It's amazing how time flies. After my last update, I had thought that I would want to provide some sort of status before now. At some point, though, you hit a line where you realize typing an update is pointless when you have a set guidepost in front of you. In this case, I had a three-month follow up after some CT scans, and that seemed like a good post to check in from.
In short, the best way to put it is that a new normal has emerged, and I'm basically in it. I'm working, have gotten into a routine with the bag, and had a good follow up visit this past week. In all of this, I've gone to North Carolina twice. Once for a wedding, and once to celebrate the life of my amazing Grandmother who passed away last month I've seen friends, family, and seen friends move away. In all of that, I passed the one year mark of my official diagnosis on Saturday.
Let's start with right after my last post, where most of the action is. The trip to North Carolina for the wedding and to see my family went about 90% well. It was my first experience in flying with the new apparatus, as it were, and it turns out the folks at the TSA can handle this sort of stuff well. You just tell them before you go through the scanner you have an ostomy bag, and they have an easy process to test it and make sure you aren't an extra threat. It didn't add a lot of time to the screening, and at both Boston and RDU, it was handled very efficiently. I was able to go to the welcoming party, the wedding itself, and reception without any incidents.
I can't tell you what it did to my spirits to have so many of my friends come up to me and tell me how happy they were for me. I'm not doing the event justice, to be honest. Everyone somehow managed to walk that great line of wanting to know how I was, wishing me well, but not dwelling on it to the point where I felt like I was repeating myself. I even was able to consume alcohol for the first time, although it turned out clear liquor did better in my system than brown and beer. Staying on site and not having to worry about driving also did wonders, and I was able to withstand a lot of the walking required for all of the get togethers.
I can't tell you what it did to my spirits to have so many of my friends come up to me and tell me how happy they were for me. I'm not doing the event justice, to be honest. Everyone somehow managed to walk that great line of wanting to know how I was, wishing me well, but not dwelling on it to the point where I felt like I was repeating myself. I even was able to consume alcohol for the first time, although it turned out clear liquor did better in my system than brown and beer. Staying on site and not having to worry about driving also did wonders, and I was able to withstand a lot of the walking required for all of the get togethers.
From there, we traveled to Louisburg to see my brother, sister in law, and two nieces for the first time since I was diagnosed. Again, it was great. The love you get from friends is one thing, but the warm embrace from family is another, and it was great to finally see them after they had been cheering me from the sidelines for the past year. It was at this point of the trip, however, that the 10% that was an issue started to show up
It really started with the end of the trip. I noticed as we were getting ready that the bag I had on didn't seem to want to adhere correctly, and it appeared to be leaking. Luckily, I had noticed prior to it causing any real issues and attempted to change it. We packed up and left, hit the road, and got to RDU when I stopped to fill up the rental car. When I got out, I again noticed leakage coming from the side of the bag, and this time it created some staining on my clothes. I cleaned myself up and changed to another bg, as well as changed clothes, all in the gas station bathroom. It created a harried situation as we were in a rush once we got to the airport and I was now worried if anything would hold.
We made it through security and I went to the restroom again to check the status and yet again it was leaking. I changed one more time at the airport, and then once I was on the airplane I made frequent trips to the restroom to make sure I didn't have any other incidents. I barely made it.
It turns out that I had developed a fungal infection around the site, which had made the skin "weepy," and this was complicated by the fact that I had forgotten to bring a special powder with me that's made specifically for instances like this. I thought once I got home and had access to this powder I could fix the issue myself, but the infection had now made this impossible. I ended up having to go back to Beth Israel to see a wound/ostomy nurse. I was fortunate that they were able to squeeze me in, and while there I was prescribed a new powder meant to kill the infection. The bag applied by the nurse held, and I'm proud to report that since then I have not had any incidents.
The incident delayed my return to work by a day, but I am now fully back in the grind with the job, with one change. My return was only green lit if I could start at home, because the doctors wanted me to be able to ease back into life instead of having to jump back into the routine with both legs. Plus, if there were any issues I'd be able to more easily address them. For the longest time I had resisted working from home because of the smallness of space in our apartment, and the fact that at the office I have the use of three total screens for the job, whereas at home I could only use one due to space.
It turns out-I don't need the monitors to do what I do. I quickly adjusted to doing the job with the laptop only, and the quality of the work remained as high as it was before the surgery. I realized that staying at home allowed me to sleep in an extra hour each day, saved a ton of wear and tear on the car, and allowed me to be "done" an hour earlier each day because I no longer had the commute home where I would also do errands. My lunch hour became the time for me to do those errands.
The biggest negatives are that I'm not as active as I was before, and that I'm in Kathleen's hair a lot more. Thus, we have an understanding. If there's a day that Kathleen works or has plans to be out for a good chunk of the day, I'll stay home. If, though, she has a complete day off during the week, I'll drive into the office so she can have a day without worry about tip toeing around me. So I've been back to the office a couple of times, but the vast majority of the time I'm working from home and really enjoying it.
In July, the last vestige of my treatment was removed: the port that was in my chest. The device that made the delivery of the chemotherapy easier had served its purpose, and after one quick outpatient surgery only a scar remains of that little plastic port. Needless to say, I don't miss it.
By the time August rolled around, things had mostly settled into a new normal. I even had a new accessory: a waistband that has a pocket for my bag which allows me to walk around in public without fear that someone will get an accidental view of my new appliance. Kat and I were able to celebrate our anniversary in style, with a great dinner out. Unfortunately, around this time we also got the news that my grandmother passed away.
The relative suddenness of her death made it to where it made more sense for us to drive down instead of trying to buy last second airplane tickets. Unlike the first trip, this one had no incidents with the bag, and we were able to celebrate the life of an amazing woman. It was great to see family that I hadn't seen in a long time, and to once again feel the support in person that they had been providing with me from a distance. I hated the circumstances that brought us together, but it was great to see everyone nonetheless.
August also brought a visit to a genetic counselor where I actually sat and learned more about the condition that...hadn't been confirmed.
Yeah, about that whole Lynch Syndrome thing. It turns out that it had never been 100% confirmed that I had the disorder. To be fair, I think this had been explained to me at some point, but it likely got lost in the other swirl of info. Sitting with the genetic counselor, I finally learned more about the actual condition. In short, when our bodies make new cells, they make copies of cells that had been copied before. When that happens, defects happen, but we all have genes that are supposed to go in and fix those defects. When you have Lynch Syndrome, you are missing some of those genes that do this, and those missing genes can eventually lead to a higher risk of several cancers, the biggest one, by far, being colorectal.
The only way to 100% confirm you have it is by a blood test, but results take at least six weeks to come in, and when it was discovered my cancer was Stage 3, there wasn't time to test and wait for a result. You also can't do the blood test once you start treatment because the chemo drugs and radiation will dirty the result. Then the surgery has to happen within two months at most of the end of radiation, which stays in your system for about two months, again, dirtying any potential result. It was a Catch-22 that meant the doctors had to proceed like I had the disorder.
So how were they so confident I had it? Well, the missing genes showed up in the biopsy, and then a secondary look showed that there were other missing items that one sees when you have Lynch Syndrome. Add to that the fact that I had zero other polyps in my intestine while this one grew relatively rapidly, and it added up to there being a pretty strong likelihood I had it. Think of it this way: your car's gas light comes on, and then the engine starts to sputter. Yeah, you could have other issues, but you have pretty ample evidence that your car is low on gas. You could drive it until it's completely dead and have someone put a camera in the tank to make sure it's out of gas before filling it up, but you're going to not incur that extra expense, so you just go ahead and fill up the tank. Once you do, the light is gone and the engine stops sputtering.
Thus, the biopsy was the gas light/engine sputtering for these doctors who specialize in this type of cancer. They "filled the gas tank" with the course of chemotherapy and radiation like I had Lynch Syndrome, and my body responded exactly as they thought it would, ie, the gas light went off and no more engine sputtering. Thus, they felt safe in acting like I had it. At first I was a little upset at the decision I made to remove the intestine because I had always assumed I just had it, but then I remembered them stressing to me before the surgery that I absolutely could have chosen to just have the tumor removed and there wasn't a "wrong" decision. Also remember, back in June both the colorectal surgeon and oncologist told me that in the end they thought I made the correct decision, even if there wasn't a "wrong" decision to make. Dr. Schlecter said it again this past week, so at this point we're just waiting for official word mostly to determine if others in my direct family need to be tested for this. I'm at the point where that answer will literally come any day now.
The past couple of weeks have seen a proper birthday celebration for Kathleen, one without the specter of cancer hanging over us, as well as a well-deserved promotion for her. I also had the first of my maintenance CT scans, something I'm going to have to do with some regularity for the next five years. The good news is that since there isn't a large intestine in my body anymore, that will be the only maintenance testing I'll have to put up with. On Wednesday, we went to Beth Israel to meet back up with the team to get those results and check in on my status.
The meeting actually came one year to the day of the initial colonoscopy that first discovered the tumor. To say it's amazing all that's occurred in one year is an understatement. To go from on the table with a tumor to being three months in remission is..something.
As for the appointment itself, it mostly went well. The important part is that the CT scans were clear and there is nothing new to report, thus I am still in remission. I wish the meeting with the ostomy nurse had gone better, but it's a minor quibble that I won't go into. Dr. Schlecter did drop the news that he's moving on from Beth Israel over to Dana Farber, which is a huge loss for BI but a great gain for DF. He made it clear that he's still available to me if I still need to chat, and he's had a direct hand with the people that will still be in the colorectal oncology department at BI should I need them. We chatted for a little while about how things had been for me physically and emotionally, and he reminded me that they did A LOT to me during this past year. He casually mentioned that the process "aged me by about five years" in a lot of ways, which was his way of saying to not be alarmed if a few things weren't quite the same way they were before this all started.
The meeting with my surgeon also mostly went well. He was very positive and pleased with how things were going with me overall, and how well things had basically improved since June. The negative was...well...I mentioned that the surgery required two incisions, one in the front and one in the back to seal that exit. That rear surgery required stitches that had to naturally dissolve due to their placement, but they hadn't quite healed all the way. He happened to have a student/resident with him on this visit and he did an outstanding job of pointing out when he was about to ask the student a question for the process of her education. The manor he did that with put me at ease, except the part during the inspection of these wounds-which required me to be at a kneel on at exam table for the best view-to hear the student say the best treatment was to cauterize the wound. Next thing I know, they are indeed cauterizing the wound.
Sitting didn't exact feel comfortable for the next couple of days.
Still, Kat and I celebrated the one year mark with a visit to Fenway Park on a crisp fall evening with plenty of Octoberfest consumed before and during. Last year, I wasn't really able to enjoy the beer because of the treatment and so I've made it a point to enjoy what I can this year.
This morning, I woke up with the Facebook reminder that today is when I got the official cancer diagnosis. I knew this because on the same day, I went to go see Hamilton in Boston, and had to vaguely allude to what was going on because I hadn't yet met with the team. The occasion caused me to go back and read the first entry I made in this cancer blog. I laughed at how many times I joked about my large intestine jumping out of my body with the testing, and I cried when I realized where my mind was as I typed that out and where I am now.
This may be the last entry for a while. In a lot of ways, life has returned to such a sense of normal that I don't know if there's anything else I'll need to update you about. Over the next few weeks I'll probably be going back and reminding myself of the steps I took in this journey. If you want to know where things stand, feel free to reach out and ask, and as always if you find yourself asking "How can I help," the GoFundMe started by Adam is still up and running. I couldn't have made it through this year without all of your love, support, and help. Thank you.
One year down, hopefully many more to go.
We made it through security and I went to the restroom again to check the status and yet again it was leaking. I changed one more time at the airport, and then once I was on the airplane I made frequent trips to the restroom to make sure I didn't have any other incidents. I barely made it.
It turns out that I had developed a fungal infection around the site, which had made the skin "weepy," and this was complicated by the fact that I had forgotten to bring a special powder with me that's made specifically for instances like this. I thought once I got home and had access to this powder I could fix the issue myself, but the infection had now made this impossible. I ended up having to go back to Beth Israel to see a wound/ostomy nurse. I was fortunate that they were able to squeeze me in, and while there I was prescribed a new powder meant to kill the infection. The bag applied by the nurse held, and I'm proud to report that since then I have not had any incidents.
The incident delayed my return to work by a day, but I am now fully back in the grind with the job, with one change. My return was only green lit if I could start at home, because the doctors wanted me to be able to ease back into life instead of having to jump back into the routine with both legs. Plus, if there were any issues I'd be able to more easily address them. For the longest time I had resisted working from home because of the smallness of space in our apartment, and the fact that at the office I have the use of three total screens for the job, whereas at home I could only use one due to space.
It turns out-I don't need the monitors to do what I do. I quickly adjusted to doing the job with the laptop only, and the quality of the work remained as high as it was before the surgery. I realized that staying at home allowed me to sleep in an extra hour each day, saved a ton of wear and tear on the car, and allowed me to be "done" an hour earlier each day because I no longer had the commute home where I would also do errands. My lunch hour became the time for me to do those errands.
The biggest negatives are that I'm not as active as I was before, and that I'm in Kathleen's hair a lot more. Thus, we have an understanding. If there's a day that Kathleen works or has plans to be out for a good chunk of the day, I'll stay home. If, though, she has a complete day off during the week, I'll drive into the office so she can have a day without worry about tip toeing around me. So I've been back to the office a couple of times, but the vast majority of the time I'm working from home and really enjoying it.
In July, the last vestige of my treatment was removed: the port that was in my chest. The device that made the delivery of the chemotherapy easier had served its purpose, and after one quick outpatient surgery only a scar remains of that little plastic port. Needless to say, I don't miss it.
By the time August rolled around, things had mostly settled into a new normal. I even had a new accessory: a waistband that has a pocket for my bag which allows me to walk around in public without fear that someone will get an accidental view of my new appliance. Kat and I were able to celebrate our anniversary in style, with a great dinner out. Unfortunately, around this time we also got the news that my grandmother passed away.
The relative suddenness of her death made it to where it made more sense for us to drive down instead of trying to buy last second airplane tickets. Unlike the first trip, this one had no incidents with the bag, and we were able to celebrate the life of an amazing woman. It was great to see family that I hadn't seen in a long time, and to once again feel the support in person that they had been providing with me from a distance. I hated the circumstances that brought us together, but it was great to see everyone nonetheless.
August also brought a visit to a genetic counselor where I actually sat and learned more about the condition that...hadn't been confirmed.
Yeah, about that whole Lynch Syndrome thing. It turns out that it had never been 100% confirmed that I had the disorder. To be fair, I think this had been explained to me at some point, but it likely got lost in the other swirl of info. Sitting with the genetic counselor, I finally learned more about the actual condition. In short, when our bodies make new cells, they make copies of cells that had been copied before. When that happens, defects happen, but we all have genes that are supposed to go in and fix those defects. When you have Lynch Syndrome, you are missing some of those genes that do this, and those missing genes can eventually lead to a higher risk of several cancers, the biggest one, by far, being colorectal.
The only way to 100% confirm you have it is by a blood test, but results take at least six weeks to come in, and when it was discovered my cancer was Stage 3, there wasn't time to test and wait for a result. You also can't do the blood test once you start treatment because the chemo drugs and radiation will dirty the result. Then the surgery has to happen within two months at most of the end of radiation, which stays in your system for about two months, again, dirtying any potential result. It was a Catch-22 that meant the doctors had to proceed like I had the disorder.
So how were they so confident I had it? Well, the missing genes showed up in the biopsy, and then a secondary look showed that there were other missing items that one sees when you have Lynch Syndrome. Add to that the fact that I had zero other polyps in my intestine while this one grew relatively rapidly, and it added up to there being a pretty strong likelihood I had it. Think of it this way: your car's gas light comes on, and then the engine starts to sputter. Yeah, you could have other issues, but you have pretty ample evidence that your car is low on gas. You could drive it until it's completely dead and have someone put a camera in the tank to make sure it's out of gas before filling it up, but you're going to not incur that extra expense, so you just go ahead and fill up the tank. Once you do, the light is gone and the engine stops sputtering.
Thus, the biopsy was the gas light/engine sputtering for these doctors who specialize in this type of cancer. They "filled the gas tank" with the course of chemotherapy and radiation like I had Lynch Syndrome, and my body responded exactly as they thought it would, ie, the gas light went off and no more engine sputtering. Thus, they felt safe in acting like I had it. At first I was a little upset at the decision I made to remove the intestine because I had always assumed I just had it, but then I remembered them stressing to me before the surgery that I absolutely could have chosen to just have the tumor removed and there wasn't a "wrong" decision. Also remember, back in June both the colorectal surgeon and oncologist told me that in the end they thought I made the correct decision, even if there wasn't a "wrong" decision to make. Dr. Schlecter said it again this past week, so at this point we're just waiting for official word mostly to determine if others in my direct family need to be tested for this. I'm at the point where that answer will literally come any day now.
The past couple of weeks have seen a proper birthday celebration for Kathleen, one without the specter of cancer hanging over us, as well as a well-deserved promotion for her. I also had the first of my maintenance CT scans, something I'm going to have to do with some regularity for the next five years. The good news is that since there isn't a large intestine in my body anymore, that will be the only maintenance testing I'll have to put up with. On Wednesday, we went to Beth Israel to meet back up with the team to get those results and check in on my status.
The meeting actually came one year to the day of the initial colonoscopy that first discovered the tumor. To say it's amazing all that's occurred in one year is an understatement. To go from on the table with a tumor to being three months in remission is..something.
As for the appointment itself, it mostly went well. The important part is that the CT scans were clear and there is nothing new to report, thus I am still in remission. I wish the meeting with the ostomy nurse had gone better, but it's a minor quibble that I won't go into. Dr. Schlecter did drop the news that he's moving on from Beth Israel over to Dana Farber, which is a huge loss for BI but a great gain for DF. He made it clear that he's still available to me if I still need to chat, and he's had a direct hand with the people that will still be in the colorectal oncology department at BI should I need them. We chatted for a little while about how things had been for me physically and emotionally, and he reminded me that they did A LOT to me during this past year. He casually mentioned that the process "aged me by about five years" in a lot of ways, which was his way of saying to not be alarmed if a few things weren't quite the same way they were before this all started.
The meeting with my surgeon also mostly went well. He was very positive and pleased with how things were going with me overall, and how well things had basically improved since June. The negative was...well...I mentioned that the surgery required two incisions, one in the front and one in the back to seal that exit. That rear surgery required stitches that had to naturally dissolve due to their placement, but they hadn't quite healed all the way. He happened to have a student/resident with him on this visit and he did an outstanding job of pointing out when he was about to ask the student a question for the process of her education. The manor he did that with put me at ease, except the part during the inspection of these wounds-which required me to be at a kneel on at exam table for the best view-to hear the student say the best treatment was to cauterize the wound. Next thing I know, they are indeed cauterizing the wound.
Sitting didn't exact feel comfortable for the next couple of days.
Still, Kat and I celebrated the one year mark with a visit to Fenway Park on a crisp fall evening with plenty of Octoberfest consumed before and during. Last year, I wasn't really able to enjoy the beer because of the treatment and so I've made it a point to enjoy what I can this year.
This morning, I woke up with the Facebook reminder that today is when I got the official cancer diagnosis. I knew this because on the same day, I went to go see Hamilton in Boston, and had to vaguely allude to what was going on because I hadn't yet met with the team. The occasion caused me to go back and read the first entry I made in this cancer blog. I laughed at how many times I joked about my large intestine jumping out of my body with the testing, and I cried when I realized where my mind was as I typed that out and where I am now.
This may be the last entry for a while. In a lot of ways, life has returned to such a sense of normal that I don't know if there's anything else I'll need to update you about. Over the next few weeks I'll probably be going back and reminding myself of the steps I took in this journey. If you want to know where things stand, feel free to reach out and ask, and as always if you find yourself asking "How can I help," the GoFundMe started by Adam is still up and running. I couldn't have made it through this year without all of your love, support, and help. Thank you.
One year down, hopefully many more to go.
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