should be enough to take care of the disease. Pretty straight forward. He also wrote a prescription for tumor marker tests along with the MRI scans to check for any change in that field.
I knew, through all of my research, that this was what he was going to say. And for the first hour or so, I was sort of in a funk, only because secretly I had hoped that we were going to get a much clearer answer that would break through this wall of unknown that we were bumping into the last few months. But after some thought and talking it through with Kari, I knew that the advice from Dr. Bartlett was just what the doctor ordered. It was a definitive, confident answer to the direction we should go from here. It wasn't a "well, I think this should be fine", or a "I don't normally do this, but since you are asking I'll order these scans for you" type of answer. It was a "we want you to do this" and that was it.
We are still swimming the sea of the unknown with this stuff. But I tell you, after today, the shoreline is a little less far off. The haze has begun to burn off and we are pointed in the right direction confidently for a change.
Kari insisted upon taking a photo of me with the Doc and the P.A. because they were part of our vacation.
“Only those are fit to live who do not fear to die; and none are fit to die who have shrunk from the joy of life and the duty of life. Both life and death are parts of the same Great Adventure.” ― Theodore Roosevelt
Monday, June 04, 2012
Adventure, Day 1
We made it to Cincinnati tonight. How a 4 hour trip gets turned into 7, one might never know, but we are here and all laying in nice cushy hotel beds.
Tomorrow holds Pittsburgh in its grasp.
Tomorrow holds Pittsburgh in its grasp.
The Mecca Awaits
A pilgrimage to one's mecca is the high note of any devout man's life story. The one I and my family are about to partake on... Well... Not so much. But, to Mecca we will go (Pittsburgh), and we will suck every bit of adventure out of it that we can.
In a couple of days we will be leaving to head to Pittsburgh, PA to meet with a cancer specialist in pseudomyxoma peritonei. He is one of the top dogs when it comes to this rare disease. And while this may seem like the opportunity to have a bummer of a trip, we are going to make it a Jenkins Adventure like we do with everything else.
Because we are driving, it is going to take two days to get there and back. With two little kiddos, it's hard to be in a hurry to get anywhere. We are going to stay two days in the Burgh, one for visiting family and the other is held for the Doc.
We are going to make sure that we squeeze in some time to see the city and get some pictures in front of the Steelers stadium, for that is why I call Pittsburgh the Mecca. We are die-hard Steelers fans!
Hopefully we get some good news along the way and get home safe, refreshed, and ready for the next season in our lives.
In a couple of days we will be leaving to head to Pittsburgh, PA to meet with a cancer specialist in pseudomyxoma peritonei. He is one of the top dogs when it comes to this rare disease. And while this may seem like the opportunity to have a bummer of a trip, we are going to make it a Jenkins Adventure like we do with everything else.
Because we are driving, it is going to take two days to get there and back. With two little kiddos, it's hard to be in a hurry to get anywhere. We are going to stay two days in the Burgh, one for visiting family and the other is held for the Doc.
We are going to make sure that we squeeze in some time to see the city and get some pictures in front of the Steelers stadium, for that is why I call Pittsburgh the Mecca. We are die-hard Steelers fans!
Hopefully we get some good news along the way and get home safe, refreshed, and ready for the next season in our lives.
Thursday, May 10, 2012
You Have to be This Tall to Ride
The last few months have been an emotional roller coaster. Up and down, up and down. I guess I shouldn't have had all that cotton candy before getting on. Now I'm a little queezy. Here is an update from the last few weeks;
Relief: After our appointment with the rare cancer doc at Vanderbilt, we felt a sense of relief. It was so good to speak with someone in person who spoke the language of this cancer. Up until that point, the doctors we had met with in person didn't know much about PMP, and what they did know, if anything, was old information that was not up to date with the latest knowledge on the disease.
Sinking Feeling: In that meeting, when the oncologist shook my hand and said "looks like we're going to be best friends for the rest of your life", I couldn't help but to give an audible "ugh...".
Confusion: I cannot express to you the amount of confusion I have felt throughout this whole process. Sometime after my meeting with the rare cancer doc here in town, I got a call from the specialist in Pittsburgh asking me to get a CT scan as soon as possible and send it to them. They already had my pathology slides, but wouldn't give me any information regarding what they found or did not find. Was this routine? Did they find something in my path slides? Why the push to get a CT right now?
Anger: A few days later I was able to get in and see my family doctor. He would have to schedule the CT scan for me so that insurance would approve it. As I sat there and described to him the events of the last few months he feverishly typed it all into his laptop. Then, upon finishing, and taking a few minutes to look up some information, he leaned back in his chair and said "sh*t, that surgeon really screwed up didn't he?!" After his decidedly caustic comment he went ahead and scheduled a CT scan.
At the CT scan later that same day, the radiologist working with me was discussing the entire ordeal with me. When I told her what had happened to start this cascade of events, she asked who the haphazard surgeon was. It just so happened that she worked with the negligent surgeon for most of her career as a nurse at the hospital. When she heard his name, she gave me a look as if to say "it's not surprising this happened." She asked if he was going to pay for all of the tests and possible treatment. I told her we were still trying to figure things out. These were her words; "well, I'm not a litigious person, but if it were me, I'd sue his pants off."
Needless to say I have felt some array of the feelings associated with anger recently.
Joy: The day after my CT scan, I had a follow up appointment with the surgeon who finished my hemicolectomy. I was quite giddy before the meeting because I knew I would be cleared to lift and eat normal and return to a more regular state of being. Sure enough he did, and I was slightly celebratory in the exam room.
Fear: Then, after announcing my transfer to a state of eating and working Pre-surgery, he pulled up my CT scan from the day before. He quietly scrolled through it, and then hovered over a section. He pointed at it and said "this is what the specialists will be looking at." The floor dropped out from under me. He showed me a spot of medium gray material in a sea of gray. He said that the spot is what mucin looks like on a CT scan, but that it could also just be inflammation.
Kari and I left the appointment in some sort of shock. Left hanging, wondering whether that light gray blob was the mucus we do not want, or simply inflammation. My gut (no pun intended) tells me that it is simply inflammation. That afternoon I mailed my scans to the specialist in Pittsburgh. Later that evening, I received an email from the specialist asking me to make an appointment to come in to their office to meet with them.
Anticipation: Yesterday I called and made an appointment with Dr David Bartlett at UPMC in the Hillman Cancer Center in Pittsburgh. Kari, the boys, and I will be traveling up there. We have decided to turn it into a little road trip, and have some fun with it. I am guessing and hoping that the visit will simply be a consult. A "you are now my patient and I can now officially review your records" type of visit. It will cost some money to make the trip, but Kari and I decided that even if it turns out to be a 10 minute, shake hands, and get your insurance information, visit, it will be worth it to know that one of the top doctors in this type of cancer is on our side and screening my records for any sign of this nasty stuff.
The loop de loop: On any good roller coaster, there is a big final loop to throw your stomach in knots and empty your pockets of any loose change you might have after spending your family fortune on a hot dog and soda from the snack bar.
This experience has been no different. Kari and I sat on the couch after the boys were asleep and talked. I tried to describe all the emotions I was feeling. Emotions towards a negligent doctor who has changed the course of my health. Emotions towards a set of doctors who blew off my risk because they are only partially educated about the full extent of this disease. Emotions towards doctors who have been helpful and knowledgable about PMP and who have and continue to help me out. Feelings of judgement for being worried about a cancer that I am only at risk for and have not been truly diagnosed with yet. For people telling me to stop researching because it wasn't helping anything. For myself, for wondering if I am overreacting or worried over nothing. I could go on and on. Up and down, up and down.
I keep getting on the computer and looking at my latest CT scan. I have only the slightest idea what I am looking at. It only works to perpetuate the roller coaster. Putting both of my boys to sleep tonight. Giving River a hug and hearing him say "I love you Daddy" in his three year old voice. Getting ready to lay Wren down and seeing him give a big smile through his sleepy eyes as I place him in the crib. All of it goes into the experience of the ride.
Here's the thing about roller coasters though, and is a key point to take away from this post. The ride up to the top is always longer than the ride down to the bottom. It is slower, and gives you a time to catch your breath, check out the scenery. The ride down is always quick. It can be exhilarating, or it can make you want to scream and puke. It all depends on if you fear the drop or not. And when the ride is all over, and the train of little fiberglass carts with shoddy safety mechanisms pulls into the main station, you have ended up somewhere in the middle. Somewhere between the highs and lows. A place that lets you know you could do it all over again, but this time you would try to enjoy it more instead of locking your eyes shut and hoping you don't lose your 7 dollar hot dog...
Relief: After our appointment with the rare cancer doc at Vanderbilt, we felt a sense of relief. It was so good to speak with someone in person who spoke the language of this cancer. Up until that point, the doctors we had met with in person didn't know much about PMP, and what they did know, if anything, was old information that was not up to date with the latest knowledge on the disease.
Sinking Feeling: In that meeting, when the oncologist shook my hand and said "looks like we're going to be best friends for the rest of your life", I couldn't help but to give an audible "ugh...".
Confusion: I cannot express to you the amount of confusion I have felt throughout this whole process. Sometime after my meeting with the rare cancer doc here in town, I got a call from the specialist in Pittsburgh asking me to get a CT scan as soon as possible and send it to them. They already had my pathology slides, but wouldn't give me any information regarding what they found or did not find. Was this routine? Did they find something in my path slides? Why the push to get a CT right now?
Anger: A few days later I was able to get in and see my family doctor. He would have to schedule the CT scan for me so that insurance would approve it. As I sat there and described to him the events of the last few months he feverishly typed it all into his laptop. Then, upon finishing, and taking a few minutes to look up some information, he leaned back in his chair and said "sh*t, that surgeon really screwed up didn't he?!" After his decidedly caustic comment he went ahead and scheduled a CT scan.
At the CT scan later that same day, the radiologist working with me was discussing the entire ordeal with me. When I told her what had happened to start this cascade of events, she asked who the haphazard surgeon was. It just so happened that she worked with the negligent surgeon for most of her career as a nurse at the hospital. When she heard his name, she gave me a look as if to say "it's not surprising this happened." She asked if he was going to pay for all of the tests and possible treatment. I told her we were still trying to figure things out. These were her words; "well, I'm not a litigious person, but if it were me, I'd sue his pants off."
Needless to say I have felt some array of the feelings associated with anger recently.
Joy: The day after my CT scan, I had a follow up appointment with the surgeon who finished my hemicolectomy. I was quite giddy before the meeting because I knew I would be cleared to lift and eat normal and return to a more regular state of being. Sure enough he did, and I was slightly celebratory in the exam room.
Fear: Then, after announcing my transfer to a state of eating and working Pre-surgery, he pulled up my CT scan from the day before. He quietly scrolled through it, and then hovered over a section. He pointed at it and said "this is what the specialists will be looking at." The floor dropped out from under me. He showed me a spot of medium gray material in a sea of gray. He said that the spot is what mucin looks like on a CT scan, but that it could also just be inflammation.
Kari and I left the appointment in some sort of shock. Left hanging, wondering whether that light gray blob was the mucus we do not want, or simply inflammation. My gut (no pun intended) tells me that it is simply inflammation. That afternoon I mailed my scans to the specialist in Pittsburgh. Later that evening, I received an email from the specialist asking me to make an appointment to come in to their office to meet with them.
Anticipation: Yesterday I called and made an appointment with Dr David Bartlett at UPMC in the Hillman Cancer Center in Pittsburgh. Kari, the boys, and I will be traveling up there. We have decided to turn it into a little road trip, and have some fun with it. I am guessing and hoping that the visit will simply be a consult. A "you are now my patient and I can now officially review your records" type of visit. It will cost some money to make the trip, but Kari and I decided that even if it turns out to be a 10 minute, shake hands, and get your insurance information, visit, it will be worth it to know that one of the top doctors in this type of cancer is on our side and screening my records for any sign of this nasty stuff.
The loop de loop: On any good roller coaster, there is a big final loop to throw your stomach in knots and empty your pockets of any loose change you might have after spending your family fortune on a hot dog and soda from the snack bar.
This experience has been no different. Kari and I sat on the couch after the boys were asleep and talked. I tried to describe all the emotions I was feeling. Emotions towards a negligent doctor who has changed the course of my health. Emotions towards a set of doctors who blew off my risk because they are only partially educated about the full extent of this disease. Emotions towards doctors who have been helpful and knowledgable about PMP and who have and continue to help me out. Feelings of judgement for being worried about a cancer that I am only at risk for and have not been truly diagnosed with yet. For people telling me to stop researching because it wasn't helping anything. For myself, for wondering if I am overreacting or worried over nothing. I could go on and on. Up and down, up and down.
I keep getting on the computer and looking at my latest CT scan. I have only the slightest idea what I am looking at. It only works to perpetuate the roller coaster. Putting both of my boys to sleep tonight. Giving River a hug and hearing him say "I love you Daddy" in his three year old voice. Getting ready to lay Wren down and seeing him give a big smile through his sleepy eyes as I place him in the crib. All of it goes into the experience of the ride.
Here's the thing about roller coasters though, and is a key point to take away from this post. The ride up to the top is always longer than the ride down to the bottom. It is slower, and gives you a time to catch your breath, check out the scenery. The ride down is always quick. It can be exhilarating, or it can make you want to scream and puke. It all depends on if you fear the drop or not. And when the ride is all over, and the train of little fiberglass carts with shoddy safety mechanisms pulls into the main station, you have ended up somewhere in the middle. Somewhere between the highs and lows. A place that lets you know you could do it all over again, but this time you would try to enjoy it more instead of locking your eyes shut and hoping you don't lose your 7 dollar hot dog...
Sunday, April 29, 2012
The Dog Days are Over...
Kari told me a story last night that was inspiring to me. We had just taken the boys out to get ice cream and were driving back home when a song came on. "The dog days are over" the song sings over and over again. It was a beautiful afternoon and we were dancing in the car making the boys laugh.
Kari asked me if I remembered her playing this song for me in the hospital. I looked at her puzzlingly. I didn't remember. The pain meds I guess kept me so sleepy that I didn't remember much. So I asked her to tell me all about it, so i can at least imagine it.
She said that while her and my Mom were waiting for me after surgery, the song came on the TV. Upon hearing it, she immediately thought the lyrics were proper for our situation, and decided to let me hear it.
The next morning, she said she came into the hospital room and played it for me. My Mom and Wren danced, my Mom teared up as she is good at doing, and Kari let me know that it is all going to be up hill from here on out. And you know, for the most part, she was right. Admittedly, there have been some tough days. We have now both had a few "cry 'em outs". I have felt rough physically some days, but those times have weaned down to an evening every now and again. We are on top of this pseudomyxoma peritonei and have a plan for monitoring the status of my insides, and for attacking it if it rears it's ugly head. Things are on the up'n'up.
To everyone who has told us they were praying, or thinking of us. To those that have came by to visit, cook us a meal, clean our house, and mow our lawn. Your actions and words have been powerful. Your kindness and love have been eye opening.
"The dog days are over,
The dog days are done."
Kari asked me if I remembered her playing this song for me in the hospital. I looked at her puzzlingly. I didn't remember. The pain meds I guess kept me so sleepy that I didn't remember much. So I asked her to tell me all about it, so i can at least imagine it.
She said that while her and my Mom were waiting for me after surgery, the song came on the TV. Upon hearing it, she immediately thought the lyrics were proper for our situation, and decided to let me hear it.
The next morning, she said she came into the hospital room and played it for me. My Mom and Wren danced, my Mom teared up as she is good at doing, and Kari let me know that it is all going to be up hill from here on out. And you know, for the most part, she was right. Admittedly, there have been some tough days. We have now both had a few "cry 'em outs". I have felt rough physically some days, but those times have weaned down to an evening every now and again. We are on top of this pseudomyxoma peritonei and have a plan for monitoring the status of my insides, and for attacking it if it rears it's ugly head. Things are on the up'n'up.
To everyone who has told us they were praying, or thinking of us. To those that have came by to visit, cook us a meal, clean our house, and mow our lawn. Your actions and words have been powerful. Your kindness and love have been eye opening.
"The dog days are over,
The dog days are done."
Wednesday, April 25, 2012
A Hard Day At The Urinal
Let me just say, for a guy who is used to having a plan and used to getting things done, it is difficult to wait and watch.
Today was a tough day for me mentally. I heard back from 3 specialists in the field of pseudomyxoma peritonei. They all reviewed my records and all responded with their suggestions. I will need to have a CT scan done with contrast in the next few weeks and a tumor marker test done, both for baseline readings purposes and to look for signs of disease. Then they suggested CT scans every 6 months for 3-5 years to check for mucin buildup in my abdomen. One doctor actually requested to see me in person for a consultation as well as sending him my pathology slides from the first two surgeries.
None of the specialists said that further surgery was warranted at this time due to the fact that I just had two surgeries and that I have not been positively diagnosed with the disease yet.
Then this morning I received an email from the GI surgeon who did my hemicolectomy. I had emailed him the day before to be proactive about checking in with the rare cancer specialist here in town. He said in his reply that he didn't think all of the follow up care suggested by the specialists was warranted. He said I was not at much risk for recurrence and that he had already spoken with the cancer specialist about my case.
Ugh... Nothing like thinking deep down inside that you may be over reacting, and then having a doctor basically tell you that you are.
Strangely though, later in the morning I got an email from his office asking if I could see the rare cancer specialist on Monday early morning, before the office is actually even open? Ok?
It ended up being an emotional day. (I kept most of it balled up inside, but had a small breakdown at the urinal in the men's bathroom at the visitor center of the park I work at. Luckily there was no one else there!). I have since decided to be my own advocate. I will continue on the path the specialists have suggested. It is my health, my life, and my future. Not a doctors. I am going to take the next two days off from research and planning, and I am going to enjoy my family. But I will make sure that I am getting the care and support I need so that my family and I can have a piece of mind that we have nipped this thing in the butt.
I have some things going for me in this whole process that make sense to bring up and think about often. This has been caught very early. Of the few folks who get this, they do not have advanced warning like I do. For me, at the first sign of bad stuff, I will get surgery and care and should have a great chance at living a normal life. In reality, I may never even get the disease. There is a big difference in risk and occurrence.
Needless to say though, it is hard for someone as young and healthy as I am (well, not as young as I used to be!) to go from being in tip top shape and with fairly littles worries in life, to fearing that my life has the chance to be cut short due to the miscues of a surgeon. "Reality Check for Mr. Jenkins, isle 32 please!".
Remember that we only have one shot at this ole world, make it count. I know I sure am going to try harder than I was. And in the process, if you see a guy in a uniform tearing up in front of a urinal, he's probably just having a rough day.
Today was a tough day for me mentally. I heard back from 3 specialists in the field of pseudomyxoma peritonei. They all reviewed my records and all responded with their suggestions. I will need to have a CT scan done with contrast in the next few weeks and a tumor marker test done, both for baseline readings purposes and to look for signs of disease. Then they suggested CT scans every 6 months for 3-5 years to check for mucin buildup in my abdomen. One doctor actually requested to see me in person for a consultation as well as sending him my pathology slides from the first two surgeries.
None of the specialists said that further surgery was warranted at this time due to the fact that I just had two surgeries and that I have not been positively diagnosed with the disease yet.
Then this morning I received an email from the GI surgeon who did my hemicolectomy. I had emailed him the day before to be proactive about checking in with the rare cancer specialist here in town. He said in his reply that he didn't think all of the follow up care suggested by the specialists was warranted. He said I was not at much risk for recurrence and that he had already spoken with the cancer specialist about my case.
Ugh... Nothing like thinking deep down inside that you may be over reacting, and then having a doctor basically tell you that you are.
Strangely though, later in the morning I got an email from his office asking if I could see the rare cancer specialist on Monday early morning, before the office is actually even open? Ok?
It ended up being an emotional day. (I kept most of it balled up inside, but had a small breakdown at the urinal in the men's bathroom at the visitor center of the park I work at. Luckily there was no one else there!). I have since decided to be my own advocate. I will continue on the path the specialists have suggested. It is my health, my life, and my future. Not a doctors. I am going to take the next two days off from research and planning, and I am going to enjoy my family. But I will make sure that I am getting the care and support I need so that my family and I can have a piece of mind that we have nipped this thing in the butt.
I have some things going for me in this whole process that make sense to bring up and think about often. This has been caught very early. Of the few folks who get this, they do not have advanced warning like I do. For me, at the first sign of bad stuff, I will get surgery and care and should have a great chance at living a normal life. In reality, I may never even get the disease. There is a big difference in risk and occurrence.
Needless to say though, it is hard for someone as young and healthy as I am (well, not as young as I used to be!) to go from being in tip top shape and with fairly littles worries in life, to fearing that my life has the chance to be cut short due to the miscues of a surgeon. "Reality Check for Mr. Jenkins, isle 32 please!".
Remember that we only have one shot at this ole world, make it count. I know I sure am going to try harder than I was. And in the process, if you see a guy in a uniform tearing up in front of a urinal, he's probably just having a rough day.
Saturday, April 21, 2012
Pseudomyxoma Peritonei and Other Words Too Hard To Explain
To begin, for reference, PMP =Pseudomyxoma Peritonei. There, now at least I don't have to type it any more!
As promised, I am following up last nights blog post with a sequel version tonight. I am still lacking much emotion about the whole thing still, so it's probably a good time to write, before I get too keyed up. Also, my lack of emotion also probably stems from the fact that I don't have many details yet, and I may just be rolling things out of proportion. That is something we will find out when I finally speak with the specialist though.
So, for now, let's work from the standpoint that I don't have this condition, and my risk for developing it is extremely low. Working from there, maybe you can set aside your grave worries for my well being (which I'm sure all of you have! Just kidding!) and let's learn what the small group of people in this world who are dealing with PMP have on their plates.
PMP is an orphan disease, it's pathological origins and best modes of treatment are shrouded in a veil of medical journals and published articles that only the most highly skilled Google searchman could find. I don't profess to be a genius on the subject, but I will attempt to paraphrase some of the probably 60 published research articles on the subject that I have read over and over. So keep in mind this is my interpretation of the facts.
An orphan disease is one that is so rare, no one really knows about it. It's sort of forgotten. Only a handful of doctors in the country are considered specialists.
Let's go from here on out in chronological order.
The appendix is connected to the cecum. The cecum is connected to the right ascending colon. (think of the child's song) The beginnings of PMP start when the pathway between the appendix and cecum becomes blocked. The appendix makes a thick gelatinous mucus (think soft jello) and fills itself up. This process can be benign, malignant, or somewhere in between. If malignant or somewhere in between, the bad cells mix in with the mucus. Given enough time or a heavy handed surgeon, and the thin walls of the appendix can break. This causes this thick mucus stuff to spread into the peritoneal cavity (that is the bag that holds most of your abdominal organs in it.) If the mucus has any malignant or pre malignant cells in it, that is bad because it spreads those cells around the abdomen. But even if the mucus is clean as a whistle, it is still bad because the mucus continues to multiply and grow in your abdomen until it squeezes your digestive tract shut and the result is less than ideal...
The "Pseudo" in PMP comes from the fact that it doesn't act like most other cancers by spreading through lymph nodes and blood vessels to other organs and parts of the body. It stays in the peritoneal cavity for the most part. But, it is much more difficult to deal with because unlike other cancers, it doesn't have a solid tumor that can be cut out or dealt with. It is jello like, and if only one cell is left behind in your abdomen, it can start the whole process over again. You cannot just wash it out with saline. That would be like trying to wash jello out of a cup by filling the cup with water and sucking the water out. The jello would just sit there. The commonly accepted treatment for this diagnosis is cytoreductive surgery (scooping out the bad stuff) and then giving your abdominal cavity a heated chemo bath where they take chemo medicine, heat it up, and then wash out your insides. That is how they get the bad cells out of there. The folks who have had to have this surgery lovingly call it MOAS (Mother of All Surgeries), because it is very difficult to go through. I feel very much for anyone who has dealt with this disease because it is apparently not a breeze to deal with.
Now that we have all of that mumbo jumbo out of the way, I will state again for the sake of anyone's worries, we are not sure that I even have this. I am waiting on an actual conversation with the specialist. His voicemail only said that I was at risk for the disease because of what happened during surgery with my appendix. Many times doctors will suggest a simple wait and see attitude. The disease can be slow growing and could take 10, 20, or 40 years to show up. No one really knows (remember orphan disease). Keep checking back here for any updates, and as soon as we have more info I will post an update.
Thank you all for your concern and for reading these blog updates.
Feel free to comment, and if I messed any of the information up and you know more about it, please comment and correct me.
-Ryan
As promised, I am following up last nights blog post with a sequel version tonight. I am still lacking much emotion about the whole thing still, so it's probably a good time to write, before I get too keyed up. Also, my lack of emotion also probably stems from the fact that I don't have many details yet, and I may just be rolling things out of proportion. That is something we will find out when I finally speak with the specialist though.
So, for now, let's work from the standpoint that I don't have this condition, and my risk for developing it is extremely low. Working from there, maybe you can set aside your grave worries for my well being (which I'm sure all of you have! Just kidding!) and let's learn what the small group of people in this world who are dealing with PMP have on their plates.
PMP is an orphan disease, it's pathological origins and best modes of treatment are shrouded in a veil of medical journals and published articles that only the most highly skilled Google searchman could find. I don't profess to be a genius on the subject, but I will attempt to paraphrase some of the probably 60 published research articles on the subject that I have read over and over. So keep in mind this is my interpretation of the facts.
An orphan disease is one that is so rare, no one really knows about it. It's sort of forgotten. Only a handful of doctors in the country are considered specialists.
Let's go from here on out in chronological order.
The appendix is connected to the cecum. The cecum is connected to the right ascending colon. (think of the child's song) The beginnings of PMP start when the pathway between the appendix and cecum becomes blocked. The appendix makes a thick gelatinous mucus (think soft jello) and fills itself up. This process can be benign, malignant, or somewhere in between. If malignant or somewhere in between, the bad cells mix in with the mucus. Given enough time or a heavy handed surgeon, and the thin walls of the appendix can break. This causes this thick mucus stuff to spread into the peritoneal cavity (that is the bag that holds most of your abdominal organs in it.) If the mucus has any malignant or pre malignant cells in it, that is bad because it spreads those cells around the abdomen. But even if the mucus is clean as a whistle, it is still bad because the mucus continues to multiply and grow in your abdomen until it squeezes your digestive tract shut and the result is less than ideal...
The "Pseudo" in PMP comes from the fact that it doesn't act like most other cancers by spreading through lymph nodes and blood vessels to other organs and parts of the body. It stays in the peritoneal cavity for the most part. But, it is much more difficult to deal with because unlike other cancers, it doesn't have a solid tumor that can be cut out or dealt with. It is jello like, and if only one cell is left behind in your abdomen, it can start the whole process over again. You cannot just wash it out with saline. That would be like trying to wash jello out of a cup by filling the cup with water and sucking the water out. The jello would just sit there. The commonly accepted treatment for this diagnosis is cytoreductive surgery (scooping out the bad stuff) and then giving your abdominal cavity a heated chemo bath where they take chemo medicine, heat it up, and then wash out your insides. That is how they get the bad cells out of there. The folks who have had to have this surgery lovingly call it MOAS (Mother of All Surgeries), because it is very difficult to go through. I feel very much for anyone who has dealt with this disease because it is apparently not a breeze to deal with.
Now that we have all of that mumbo jumbo out of the way, I will state again for the sake of anyone's worries, we are not sure that I even have this. I am waiting on an actual conversation with the specialist. His voicemail only said that I was at risk for the disease because of what happened during surgery with my appendix. Many times doctors will suggest a simple wait and see attitude. The disease can be slow growing and could take 10, 20, or 40 years to show up. No one really knows (remember orphan disease). Keep checking back here for any updates, and as soon as we have more info I will post an update.
Thank you all for your concern and for reading these blog updates.
Feel free to comment, and if I messed any of the information up and you know more about it, please comment and correct me.
-Ryan
Friday, April 20, 2012
The Voicemail
Well,
Today I got a voicemail that I was hoping I wouldn't get.
After my surgery at the beginning of April, I sent all of my records to two specialists that specialize in a type of abdominal cancer that is very rare. The reason is because, well let's just say there was a possibility that I was at risk for this cancer after my first surgery.
Guess what the doctor said in the voicemail... "Mr. Jenkins, you are clearly at risk for pseudomyxoma peritonei. We can discuss any further surgery when we speak."
Yup. I knew I was probably at risk because a bunch of "non-specialists" had told me I was. These "non-specialists" were people that either have, or are caring for someone with the disease. So "non-specialist" means "not doctor", because they probably have just as much knowledge about the disease as any docs.
I can get more into the disease in another blog, since it would take a book to explain, and especially since I haven't actually spoken to the specialists yet.
Reality is that I may not have anything, but most that I have told my situation to have agreed that it is likely. I don't have any feelings about things yet, but I tell you what... I have for sure listened to that message about a hundred times so far. It'll probably sink in at some point.
Now I have at least a weekend, probably more, to mull over what he meant by surgery, and what he meant by certainly at risk.
I tried calling him back as soon as I got the message, but the number just forwarded me to the hospitals main number, and it was well after business hours. I sent him an email to contact me again, so hopefully he won't leave me hangin like a crane fly on a spider web for too long.
Oh yeah, and I forgot. The doctor said "Have a great weekend!" at the end of the message. Umm, ok. Will do.
Today I got a voicemail that I was hoping I wouldn't get.
After my surgery at the beginning of April, I sent all of my records to two specialists that specialize in a type of abdominal cancer that is very rare. The reason is because, well let's just say there was a possibility that I was at risk for this cancer after my first surgery.
Guess what the doctor said in the voicemail... "Mr. Jenkins, you are clearly at risk for pseudomyxoma peritonei. We can discuss any further surgery when we speak."
Yup. I knew I was probably at risk because a bunch of "non-specialists" had told me I was. These "non-specialists" were people that either have, or are caring for someone with the disease. So "non-specialist" means "not doctor", because they probably have just as much knowledge about the disease as any docs.
I can get more into the disease in another blog, since it would take a book to explain, and especially since I haven't actually spoken to the specialists yet.
Reality is that I may not have anything, but most that I have told my situation to have agreed that it is likely. I don't have any feelings about things yet, but I tell you what... I have for sure listened to that message about a hundred times so far. It'll probably sink in at some point.
Now I have at least a weekend, probably more, to mull over what he meant by surgery, and what he meant by certainly at risk.
I tried calling him back as soon as I got the message, but the number just forwarded me to the hospitals main number, and it was well after business hours. I sent him an email to contact me again, so hopefully he won't leave me hangin like a crane fly on a spider web for too long.
Oh yeah, and I forgot. The doctor said "Have a great weekend!" at the end of the message. Umm, ok. Will do.
Thursday, April 12, 2012
A Re-Engineering of the Colon
This is the story about the re-engineering of my colon. After the finding of the mucocele in my cecum, then the subsequent hasty removal of my appendix, then the pathology report calling it severely dysplastic (precancerous), and a colonoscopy to find out how involved my colon was with the whole thing, it was decided that I needed a right hemicolectomy. That means a removal of the ascending right side of my colon, from where it attaches to the small intestine down on the lower right side of your abdomen, to where it turns west (or east depending on how you look at the map) in the right side of your upper abdomen. All a very simple laparoscopic procedure the doctors say, involving two small one inch incisions and a larger 2-3 inch incision above your belly button.
I went into the hospital on a Tuesday. Kari, Wren, and my Mom were with me. River was at my In-Laws. Three year olds don't fare well at a hospital for long hours. I was slightly nervous, but I just kept telling myself that I was ready for it to be over and to be back to normal. In pre-op, they put me in a pretty light purple paper hospital gown, light blue socks, and put me in a little room. I was visited by my friend Ben, and a nurse who asked if I minded if they harvested my organs for science. Well, she didn't put it quite like that. Then the party started.
In quick succession nurses and doctors and anesthesiologists came in one by one. They all asked if I understood what they were about to do to me. I would look at Kari with each one, and then state "yah". (I was getting pretty nervous). Then a young guy, who was most likely still in college, and most likely spent most of his day in the gym based on the size of his biceps, came in with two red-capped needles. He said "are you ready?", as if I had a choice. And then, I remember nothing. Kari may remember more, but the next thing I remember is waking up in post-op, and in pain.
"Ryan, remember to breath!!". The nurses kept yelling at me from across the room as they worked with other patients. I was in a big post-op room that resembled more of a car dealership service garage than a place to care for patients. Each patient had their little bay separated by a hanging curtain. Each time I would fall back asleep I would stop breathing, so the nurses would have to yell at me to keep me awake. I guess the good sleep juice hadn't worn off yet. Over the next little while I was visited by Kari and Mom, Ben, Jim, my boss Steve, and well, I'm not sure who else. I was so out of it I don't remember much. If I forgot anyone, don't feel bad. Drugs are bad for remembering things.
The one thing I do remember is the guy coming to get me to take me to my room. He wheeled me past the waiting room, and Mom and Kari were there to follow me. It felt good to see them, to know that the worst was over, and that soon I would be in my room, watching free cable, eating applesauce, and getting visits from my friends...
I don't remember much about the next 6 days. Here are a few highlights. Pain and nausea and sleep. I don't remember so much that I don't even remember writing two blog posts that I just realized I published in my drug induced stupor.
One of the things I do remember is a couple of days into my time at the hospital. I had been on a liquid diet for at least 4 days at that point, and I couldn't touch another spoonful of jello or chicken broth. I told the nurse that I was ready for something solid, like a piece of plain toast. The nurse agreed and said she'd put an order in. At lunch that day I was surprised by a much different looking food tray than I was used to at this point. The brightly colored jello and heavily aromatic chicken broth were replaced by a plate consisting of Salisbury steak, mashed potatoes, and green beans. So what's a guy who has eaten nothing but liquid for 4 days going to do? I gobbled down the whole plate in no time flat! That was a mistake I would regret in the days to come...
I spent most of my time sleeping. I was on a pump of really good pain meds, and I had moved my way up to a nausea med that basically just put me to sleep. I would wake up nauseous and request more medicine, then I would sleep again. If I timed it right, I would wake up right before a meal, eat a few bites, get some medicine, and sleep again.
My Mom was with me most of the time. Kari would bring Wren during the day, and then take him back to the house at night. I can not give enough appreciation to those two women for being by my side the entire time.
I had some rough days and some better days in the hospital, but on Easter Sunday the nurses and doctors had done about as much as they could do to get me back on the road to recovery, and so they let me go home. I was wheeled out to my Mom's car, given a bunch of prescriptions to fill, and sent home. It was quite a relief, but up to that point, 6 days after surgery, I had not used the bathroom yet. I had been eating on and off, but nothing had come out the other side. It would catch up to me the next day.
The one thing I do remember is the guy coming to get me to take me to my room. He wheeled me past the waiting room, and Mom and Kari were there to follow me. It felt good to see them, to know that the worst was over, and that soon I would be in my room, watching free cable, eating applesauce, and getting visits from my friends...
I don't remember much about the next 6 days. Here are a few highlights. Pain and nausea and sleep. I don't remember so much that I don't even remember writing two blog posts that I just realized I published in my drug induced stupor.
One of the things I do remember is a couple of days into my time at the hospital. I had been on a liquid diet for at least 4 days at that point, and I couldn't touch another spoonful of jello or chicken broth. I told the nurse that I was ready for something solid, like a piece of plain toast. The nurse agreed and said she'd put an order in. At lunch that day I was surprised by a much different looking food tray than I was used to at this point. The brightly colored jello and heavily aromatic chicken broth were replaced by a plate consisting of Salisbury steak, mashed potatoes, and green beans. So what's a guy who has eaten nothing but liquid for 4 days going to do? I gobbled down the whole plate in no time flat! That was a mistake I would regret in the days to come...
I spent most of my time sleeping. I was on a pump of really good pain meds, and I had moved my way up to a nausea med that basically just put me to sleep. I would wake up nauseous and request more medicine, then I would sleep again. If I timed it right, I would wake up right before a meal, eat a few bites, get some medicine, and sleep again.
My Mom was with me most of the time. Kari would bring Wren during the day, and then take him back to the house at night. I can not give enough appreciation to those two women for being by my side the entire time.
I had some rough days and some better days in the hospital, but on Easter Sunday the nurses and doctors had done about as much as they could do to get me back on the road to recovery, and so they let me go home. I was wheeled out to my Mom's car, given a bunch of prescriptions to fill, and sent home. It was quite a relief, but up to that point, 6 days after surgery, I had not used the bathroom yet. I had been eating on and off, but nothing had come out the other side. It would catch up to me the next day.
Monday I felt horrible. I was weak, nauseous, had a headache, and couldn't eat or drink. I couldn't force anything down the 'ole gullet. I called the doctors office and they asked me to go to the ER straight away for some fluids and electrolytes. It was the last thing I wanted to do at the time, seeing as I had just gotten home from the hospital the day before, but I followed their directions and Mom drove me. I am not a fan of the ER, and this day solidified that feeling. I was as sick as I had felt the entire post-op period, and I had to sit there in a smelly, loud room with a bunch of other sick folks, waiting for a room in the ER. They eventually gave me an IV, which helped some. Then, after waiting for quite a while, they took me back, xrayed my belly to look for blockages, and then put me on a cot in the hallway.... Me and my Mom were both sitting there in the hallway of this busy ER on a cot, in the way of just about everyone. But unfortunately it was the only place they had for us, and I am glad they put me there, because it was right beside a private, one seater bathroom. While we waiting on a nurse to see us, all of a sudden, one of my surgeons ran by us. "Hey!" I said. He stopped and told me that he had been looking for me. He and I discussed what was going on and he decided that I had been putting stuff in the top chute, but that it hadn't been coming out the bottom chute, and that there was only so long you could do that before it made you sick. It was good to see someone familiar. At about the same time a guy I work with on the ambulance that also works at that particular hospital happened by and checked on me.
They gave me a bunch of electrolytes, made me drink some nasty vitamins, and then gave me the all important suppository. A short wait later I was sitting in my private, one seater bathroom, and the bottom chute began working. As painful as it was, I was very very relieved. We stayed a bit longer and then we were able to get released just before shift change.
I have been home now 4 days since that time. I feel better every day. I have been going on walks, and doing more and more around the house. After all of this, I am finally beginning to feel somewhat normal again. I am ready to be completely normal and all healed up, but it is an experience I will not forget. Over the last couple of months I have lost one and a half organs and I plan on losing no more in the near future.
Thank you to everyone who helped, visited, prayed, and thought about me and my family during this time. I am very humbled by the amount of support we received.
Me and my Purple Dress
Post Op, in my room
The nurse got cute and cut my dressings into hearts
A bonus pic of the boys
Saturday, April 07, 2012
A Story About a Sore Butt
Day 5 in the hospital has been a tough one. Yesterday everyone was optimistic that I would be going home today. So, in preparation I took my nausea patch off due to the fact that it was making my vision blurry. The doctor wanted to make sure that went away before I went home. Then they put me on Lortab for pain control as a test to see if it would work for me once I got home. They kept me attached to the pain pump, but I wouldn't use it to make sure I was prepared for home.
At 9pm on Friday I took the Lortab and went to sleep. The pain wasn't touched. It got worse over the night as I promised myself to not use the pain pump. At 3am on Saturday, my nurse gave me 2 Lortab to try and curb the pain. It didn't work. At 5am I succumbed to using the pain pump. A few pumps of the pain pump and my nausea returns hard-core.
I beg for nausea meds and the nurse gave me some zofran at around 7am. Nothing. I ate nothing for breakfast besides forcing down a saltine cracker in order to get down a Percocet for pain. One step up on the pain meds.
I was miserable all morning, sweating and unable to move or open my eyes without feeling like I was going to vomit. Before lunch time my doc spoke with me and told me that he would like me to stay one more night so that we could get the mixture of pain meds and nausea meds just right while I had help available at my finger tips.
Around lunch time my nurse gave me Phenergen (sp?) for the nausea and it knocked me out all afternoon until dinner. I woke up at dinner and ate a few bites of food, took a walk around this wing of the hospital, and now I'm back in bed, taking more pain meds, ready to sleep the night away hopefully.
I don't remember if I mentioned it or not, but we got the pathology report back on the rest of the tumor they removed. The doc said it was much of the same, severe dysplasia, pre-cancerous, and that by having this surgery I was able to get clear margins, hoping that whatever the abnormal cell growth was will not spread to any other portion of my body. He said that he didn't see any signs of the mucous growth in my abdominal cavity, but that follow up appointments would be needed to make sure nothing took hold over time. Even still, we are going to gather all of my records and send them to a specialist in a type of rare cancer called PMP Syndrome and see what they say. Because of the growth that I had, I am at a higher risk for this disease.
Tomorrow will be day 6 in the hospital. I am determined to make it the last day I spend in the hospital for this surgery. As long as I can stomach the pain and nausea on the meds they give me, I just want to go home and be with Kari, River, Wren, and even my mother as she stays for a couple more days to help out. Back on the road to healing.
Wednesday, April 04, 2012
An Insides Story
As of Tuesday night I am lighter on my right side. The surgeon took out the right side of my large intestine and some of my small intestine. Looks like I will be confined to this hospital bed for a few more days. I am in a large amount of pain, and the pain med pump I am using only allows me to push the magic pain med button every 8 minutes. I count down the 8 minutes like I was waiting for the Megaball Millions lottery numbers to be broadcast. I have also been dealing with a lot of nausea, so I have been able to request zofran when it was needed in order for me to stomach chicken broth and water.
The surgeon said the surgery went well. I have two inch long incisions in my lower belly and a larger incision above my belly button. The reason they had to take some of my small intestines was because the incision from my appendix removal last month was sitting on top of my small intestines and had somehow fused to it during the healing process. They took the right side of the large intestine in order to make sure they got all of the associated lymph nodes and blood vessels.
We do not have a pathology report from the tumor yet. The doc said it will probably be a couple more days at least before we get the report. I may still be at the hospital by then, but, if I do good with recovery, they will let me go home earlier. I have to eat some solid food and have a bowel movement.
Thank you all for your thoughts and prayers! I am humbled by all of the people thinking about me. There are so many people out there dealing with issues much worse than mine, so I really do appreciate you. I should be back to normal sometime in the next couple of months.
Saturday, March 31, 2012
A Story About A Black Cloud
In the world of emergency medical services, there is a phenomenon called a black cloud. An EMT or Paramedic is said to have it when they get a bunch of really bad calls. When they are not around everything is fine. When they show up, the poop hits the fan.
I have been lucky enough to have a white cloud over me thus far. As you can guess, a white cloud is opposite of a black cloud.
That is up until about a month ago. If you have been reading my blogs or following on Facebook, you probably can tell I haven't had the greatest of luck lately when it comes to my health. It may not be EMS related, but the black cloud continued to hover overhead.
Last night I sat down on the couch for 30 minutes or so. I sat with my leg underneath me. When I got up, my knee gave out and I couldn't put any weight on it. "No problem" I thought. It will pass after a minute.
I hobbled around on it all night. This morning I woke up and tried to walk and it was excruciating! "c'mon..., really!?". Luckily I'm already on light duty here at work because of my abdomen, but I am still relegated to hiking the lower trails with my law enforcement pack.
On goes an old knee brace that I had and off I go to work. I am hobbling like a penguin, trying to curtail some of the pain. I cannot take any pain meds because of my surgery in a few days. Ugh...
For those of you that are superstitious, (I'm too cynical to be superstitious) lets hope that bad things come in threes. That would mean its all uphill from here.
I have been lucky enough to have a white cloud over me thus far. As you can guess, a white cloud is opposite of a black cloud.
That is up until about a month ago. If you have been reading my blogs or following on Facebook, you probably can tell I haven't had the greatest of luck lately when it comes to my health. It may not be EMS related, but the black cloud continued to hover overhead.
Last night I sat down on the couch for 30 minutes or so. I sat with my leg underneath me. When I got up, my knee gave out and I couldn't put any weight on it. "No problem" I thought. It will pass after a minute.
I hobbled around on it all night. This morning I woke up and tried to walk and it was excruciating! "c'mon..., really!?". Luckily I'm already on light duty here at work because of my abdomen, but I am still relegated to hiking the lower trails with my law enforcement pack.
On goes an old knee brace that I had and off I go to work. I am hobbling like a penguin, trying to curtail some of the pain. I cannot take any pain meds because of my surgery in a few days. Ugh...
For those of you that are superstitious, (I'm too cynical to be superstitious) lets hope that bad things come in threes. That would mean its all uphill from here.
Wednesday, March 28, 2012
A Story of Children, Pain, and the Never Ending Cough
After my appendix removal at the beginning of March, I was placed on some antibiotics. During the two weeks following, my family ran through a little cold, each of the boys and Kari were affected. They were all better when I took my last antibiotic pill. As soon as it wore off I could feel my throat swelling and my nose running.
Crap, I thought. Three days of a cold were in the cards. Not a big deal. I've had quite a good deal of colds in the past. Then, on day three of my spat with the germs, I helped work a controlled burn forest fire at the park. I spent all day in the smoke. And the cough began...
For the last 8or9 days, I have had a ferocious cough. Bad enough at night that I have had to sleep in the other room while Kari sleeps in our room with the boys. A sleeping arrangement that we will have to utilize for a while after my surgery next week.
I went to our doc yesterday and she said I was not infected with anything still, but that the cough was just lingering from the irritation. She prescribed some major cough medicine/knock you out at night syrup. It doesn't even touch the cough, and if it indicates it's "knock you outness", it is 10pm and I took it 3 hours ago and I am typing this blog at about 300 miles an hour.
Earlier tonight, when I laid River down in our bed so he could go to sleep I laid down beside him for a minute. He wanted some kisses, then, as he pulled up his covers and made himself comfortable, he reached over and grabbed two of my fingers with his little three year old hand. He whispered "hand", and proceeded to not let go. He laid like that until he started to fall asleep and couldn't keep his grip.
Moments like that are more than special. They are precious and fleeting. We have to enjoy them completely while we have them and keep them tucked away in our memories for when we don't.
I have surgery again next week. I hope to be rid of this cough, and I hope to be rid of the abdominal pain and precancerous cells soon. I hope to be back to normal ASAP! I know there are a lot of people out there much more sick than I am, but only one month in and I am sick of being the sick guy. I can't sleep in bed with my family, I can't throw my kids around or wrestle with them. I'm not supposed to even be picking them up, but I do it anyway. I have been over doing it at home and at work the last week or so in a desperate attempt for some normalcy before next week. The cost has been more pain than I expected. But it is all worth it for moments like tonight with River.
Crap, I thought. Three days of a cold were in the cards. Not a big deal. I've had quite a good deal of colds in the past. Then, on day three of my spat with the germs, I helped work a controlled burn forest fire at the park. I spent all day in the smoke. And the cough began...
For the last 8or9 days, I have had a ferocious cough. Bad enough at night that I have had to sleep in the other room while Kari sleeps in our room with the boys. A sleeping arrangement that we will have to utilize for a while after my surgery next week.
I went to our doc yesterday and she said I was not infected with anything still, but that the cough was just lingering from the irritation. She prescribed some major cough medicine/knock you out at night syrup. It doesn't even touch the cough, and if it indicates it's "knock you outness", it is 10pm and I took it 3 hours ago and I am typing this blog at about 300 miles an hour.
Earlier tonight, when I laid River down in our bed so he could go to sleep I laid down beside him for a minute. He wanted some kisses, then, as he pulled up his covers and made himself comfortable, he reached over and grabbed two of my fingers with his little three year old hand. He whispered "hand", and proceeded to not let go. He laid like that until he started to fall asleep and couldn't keep his grip.
Moments like that are more than special. They are precious and fleeting. We have to enjoy them completely while we have them and keep them tucked away in our memories for when we don't.
I have surgery again next week. I hope to be rid of this cough, and I hope to be rid of the abdominal pain and precancerous cells soon. I hope to be back to normal ASAP! I know there are a lot of people out there much more sick than I am, but only one month in and I am sick of being the sick guy. I can't sleep in bed with my family, I can't throw my kids around or wrestle with them. I'm not supposed to even be picking them up, but I do it anyway. I have been over doing it at home and at work the last week or so in a desperate attempt for some normalcy before next week. The cost has been more pain than I expected. But it is all worth it for moments like tonight with River.
Saturday, March 17, 2012
Out of the Woodwork - A Quaint Story About Irregular Cellular Division
Let me begin this short (long) story by saying that it is not over yet. Only just recently did Kari and I actually have some answers that we were someone satisfied with. And yes, this is a non-fiction story. I have been on and off pain meds while writing this, so I apologize in advance for any jumping around or dry paragraphs. It is hard to be creative while on pain meds!
In the end of February I began having some light abdomen pain. It wasn't in any particular spot, just all around, although it did spend a majority of it's time down the middle of my stomach. At first I suspected gas pain. I saw a doctor a couple of days in, and he said it was food related and to call if it gets any worse. After 5 days or so I was worried it was something else, but I kept it to myself. My Mom happened to be in town during this time.
Now, my mom has never been the nagging type, and neither has Kari, but in this instance I can definitely say it was a good thing. They both pushed me to go see a doctor a second time and get a second opinion. So I did, and I am glad I did. The Urgent Care Doc noticed I was tender when he pressed on my right side. He decided to send me to get a CT Scan that night to see if anything interesting showed up. He told me that if everything was alright they would let me go about my way, but if they found anything they would meet with me.
On to the CT Scan that I was surprised to be getting that night. I sat on the table that moved in and out of the big expensive donut and then it stopped moving. I waited.....and waited, and finally a nurse came in the room. She asked me to wait in a secondary waiting room. There I waited....and waited, and a doctor walked around the corner and said "Mr. Jenkins, I have your doctor on the phone, we would like to have a conversation with you." I walked to his office and the Urgent Care Doc was on speaker phone.
He told me that I had what looked to be a mucocele of the cecum and appendix, and that I needed to have it operated on the next day. After getting off the phone, the Doc I was with tried to explain it more to me. It is an extremely rare disease process in which a growth in the beginning section of the large intestine (where the cecum and appendix is located) fills with a mucus type substance. (The appendix makes a mucus substance, which fills the area behind the growth.) This shows up in something like 0.3% of appendix cases. I've read one in a million chance. I was surprised, but not worried or scared of anything at this point.
The next morning the Urgent Care Doc's Office called and said the surgeon needed to see us in his office something like two hours ago. So Kari and Wren and I rushed to the surgeons office while my Mom took care of River. (She was supposed to have left that day, but decided to stay a couple more days.) The surgeon said he was going to remove my appendix via lapendectomy that day and sent me off to the hospital to get admitted and to receive an IV of some antibiotics before surgery.
Kari's parents ended up taking River to their house and my Mom was able to come to the hospital to hang out and help Kari. Kari rushed out to take care of some last minute things before getting back to the hospital just before a rush of tornado warnings came through the County. The nurse even had to come in and move my bed and the chairs in my room away from the window for most of the afternoon. My surgery was delayed, and then delayed some more as thunderstorm after thunderstorm passed through the area. We had a nice birds eye view from the 5th story of the hospital.
At around 7pm that night they surgeon came and got me from my room. They told us that they couldn't do surgery while there were tornado warnings going on. I politely agreed, as I wouldn't want them to be poking around inside my belly and the power to conveniently go out or the roof to happened to blow off or something. They put me to sleep shortly thereafter, and the next thing I remember is being wheeled back into my hospital room. Our friend Melanie Sams was there with Kari, Wren, and my Mom. I don't remember much, but apparently I said "Hey Mel" about 100 times or something.
Early the next morning the surgeon came to my room to update us on the surgery. He said the surgery went well, and that he was able to remove my appendix. Then he uttered the statement that started our worrying.... "I have never seen anything like this before. It is highly unusual, so I sent it to pathology to see if it is malignant or benign." In a moment, I felt a rush of feeling flow through my veins that I had never expected to feel. I thought, "What? I am 31 years old. I am not supposed to be dealing with any type of cancerous stuff. I am a completely healthy guy, and my family history is spotless. As far as I know, my family is a race of super humans because I have never been told that there were any genetic health concerns to be worried about." As the surgeon left I was in a state of disbelief. Kari showed up with Wren shortly thereafter and I had to pass along the news to her. I could see the worry show up in her eyes at that moment as well.
Later that afternoon they let me go home with some pain pills and a nice pair of grippy bottomed socks. (They are grippy topped to, so I am not sure what that is for, unless you are spiderman.) During my time at home I did a lot of research on mucoceles of the appendix and cecum. They are so rare, that the only thing I could find were scientific papers in which doctors were trying to figure out the best way to remove the growths without spreading the possibly cancerous cells into the abdominal cavity. We waited a few days before going back to the surgeon for a report update. On the way there Kari and I told each other that we hoped it was nothing, but that knowing our luck, something else was going on.
I knew when we got there that something weird was going on, because we were the only people in the waiting room and I could hear the office workers saying "Where is his path report? Have we gotten it yet? I can't find it?". We get in the exam room and the surgeon comes in and reiterates to us how unusual the growth was. He said that he does over 300 appendix removals a year and has never seen anything like this. Then the nurse comes in and hands him a phone. It was the pathology department. They were calling about my path report. It was quite interesting sitting there listening to the doctor have a conversation with someone on the other line about me. The first wave of sickness hit me when he said to the person on the other end of the phone, "I know I didn't get the entire growth, because when I cut through it, I released some of the mucus inside of it." (According to all the research papers I had read, this was mistake numero uno when it came to removing these things. Releasing any of that mucus into the abdominal cavity created an interesting type of cancer in which the mucus keeps multiplying and filling the abdomen. Mistake numero dos was cutting the growth in half, exposing the edge of the growth.)
Once the surgeon got off the phone, he proceeded to tell us that the growth was called a cystadnoma with severe dysplasia. Severe dysplasia, he continued to tell us, was a pre-cancerous type of cell multiplication. There are different levels of dysplasia, and mine was the worst kind. Basically, if there is a line drawn in the sand between not cancerous and cancerous, the growth was sticking it's tip toes over the edge of the line. He said that due to the size of the tools he had available to him at the time, he was unable to remove all of the growth. He said either a cecotomy (removal of cecum) or complete right hemicolectomy (removal of right colon) would be needed to have clear margins and to make sure all of the growth was out of me before it turned cancerous. In order to see how involved my colon was he needed to schedule a colonoscopy.
So, at 31 years old I was preparing to do a colonoscopy. I had to watch a video instructing me on how to prepare, and it started with, "Now that you are 50 years old..." When colonoscopy-eve arrived, I began the prep. It was lovely, and that's all I will say. When I woke up from the procedure I had a horrible headache. The doc sat down and told us that a right hemicolectomy was definitely needed, and that it was probably needed sometime very soon. Prior to this procedure I had already began the process of getting an appointment with a GI surgeon at Vanderbilt Medical Center.
The next day, my headache had grown into a full blown migraine and was causing me to vomit. I took some pain meds left over from my appendectomy and we headed to the specialist at Vandy. Boy, was I glad we were urged to see a specialist. (When my boss first heard about what was happening, he strongly suggested that we see someone who only does colon surgery because any messing around with your colon affects your entire body system. He said that you do not want a general surgeon messing around with surgery in your colon.) We sat down with the specialist, handed him my remaining records and pictures from my colonoscopy, and he calmly described exactly how the next phase of the process would go. When I asked him if he had ever seen anything like this, he said that it was rare, but that yes, he had seen this before. He calmed some of our fears about the previous surgeon releasing mucus into my abdominal cavity by saying that while he was doing surgery, he would check to see if he saw any evidence of remaining mucus. He described my next surgery in detail. He will put me to sleep and then give me an "on the table" colonoscopy. He will get an inside view of the growth, then proceed with a laproscopic surgery using 4 incisions, each one for a special tool and a camera. Once he can figure out how much of my colon is involved he will either do a cecotomy or a full right hemicolectomy. All of this will take place on April 3rd. He was very confident that this will take care of the issue, and that the only follow up I needed was to get a CT scan in one year to make sure there was nothing else growing in my abdomen.
Now, such a long story all leads me to the title of this blog post. People have come out of the woodwork to help in any way from meals, to babysitting, to mowing our lawn, to movies to watch while I am laid up in bed. People that I didn't even think knew who I was have offered the statement "If you guys need anything, just let me know". We have been in so many people's prayers and thoughts that it blows my mind! My only worries are related to the mucus cell release in my abdomen, but in all reality I should be well on the way to recovery by May and this adventure will pass like so many others. But I want all of you to know that your kindness will not be forgotten. I want to say "thank you" to all of you from the deepest part of my heart. I do love all of you.
A photo from earlier in the day that my Mom and Kari pressed me to go get a second opinion and the CT scan found the growth in my cecum. I had been on a hike at work and took a photo of this tree inside the park. It is a landmark for those of us that hike the trails regularly. It is a tree that at some point in it's growing history, it was damaged or got some sort of disease, and instead of dying, the tree has developed a massive growth around the damaged section.
Saturday, February 25, 2012
A Day At The Park
Here is a quick video update, mostly with River. Wren doesn't have much action footage yet. He's getting there though!
The Boys' Cousin Mallory, Uncle Derek, and Aunt Mandy are in a few of the shots.
Enjoy!
Sunday, January 15, 2012
Ms Piggys Big Getaway
Kari and I decided that it would be a fun way to play with River by making a movie with him. Of course I went a little overboard and made a full length motion picture. Uncle Jim (Rivers Godfather) and River save the day from the crazy Miss Piggy!
Tuesday, January 10, 2012
Garden oh Eden
Our home is much like the garden of Eden from the old testament. Take away the nudity and fig leaves and we have a paradise here... Well, add the nudity back in because with two little boys there is plenty of that going around.
This week, possibly to our demise, the fall of man has commenced. River, obviously tempted by the talking snake we keep inside our house, climbed onto the kitchen counter and ate the fruit of the tree of good evil.
We feared the worst! Curses upon our household for sure! But nothing happened. No lightning or thunder. No animals eating each other. Not even any shame of nakedness! (they're little boys, they aren't ashamed of anything!).
Then we realized, it was just a tomatoe, that River thought was an apple. And as far as I know, even modern science can't figure out if the tomatoe is a fruit or veggie! (another argument for another day). So we wee saved by the skin of our teeth again here in the Jenkins adventure, and River learned the differences between a tomatoe and an apple!
This week, possibly to our demise, the fall of man has commenced. River, obviously tempted by the talking snake we keep inside our house, climbed onto the kitchen counter and ate the fruit of the tree of good evil.
We feared the worst! Curses upon our household for sure! But nothing happened. No lightning or thunder. No animals eating each other. Not even any shame of nakedness! (they're little boys, they aren't ashamed of anything!).
Then we realized, it was just a tomatoe, that River thought was an apple. And as far as I know, even modern science can't figure out if the tomatoe is a fruit or veggie! (another argument for another day). So we wee saved by the skin of our teeth again here in the Jenkins adventure, and River learned the differences between a tomatoe and an apple!
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