'Just got home from a post-surgery followup with my oncologist. I told her how things were going and that I plan to increase the water and fiber in my diet. I need to make sure that I do so that things downstairs continue to improve. We talked about another PET/CT scan at/near the end of treatment and, if the same uptake shows up downstairs, we'll go in for another colonoscopy to see what's what. (Like I said before, I don't think I can do this all over again... so I'm praying it goes away, completely.) We negotiated a restart date for chemo and agreed upon May 5th. That will be a Monday instead of my old Tuesday date, so I'll be missing my dinners out with my pals. No biggie.
That date makes my last chemo round the week of July 13-19. It seems so far off, but I'll get there. That date will also be just a month shy of when this all started. Talk about a year in the life of! I don't know what I'll do, but I think there may be a party.
A little closer though that date will also leave me free for some extracurricular activities.
Jody will be helping her friend Jolene at the Maryland Sheep & Wool Festival the weekend of the 3rd and 4th. Jolene is in the process of assuming ownership of a local knitting supply store and is hoping to kick off her tenure with success at the festival. I will probably tag along to help out too.
I am anxiously looking forward to the weekend of the 17th and 18th to get out of the house and camp with my track friends at the second V-Dub Deliverance weekend track event. I'm not planning to do much more than camp and socialize, but if I'm feeling good, I may try for a ride-along. I will bring my helmet just in case. ;)
Meanwhile, I'm trying to get out of the house more often now that I've got some confidence. The weather has been great but opening windows and puttering around the yard has not been enough. Yeah, the chemo will knock me down a bit but I know just how much and I'm sure I'll get through.
Friday, April 25, 2008
Monday, April 21, 2008
so far so good... and a little clarity
First things first. No, I will not be going back to my old job assignment but I am still employed. This may be a strange thing for the non-contractors out there to grasp. Essentially, I am a hired gun who gets sent to work a specific job for a while. Though I may work in someone's building, my paycheck comes from my company whom was contracted to put workers on a specific task. My specific task, the one I was really hoping to get back to soon, has been contracted to another company... so that means I have to stop and let someone from that company take over. I really really really liked that job, but I'm not being hung out to dry. I'll get to work something else now.
It's been a bit more than a week home now and, knock on wood, it's going okay. I'm eating pretty much anything I want now still saving uncooked fruits and vegetables. The liquid diet quickly changed to toast and some fiber much to my better comfort. I'm debating dinner out tonight with some friends, but I think I'll be okay. I've got to try it sometime!
It's been a bit more than a week home now and, knock on wood, it's going okay. I'm eating pretty much anything I want now still saving uncooked fruits and vegetables. The liquid diet quickly changed to toast and some fiber much to my better comfort. I'm debating dinner out tonight with some friends, but I think I'll be okay. I've got to try it sometime!
Wednesday, April 16, 2008
Potty training... or... Kick 'em when they're down
Greetings.
As you may imagine, I feel lousy thus the lame 60's Batman show title. I have to honestly admit that today has been okay so far but I got some pretty hard news to swallow; I will not be getting my job back.
No, despite the hoops I was jumping with the company and the long-term benefits insurance and the seriously invasive Social Security benefits claim "service," my contract was awarded to another team yesterday. I got the news this morning. Since my company isn't part of the team that won, I'm officially out of my job. I need to get well enough to go clean out my desk sometime soon.
I'm still employed... for the remaining whatever number of weeks my long term insurance was limited to... but I won't get to go back to my assignment. That one goal keeping me moving is now gone. This is just the icing on the poop cake I've been served. If it's not clear, I am not happy right now. Not in the least.
Here at home though I was able to clean and change the incision both Sunday and Monday evenings without any help. Knock on wood I've won more of the fights for control than lost and made it to the bathroom on time; no major disasters, thank you. It has dawned on me I may be potty-training all over again like when I was a little baby. It's not like it's a skill we are taught or even something babies can learn except by doing it. Gotta hold it. I think I'm just learning that all over again.
I'm trying to be funny about it but in all seriousness this whole thing is making me feel like less and less of a man every day. This crap just keeps pecking at me. :(
As you may imagine, I feel lousy thus the lame 60's Batman show title. I have to honestly admit that today has been okay so far but I got some pretty hard news to swallow; I will not be getting my job back.
No, despite the hoops I was jumping with the company and the long-term benefits insurance and the seriously invasive Social Security benefits claim "service," my contract was awarded to another team yesterday. I got the news this morning. Since my company isn't part of the team that won, I'm officially out of my job. I need to get well enough to go clean out my desk sometime soon.
I'm still employed... for the remaining whatever number of weeks my long term insurance was limited to... but I won't get to go back to my assignment. That one goal keeping me moving is now gone. This is just the icing on the poop cake I've been served. If it's not clear, I am not happy right now. Not in the least.
Here at home though I was able to clean and change the incision both Sunday and Monday evenings without any help. Knock on wood I've won more of the fights for control than lost and made it to the bathroom on time; no major disasters, thank you. It has dawned on me I may be potty-training all over again like when I was a little baby. It's not like it's a skill we are taught or even something babies can learn except by doing it. Gotta hold it. I think I'm just learning that all over again.
I'm trying to be funny about it but in all seriousness this whole thing is making me feel like less and less of a man every day. This crap just keeps pecking at me. :(
Friday, April 11, 2008
Surgery went well!
Hi all! Jody here to fill you in on John. He had surgery yesterday to reverse his ileostomy. I'm happy to say that everything went very well!
We had to get up extra early to arrive at GBMC hospital by 5:30 am. He was wheeled back into surgery around 8am and was finished by about 10:30. So - nice and short - not like last time!!
He had a great first day too - he ate all his lunch and dinner and had no nausea. He did have a rough night - but mostly because they kept coming in at all hours to take his vitals, blood, etc. He was definitely ready to come home - if only to get some sleep!
Today is a big day! It's John's first poo day! Happy poo day John! I told him I'd get him a cake for his first poo day - but the cake may have to wait a while as he is on a liquid diet for a while. Do you think I can write "Happy Poo Day" on some Jello? hehehe
More good news was just delivered as I was writing this. His doctor (Dr Grasso) just came to see him and he says he's ok to go home today! Yay! So - hopefully we will be out of here soon. That is fantastic news!
Thanks to everyone for their thoughts and prayers - we appreciate all of them.
-Jody
We had to get up extra early to arrive at GBMC hospital by 5:30 am. He was wheeled back into surgery around 8am and was finished by about 10:30. So - nice and short - not like last time!!
He had a great first day too - he ate all his lunch and dinner and had no nausea. He did have a rough night - but mostly because they kept coming in at all hours to take his vitals, blood, etc. He was definitely ready to come home - if only to get some sleep!
Today is a big day! It's John's first poo day! Happy poo day John! I told him I'd get him a cake for his first poo day - but the cake may have to wait a while as he is on a liquid diet for a while. Do you think I can write "Happy Poo Day" on some Jello? hehehe
More good news was just delivered as I was writing this. His doctor (Dr Grasso) just came to see him and he says he's ok to go home today! Yay! So - hopefully we will be out of here soon. That is fantastic news!
Thanks to everyone for their thoughts and prayers - we appreciate all of them.
-Jody
Sunday, April 6, 2008
For Jody
Today is the fifth anniversary of our wedding date. So much has happened in our lives since then with the reason for this blog only being the latest. I want to take this time to express just what being married to Jody has meant to me.
Little did I know I was exchanging emails with the girl I'd marry and come to love so much. I was pretty selfish in those days. Who am I kidding? I still am. Getting to know one another before we actually met, she wrote and asked me a poignant question that still makes me think to this day. Her question was, "What makes you smile?"
I do not honestly remember my answer but I do remember it made me think. We met at a local Thai restaurant based solely on the discovery that neither of us had really ever tried that kind of food. I remember trying very hard to not monopolize the conversation in response to being nervous about meeting her for the first time. She told me later she tried very hard not to judge me based upon the ugly sweater I was wearing; my favorite sweater at the time.
I began to learn and like more and more about her and within only a few months of dating, we arranged to vacation together in London. It was my first real trip outside the country since I was a kid and really only my first vacation as a grownup. We traveled well together and had a blast. Coming home though, I realized I'd been pursuing her for the wrong reasons and we broke up about a month later.
Then realizing my mistake I apologized for what I'd done and asked if we could start over. This was one of the first times of many I would see that Jody knew how to truly forgive an offense.
Our politics differed on the surface and she'll be the last to admit we really agree on what solutions we'd rather see to so many issues. We dated for another two years more taking in more new experiences and tastes and it dawned upon me that I could not remember life without her. Much less even want to live life without her.
You know the story of how I proposed and though I tried to make it memorable, I know she'd have said yes even if I'd asked while washing dishes or waiting for a light to turn green.
Our wedding day was a small miracle sandwiched in between two nasty days of cold rain and sleet. Our honeymoon was another adventure just adding to the memories we've collected together. Returning home, marriage began and we had some adjusting to do.
Jody has been so much better at it than I have, I am sorry to admit. And she has endured so much in just these short five years. I wish above all else that I could take some of those times away; not for my own comfort but for hers. She is one tough girl to have not only withstood those storms, but to have stayed beside me and steadied me when I've been shaken. I've said it before and I will say it again... I can never repay her the debt that I owe and I pray I never have to. She has been through enough already with me.
Yes, -through- all of those and stronger than ever. She is many things to me beyond my brave taste tester, tourguide, and girlfriend. She is more than my date for an evening or my fiance planning our wedding. She is more than the girl who read stories to me until I fell asleep or the hand I grab when we're climbing a hill looking for buried treasure. She is more than my nurse as we both ride out this mind numbing cancer treatment.
She is my best friend and the one person I need to see or talk to every day. She is uncommonly strong and resilient against the worst. She is faithful and loving and beautiful and fun and she deserves better than me. She is my wife and I love her more than I can ever say.
I love you, my Sweets. I am honored to be your husband.
Little did I know I was exchanging emails with the girl I'd marry and come to love so much. I was pretty selfish in those days. Who am I kidding? I still am. Getting to know one another before we actually met, she wrote and asked me a poignant question that still makes me think to this day. Her question was, "What makes you smile?"
I do not honestly remember my answer but I do remember it made me think. We met at a local Thai restaurant based solely on the discovery that neither of us had really ever tried that kind of food. I remember trying very hard to not monopolize the conversation in response to being nervous about meeting her for the first time. She told me later she tried very hard not to judge me based upon the ugly sweater I was wearing; my favorite sweater at the time.
I began to learn and like more and more about her and within only a few months of dating, we arranged to vacation together in London. It was my first real trip outside the country since I was a kid and really only my first vacation as a grownup. We traveled well together and had a blast. Coming home though, I realized I'd been pursuing her for the wrong reasons and we broke up about a month later.
Then realizing my mistake I apologized for what I'd done and asked if we could start over. This was one of the first times of many I would see that Jody knew how to truly forgive an offense.
Our politics differed on the surface and she'll be the last to admit we really agree on what solutions we'd rather see to so many issues. We dated for another two years more taking in more new experiences and tastes and it dawned upon me that I could not remember life without her. Much less even want to live life without her.
You know the story of how I proposed and though I tried to make it memorable, I know she'd have said yes even if I'd asked while washing dishes or waiting for a light to turn green.
Our wedding day was a small miracle sandwiched in between two nasty days of cold rain and sleet. Our honeymoon was another adventure just adding to the memories we've collected together. Returning home, marriage began and we had some adjusting to do.
Jody has been so much better at it than I have, I am sorry to admit. And she has endured so much in just these short five years. I wish above all else that I could take some of those times away; not for my own comfort but for hers. She is one tough girl to have not only withstood those storms, but to have stayed beside me and steadied me when I've been shaken. I've said it before and I will say it again... I can never repay her the debt that I owe and I pray I never have to. She has been through enough already with me.
Yes, -through- all of those and stronger than ever. She is many things to me beyond my brave taste tester, tourguide, and girlfriend. She is more than my date for an evening or my fiance planning our wedding. She is more than the girl who read stories to me until I fell asleep or the hand I grab when we're climbing a hill looking for buried treasure. She is more than my nurse as we both ride out this mind numbing cancer treatment.
She is my best friend and the one person I need to see or talk to every day. She is uncommonly strong and resilient against the worst. She is faithful and loving and beautiful and fun and she deserves better than me. She is my wife and I love her more than I can ever say.
I love you, my Sweets. I am honored to be your husband.
Wednesday, April 2, 2008
Are we there yet?
Can I once again tell you all just how tired I am of this whole deal? Yeesh...
Yesterday was a waypoint. I had appointments for a pre-surgery checkup and a post-round-6 oncology visit. I've been getting more absent minded and left my pre-surgery papers at home (five minutes away) and no matter how many times I offered, they wouldn't let me leave to go retrieve them. Finally, after calling the wrong surgeon, they let me jog back home and grab the one page order sheet... maybe the chemo is affecting other people. ;)
The oncology visit held the promise of PET/CT results...
There was good news and meh news. The good news is the metastases seen back in August are gone except for a handful in my lungs too small to characterize. The meh news is there was "uptake" (sugar that looks like cancer cells chowing down) at the very site of the j-pouch. No firm explanation was given though the analyst noted the site had lots of sutures while also noting other sites with sutures didn't uptake this same way. My optimism is running thin but is giving me hope that since that site had to be worked on for so much longer than the others, maybe it's just taking longer to fully heal and the uptake there is just evidence of healing still going on; not to mention healing has been slowed by chemo. But there is the possibility that not all of the tumor was removed. My optimism rebuts with yeah, sure, but my CEA is now too low to measure and all the metastatic spread is gone. I can't be sure and I'm praying through tears that it's just slow healing. I don't think I can do this all over again.
Even if that's the case, I still have work to do. One of the things I need to try to share is what I learned about Lynch Syndrome. Dr. Lee had asked me if I had any siblings or children because she'd learned of a DNA test that could help identify anyone related to me at risk for the same crap. In a matter of minutes, I read through the literature from Myriad (the lab that does the test) and was stunned.
There is a genetic mutation that, if present, poses an 80% likelihood of that person developing colo-rectal or endometrial cancer well before age 50 like most screening recommendations suggest. Finding it early may mean more frequent colonoscopies for that person, but it may also mean no surgical gauntlet like the one I'm running.
Myriad is also able to test for other genetic markers that may indicate other cancers like melanoma, pancreatic, ovarian, and breast cancers. Please visit their website and drop through the Hereditary Cancer Testing side for Patients and Caregivers. They have some brief questionnaires that can help you determine if you ought to have your doctor order one or more of the tests. For those of us who don't have or can't get family health histories, these tests may mean we're able to stop the train before we get to the bridge that's out.
Meanwhile, back in Real Life, Jody had to fly away at the drop of a hat to New Orleans for some hands on help. Her superiors had known the request was pending but did not manage to get her the specifics until the day before she was needed there. This on the eve of our fifth anniversary and me heading in for the reversal surgery. No, she was not going to be able to stay for two weeks. Had no one even looked at her calendar?
Even that got off to a bumpy start. I'm already lonely and chemo-bummed but now I lose my wife for the week. :( Want some more bumps? Jody's teammate, Wes, was to go along as well but the poor guy had an acute attack of something serious after I got them to the airport. The poor guy lost his lunch before boarding and wisely decided to stay home. I ran back up to get him home and we only made it halfway. I felt so bad for him and was genuinely weighing whether I should continue home or take him to the hospital. Turns out the rest of his family came down with it too after a younger member brought it home over the weekend. I really hope he's doing better... and that Southwest will manage to get his bags back to him.
On the brighter side of things, I've learned my young friend, Bree, is not only back in the US but is doing well at one of Johns Hopkins facilities. I don't know where yet, but she's had visitors and I mean to find out where she's at and go see her myself. She's got a port now, just like me, and she's not feeling very hungry, just like me. I want to encourage her and her brother and acknowledge what I know the whole family is feeling; this is not fair. But while that's true, we can put our faith in believing that it is where we're supposed to be and what we're supposed to be doing. And God has a way of assuring us of this too so even though I might be scared about that ambiguity on my PET/CT report, I can ask for help to get me through. I hope I can show that to Bree. Who knows? Maybe she's going to help me instead? :')
Please, pray for us. And I need to ping Dave again to see where he's at too.
Yesterday was a waypoint. I had appointments for a pre-surgery checkup and a post-round-6 oncology visit. I've been getting more absent minded and left my pre-surgery papers at home (five minutes away) and no matter how many times I offered, they wouldn't let me leave to go retrieve them. Finally, after calling the wrong surgeon, they let me jog back home and grab the one page order sheet... maybe the chemo is affecting other people. ;)
The oncology visit held the promise of PET/CT results...
There was good news and meh news. The good news is the metastases seen back in August are gone except for a handful in my lungs too small to characterize. The meh news is there was "uptake" (sugar that looks like cancer cells chowing down) at the very site of the j-pouch. No firm explanation was given though the analyst noted the site had lots of sutures while also noting other sites with sutures didn't uptake this same way. My optimism is running thin but is giving me hope that since that site had to be worked on for so much longer than the others, maybe it's just taking longer to fully heal and the uptake there is just evidence of healing still going on; not to mention healing has been slowed by chemo. But there is the possibility that not all of the tumor was removed. My optimism rebuts with yeah, sure, but my CEA is now too low to measure and all the metastatic spread is gone. I can't be sure and I'm praying through tears that it's just slow healing. I don't think I can do this all over again.
Even if that's the case, I still have work to do. One of the things I need to try to share is what I learned about Lynch Syndrome. Dr. Lee had asked me if I had any siblings or children because she'd learned of a DNA test that could help identify anyone related to me at risk for the same crap. In a matter of minutes, I read through the literature from Myriad (the lab that does the test) and was stunned.
There is a genetic mutation that, if present, poses an 80% likelihood of that person developing colo-rectal or endometrial cancer well before age 50 like most screening recommendations suggest. Finding it early may mean more frequent colonoscopies for that person, but it may also mean no surgical gauntlet like the one I'm running.
Myriad is also able to test for other genetic markers that may indicate other cancers like melanoma, pancreatic, ovarian, and breast cancers. Please visit their website and drop through the Hereditary Cancer Testing side for Patients and Caregivers. They have some brief questionnaires that can help you determine if you ought to have your doctor order one or more of the tests. For those of us who don't have or can't get family health histories, these tests may mean we're able to stop the train before we get to the bridge that's out.
Meanwhile, back in Real Life, Jody had to fly away at the drop of a hat to New Orleans for some hands on help. Her superiors had known the request was pending but did not manage to get her the specifics until the day before she was needed there. This on the eve of our fifth anniversary and me heading in for the reversal surgery. No, she was not going to be able to stay for two weeks. Had no one even looked at her calendar?
Even that got off to a bumpy start. I'm already lonely and chemo-bummed but now I lose my wife for the week. :( Want some more bumps? Jody's teammate, Wes, was to go along as well but the poor guy had an acute attack of something serious after I got them to the airport. The poor guy lost his lunch before boarding and wisely decided to stay home. I ran back up to get him home and we only made it halfway. I felt so bad for him and was genuinely weighing whether I should continue home or take him to the hospital. Turns out the rest of his family came down with it too after a younger member brought it home over the weekend. I really hope he's doing better... and that Southwest will manage to get his bags back to him.
On the brighter side of things, I've learned my young friend, Bree, is not only back in the US but is doing well at one of Johns Hopkins facilities. I don't know where yet, but she's had visitors and I mean to find out where she's at and go see her myself. She's got a port now, just like me, and she's not feeling very hungry, just like me. I want to encourage her and her brother and acknowledge what I know the whole family is feeling; this is not fair. But while that's true, we can put our faith in believing that it is where we're supposed to be and what we're supposed to be doing. And God has a way of assuring us of this too so even though I might be scared about that ambiguity on my PET/CT report, I can ask for help to get me through. I hope I can show that to Bree. Who knows? Maybe she's going to help me instead? :')
Please, pray for us. And I need to ping Dave again to see where he's at too.
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