One Year Later

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. 

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.  

The Finish Line

Here we are.

So, a few things to start with before we go into great detail here.  I'm going to start with the top line good news and not build up to it, and that is...I'M OFFICIALLY IN REMISSION!  I posted this good news on Facebook but I think it's worth going on ahead and saying this from the jump.  After nearly a year of dealing with all of this, the cancer is officially gone.  

Also, from the start, I'll go ahead and answer the "What can I do to help" question.  As usual, the easiest way is to click the GoFundMe that the absolutely wonderful Adam Pohl set up without me asking.  It's still up and running, and I want to make sure to say "Thank You" to everyone who's already clicked on the link.  With the extra prescriptions, parking at the hospital, and having to order in more due to limitations, as well as Kathleen having to take off more time so she could be with me during recovery, it's already been a huge help.  Again, easiest way to help if you so desire. 

With all that said, let's pick up where we left off. 

When last we left our intrepid hero, I was struggling through the last few days of a carb-free existence and getting ready to have one week of ALL THE CARBS to get my weight back up before surgery.  Well, Loretta's was just as good as I had hoped it would be, and I even enjoyed the fact that they had this Shiner seasonal on tap to really hop back on the carb train.  It all tasted wonderful, even if my body wasn't ready to down the entire chicken and waffles due to three weeks of no carbs. 

The rest of the week marched along to the inevitable surgery.  Along the way, the Hurricanes' season ended which was disappointing, but at least it was one less thing I'd have to follow along with during the surgery process.  I worked my last day at the office on Friday, May 17th, and slipped in on Sunday to grab my computer and phone setup so that I could work from home on Monday the 20th.  Why did I work from home my last day before surgery?  

Well, it turns out that when they plan to take out your large intestine, they want that organ empty for some reason.  Remember when I described the process for getting a colonoscopy?  Turns out it's the exact same thing to prep yourself for this surgery.  Thus, at Noon Monday, I was officially in surgery mode.  How did we treat my colon prior to its removal?  Well, on Sunday night we went out to Cheesecake Factory for me to enjoy one last Chicken Romano and Ghirardelli Cherry Cheesecake.  The latter became my breakfast for the next morning because...it was the last real food I could have before surgery so what do I care if I'm having cheesecake for breakfast?  

Luckily my surgery wasn't scheduled until 10:30 on Tuesday so it meant I got to get up at a reasonable time.  We checked into the main building at Beth Israel, and were eventually led up to the surgical floor.  Everyone's surgery process may be different, mine basically had me change into the gown, get multiple things poked into me so that drugs could be loaded into my body, and sign multiple forms consenting to actually having the procedure done.  I can't tell you how many people I actually met.  Meanwhile, Kathleen got to come in and wait with me, and she was quickly joined by Alex who graciously gave up a day of work so that Kathleen wouldn't have to be alone.  Then the time came, and I was wheeled into the room.  I actually remember being wheeled in, seeing it crowded with a lot of equipment and people, and then having the mask put over my face. 

The next thing I know I'm waking up in recovery.  Didn't feel a thing, don't remember randomly waking up with equipment in my system.  One moment I was awake with a large intestine and rectum, next moment I'm awake with both of those gone, a bag on my belly, a drain on my side, and an incision in both my belly button and my rear.  Why the rear?  Well, when you remove the rectum, you can't have what's left just flapping around, so they go in and sew that up.  

When I awoke, I was told the surgery went longer than expected.  I had been told it would be in the 4-5 hour range and it was closer to 6.  I was still out of it to an extent, so it didn't register to me how worried Kathleen had to have been as things dragged on.  It turns out she actually had them reach out to the room to make sure everything was still OK, meanwhile I'm just enjoying the drugs and barely staying awake.  

It didn't take too long for me to be taken to my room, and the good news is that BI has a section for folks who have digestive system surgeries.  It meant every nurse in that wing and every patient was dealing with a similar issue of some sort, and it was nice not to be dealing with people dealing with a myriad of things.  I was paired with someone who was also had colorectal cancer, but had chosen for the reconnection option and was recovering from that surgery after having a bag for a year.  Wonderful guy, a former cop who explained that he waited so long because he actually got used to life with the bag, but ultimately couldn't deal with all the small hernias that popped up. 

Wednesday was my worst day at the hospital.  I spent most of the day in a daze, sleeping during a good portion of it, and appearing to be very weak according to everyone who came by.  It was so bad the stoma nurse even said she would prefer to wait a day before we start going over the process of maintaining the bag.  Kathleen would later say that one day was when she was actually worried about me, and it was at the point where they had to give me a unit of blood that night to build me back up.  What's funny is that I wasn't necessarily in a lot of pain or felt sick, I was just very weak and just...slept...a  lot.  

Part of the reason for that sleeping was perhaps the worst thing about being in the hospital-time is just a concept there.  You have multiple people coming in during the night to check on you, your pain, and your vitals to make sure you're doing well.  Then around 7 AM is when the surgeons and residents come in to talk to you about your progress and what's going to happen next.  It's tough to have a regular sleeping schedule with all that, and very quickly your body becomes attuned to the noise of someone approaching so that you can get things over as quickly as possible.  I also was becoming aware of the fact that I had an incision on my rear and had to position myself to where I wasn't directly laying on it.  

On Thursday I felt better when I woke up and ate a meal for the first time, really, since Monday.  That meal was only toast and a bowl of Rice Krispys, but it was food and it's what I felt like.  I also dealt with the stoma nurse and started handling my bag for myself for the first time.  A little later in the day, I got off the bed and took a walk around the floor to start getting my energy up.  My roommate also left, and, aside from a two hour period on Friday night, my double room turned into a single for the rest of my stay.  

I stayed in the hospital until Sunday the 26th.  Each day had me adding just a little more food, taking away a little more of my attachments, and even saw Bobby and Alex come by and visit me in my disheveled state for a couple of hours.  On Sunday, I was discharged and we Ubered home with instructions to measure and record my fluid input and output to make sure I didn't get dehydrated, which turns out is the biggest danger of new stoma patients.  My goal was to make sure my intake of fluid was always higher than my output, and also to let them know if I every had a day where I either emptied next to nothing out of my bag or I had to empty it several times. 

Since then, it's just been a steady progression of sleeping, getting used to the bag in day to day life, and getting ready to renter society.  I was under strict orders to not lift objects heavier than a gallon of milk, and the incision made sitting for any length of time difficult.  So, for the first three weeks post surgery we ordered groceries as needed, and I lived off a diet that was heavy on bananas, cereal, and pasta melted with American Cheese.  Why pasta with American Cheese?  Because it's a comfort food I made for myself growing up, and it's relatively bland enough to allow my system to start processing more complex items.  

This past Wednesday, we had the appointment that would dictate the next steps; the meeting with the oncologist and surgeon.  At it, we would get the pathology report, go over how I was feeling, and talk about where we go from here.  The surgeon started by saying he was about to give me the best pathology report that he's given to a patient all year.  

Well that makes you feel good. 

The pathology of the rectum and large intestine was first.  The original tumor had indeed shrunk, there was a spot on the colon that he was a little concerned about, but it turned out to be nothing.  In other words, the cancer hadn't spread further and had, in fact, been tamed.  They then talked about the lymph nodes that had been infected and caused the Stage III diagnosis.  Those nodes now showed zero cancer cells, and what had been in them had been replaced with scar tissue.  

In essence, all the cancer had been taken out of my body.  You add that with the scans I've had pre-surgery there is zero evidence of it spreading anywhere else, which means I can call myself cancer-free-or perhaps the better way is to say I'm in remission.  

This time a year ago I was aware something was up due to difficulty sitting.  The process would begin a month later with the making of my doctor's appointment, then the colonoscopy a few weeks later, and off from there.  After a full year of dealing with this tumor in my ass...the cancer part is done.  Officially done.  Gone.  Good-bye.  

I'm not 100% yet, though.  The biggest thing is that I had taken it maybe a little too easy during the three weeks I was recovering, and the oncologist made it clear my next step was to make sure to get out and do some decent activity each day to get my body past the fatigue that had built up.  Since then I've been doing that, be it a walk around the reservoir, a drive to the grocery store and walking around there, or today where I went and got my hair cut, which involved a 30 minute drive to the place where I go. All of this is building the energy back up to where I can start working again on June 26th, where I can make sure I can focus for 8 hours a day to do my job. It's also making sure I can hold up during a trip to see a good friend get married this weekend.  

Work and my doctors have been amazing at working together to make sure I have the time to fully recover and get over my fatigue, as well as take the trip to the wedding which I need psychologically. I have no doubt that when I log back into the computer on 6/26 I'll be ready to attack the job the same way I did before, even if I have about 1,000 e-mails I'll have to sort through. 

Living with the bag has also been an adjustment.  So far I've had one incident where I didn't install it correctly and woke with it leaking on my belly, one incident where I tried to vent out gas while laying down and some of the...output came out, and one incident just today where the closed in caught while I was changing clothes, spilling the contents on the clothes I was wearing at the time.  I'm also trying to figure out attachments to the bag that can hold it closer to the body and make it more difficult for you to tell I have one on.  I have one provided by the company making the bags, but trying to get it positioned right is still a challenge.  Hopefully, over time, these little things will be absorbed into daily life. 

I'm also still dealing with the side effects of the treatments and surgery.  I've had a numbness in my hands and feet since March that still hasn't gone away, despite my oncologist saying it eventually will.  I may actually get acupuncture to try to stimulate the nerves and get that numbness away.  You also can't get chemotherapy, radiation, and a surgery in that area of your body and them be able to completely avoid the other items in that area.  Hopefully as time goes on the effects in that area will go away.

It's still been a good trade off, though.  As part of the discussion on Wednesday, both the oncologist and surgeon told me that whatever I had chosen they would support, but in retrospect they were happy I went with the full removal.  The surgeon stated my belly region was a little more complicated than expected and the less they had to go in the better, and the oncologist told me that, frankly, had I gone with reconnection I would be dealing with cancer again.  It turns out he's dealing with a study in Lynch Syndrome patients, and while it's colon cancer and not rectal cancer, he's spent a lot of time dealing with this specific genetic issue.  He felt that it really wasn't a question of if but when.  Now, is this something they are saying just to make me feel better about my decision?  Maybe, but I feel like they wouldn't have gone into that much detail unless they were sure it was the right call.

Throughout all of this Kathleen has been a rock and , doing chores she's not used to doing, doing the heavy lifting so that I don't strain myself, and injecting me with the anti-clotting medicine that I have to take for a month to help reduce any chances of a complication.  She's also been there to encourage me, and gave me a shoulder to cry on with all the difficulties as well as the happy news. She was also instrumental in orchestrating both hospital and apartment visits by folks to break up my routine and improve my mood.  I couldn't have done this without her. 

So that is that.  From here, I have an appointment to get my port removed, and then follow up in three months to see how things are going.  For the next five years, I'll be getting a yearly MRI and CAT scan to make sure nothing is popping up, but beyond that, the fight is done.  Really, I view this as crossing the finish line and just getting that bottle of water at the end to make sure you recover from the long run.  I'll be keeping an eye on my weight, as I'm down 25 pounds since that first consult in April where the options were laid out, and down about 15 since the surgery.  My appetite is basically back to normal, and it's going to be heavier on carbs at least for a little bit to help the output in the bag.  Soon I'll be back to work, and I'll have a routine that'll involve this little attachment on my belly.  

To all of you who had me in your thoughts, helped out in any way, had been concerned, shared your own experiences with me, shared a tweet, or really just passed along a positive vibe, I thank you. I'm lucky to have had all of you to help both myself and Kathleen out during all this.  On top of that, the cancer fight may be done, but life still moves forward changed forever.  I couldn't have gotten there without you. 

In short, together, we were able to Kick Ass Cancer's Ass, and my ass is glorious again. Thank you. 

The Decision Has Been Made

Yup, you read the title right.  With about a week to go before my surgery on May 21st, I've decided what my final wall in this cancer fight will look like.  

In case you missed it, or if you wanted a reminder, after my appointment with the colorectal surgeon two plus weeks ago, I was given three options for the surgery: cut out the tumor, remove the colon and live with a permanent ostomy bag, and remove the colon and live with a J-Pouch.  

I didn't take the decision lightly, as one shouldn't.  The complicating factor in the decision was the diagnosis of Lynch Syndrome, a genetic disorder that tends to lead to a hight rate of colorectal cancers.  It's the reason I got the disease so (relatively) young, and the stinger is that just because this cancer was taken away, doesn't really reduce the chance that another tumor would come back in the colorectal region.  

So, I weighed the options and the drawbacks of all three options, talked with a few people who had the different surgeries done to get their experiences, and weighed, basically, which inconvenience I was willing to live with for the rest of my life.  It wasn't easy by any means.

I'm going to have my colon removed and live with a permanent ostomy. 

Feels good to say that out in the open. 

It came down to this: I didn't want to have the shadow of a return of cancer be any bigger than it had to.  I'm still at risk, as is everyone, and the Lynch Syndrome does lends itself to a greater risk of cancer in other organs.  That risk is minimal, though, when compared to the colorectal risk.  While the doctors wouldn't guarantee that it would return in the colon, the chances it would are higher than the bet is worth.  That, combined with the fact that every year I'd have to go through the process of having a colonoscopy done, all for the idea that I'd still have less control over my bowels just didn't add up for me. 

So why not the J-Pouch?  I do admit that option was intriguing.  I'd essentially get the safety of no colorectal cancer risk combined with not having to deal with having an ostomy bag.  The problem there, for me, was the frequency with which I'd have to expect to find a restroom.  The lack of a controlling organ for things would give me very little time to find said facility, and I was going to be guaranteed to make multiple trips a day.  

With the ostomy bag, once I get used to it, I'll be able to plan things a lot more, and since it'll be permanent instead of temporary the surgeon can do the operation such that it's "better" for it than the temporary one he'd have to do while I was recovering.  I'll also not have to worry about all of the prep and work that goes into a colonoscopy every...single...year.  It keeps me from having to deal with a second surgery, as well, be it to reconnect things or remove the colon later.  

So that's that.  The decision is made.  On Tuesday, I have an appointment with the nurse who will teach me about the ostomy, as well as all the pre-admission testing prior to the surgery.  I also have my pre-surgery instructions, which is going to send my colon out with a bang.  Basically, it's the colonoscopy prep, right down to the clear fluids.  Simply thinking of having to do that again almost seems to help confirm that I'm making the proper decision.  The good news is that after that appointment on Tuesday, I'm back on carbs again to get my weight up.  How are we celebrating?

Chicken and Waffles at Loretta's Last Call.  Hey, if you can carb, why not go all out?

I will say, I do understand the craze to get carbs out of one's life.  Over the past two and a half weeks, I'm down about 11 pounds and have discovered a few different things that I can incorporate into daily life once things are back...closer to normal.  The big thing is coffee.  I had relished the fact that I could drink sodas again once the metallic taste and cold neuropathy was gone, meaning I had dropped the coffee "habit" I had picked up during chemo.  These past couple of weeks I've gone back to a morning cup with half and half to completely eliminate sugar again.  I will say, I'm starting to understand the habit from folks.  Once I can put a little more sugar in the stuff, I might be incorporating more of it in my life instead of sodas, which is a good thing. I've also found that the cauliflower rice stir fry from Trader Joe's is pretty good, and that roasted brussel sprouts are pretty good.  

Will I stick to the carb free life once I'm out of surgery and able to eat food?  Nah.  Love them too much.  But, maybe I'll be a little more aware of the amount I'm putting in.  

Anyway, after the surgery I'll spend a few days in the hospital and then come on home to get used to life with the bag.  After a period of recovery, likely as short as ten days, I'll be able to go back to work since I have the ability to work from home.  Ideally, by the time June is over I'll be back to a daily routine of living life cancer-free.  

Now the somewhat awkward part of the blog: asking for help. 

The good news about where I work is that they take care of you, paycheck wise, during this thanks to the generous time off policy and short-term disability insurance.  The bad news is that being laid up with the surgery comes with a few drawbacks that'll tap resources: that I'm the only one who can legally drive out of the two of us, and that Kathleen also has to take time off work in order to make sure I'm taken care of.  If you're asking yourself "how can I help?" well, the GoFundMe that the absolutely wonderful Adam Pohl set up is still going.  The help from when this first was established was amazing in allowing Kathleen to take more time off to help me recover, as well as take care of the expensive that inevitably pop up during this.  It helped take away a lot of worries, and so if you live a great distance away and want to help, this is an easy way to do so. 

What unexpected expenses?  Laundry, for one, and ordering groceries instead of going out to buy them ourselves.  It may also be a while before we can cook and eat the same meal, meaning that grocery bill will be higher than expected.  That's just a couple of things, and I'm sure there are dozens that I can't think of right now.  So, if you want to help, that, frankly, is going to be the easiest and best way.  

OK, enough begging.  Wish me luck for my surgery, and I'll make sure I have access to the laptop during the hospital stay to keep you updated.  In the meantime, Go Canes!  

Unexpected Inconveniences On the Way to the Third Wall

Wow, it's really been since the middle of March?  Where has the time gone?

When last we spoke, I had just finished radiation and I was about to go and celebrate being done with the treatments by going to Las Vegas and toast the impending marriage of a good man.  I also knew some scans were coming up, and a discussion was going to be had about the surgery.

So, I'll save time on one place: Vegas.  The trip was everything I could have asked for and more.  I had a blast, it was great seeing old friends and making new ones, and the way the guys bent over backwards to help me out in unexpected ways won't be forgotten.  I got to experience March Madness at a sports book, treat myself to a massage and relaxing time at Qua spa, sit down at the poker table, have some great steak, and spend a ton of time with people.  The topic of my cancer came up a couple of times, but it was totally my choice to bring it up, and it was empowering to talk about it in the open.  I don't have enough thanks in the world for everyone during that trip. As it is, I still have pieces of the trip with me thanks to a couple of great gifts and a $20 bet on the Carolina Hurricanes to take the Stanley Cup.  I got some good odds.

@SportsChannel8 @Section_328 When in Vegas, right? Fun way to spend $20 pic.twitter.com/y4EjGvVLLF

— Al Hood (@albhood) March 25, 2019

25-1 when Tampa was still in it.  Now?  They probably still won't win it, but damn if it isn't looking like a good value bet. 

Anyway, Vegas was great.  A couple of weeks after I got back, it was time to go through the scan process.  Let me tell you, it was a lot of fun using that enema again to make sure they could see everything.  It was also great getting shot with a ton of glucose to slow the bowels down, and it was really fun drinking a quarter of disgusting ionized water.  Needless to say, I took that full day off because my body was wrecked once it was done. 

The plan was to go over the scans during the sit down with the team, but because I'm registered on a patient site where all labs and tests done are visible, I was able to see the results prior to sitting down.  In summary: again nothing has spread beyond the original tumor, and the tumor itself has shrunk to the point where it's "no more visualized" on the scan.  It's not gone, mind you.  But going into last Wednesday's meeting, I knew that everything we had done had worked about as well as can be hoped. 

Thus, I was actually hopeful going into Wednesday.  I knew the news would be good and thus we'd talk about what to expect with the surgery, set a date, and that would be that. 

Yeah, it was a little more complicated than that. 

It started with me being introduced to the head of colorectal surgery, a different man than who I originally met.  Turns out the surgeon I thought would be doing the procedure is leaving the hospital and thus, I get his boss.  Cool.  The next step, though, was to talk about my options for the surgery.

Wait...options? 

The visit turned into a discussion of my genetics.  What I knew was that I had had something show up in my genetic testing that leant itself to me getting this form of cancer.  It never really changed my treatment so I didn't give Lynch Syndrome much of a thought.  This surgeon, however, brought up that because of this Syndrome, the "simple" surgery that we had been aiming for, where they cut out the tumor, sew the ends of the rectum together and eventually full function is restored may not be the best option for me.  

Basically, because of the Lynch Syndrome, there is a chance that a new tumor could come back in the colon, and better odds than someone without Lynch.  Thus, if I choose the "preserve the rectum" option, I'm taking a bet that there won't be any new cancer in that area and somewhere down the line I have to go through all of this again.  Of course, if another tumor comes, there's no guarantee my body will respond as well to the treatments as it did this time, and I would be looking at a no choice surgery to remove my colon.   

So, I have three options (one had two options in it but we won't talk about that because we all agreed that was the worst option and the surgeon strongly recommended against it). 

1) Preservation of the rectum.  The positives of this move is that it makes my body the most "normal."  I'd have the temporary ostomy bag, and then after two months another procedure to reconnect the colon and the rectum.  Once that's done, I basically live close to a normal life, with maybe a few extra visits to the bathroom.  

The negatives are that I'd be having two surgeries, if nothing else it'd be an inconvenience.  I'd also be starting at having a colonoscopy every year for the rest of my life. No ifs ands or buts about that, because of the Lynch Syndrome we'd have to be vigilant about catching any growth before it could turn into anything.  There's also the small chance that the repair could leak or fail, which wouldn't exactly be a good thing for waste to get loose in your system.  Also, there's an unpredictable amount of trips to the bathroom that may happen. 

2) The full removal of the colon part 1.  The positives of this one is that I would only be looking at one surgery, albeit a much longer one.  As I wouldn't have a colon, I'd have a zero chance of cancer in said colon ever happening again.  That also means no colonoscopies, and no unpredictability about going to the bathroom.  In fact, I basically could plan those trips.  

The reason I can plan those trips?  That's the negative, instead of a temporary ostomy bag, it would be permanent.  I'd live my life with that bag on my side, and the extra inconvenience that it brings to me.   

3) The full removal of the colon with the insertion of a J-Pouch.  This option is trying to attempt to get the best of both worlds.  Again, the colon is removed, but in it's place is a plastic pouch.  I'd still have a temporary ostomy bag while it settles, but then this pouch would be attached to the small intestine and normal function resumes.  The positives of this one are basically the same as the first option.  I'd live life without the bag, but the bonus here is that I'd remove the chance of another tumor in that are of the body because, again, the colon is gone.  No colonoscopies, and one less thing to worry about. 

The negatives are a mix of the two as well.  First off, again, there'd be two surgeries because you have to place the pouch in, then you have to connect it once it's set.  There's a foreign object in your body, so there's always a chance of infection.  There's also the bathroom trips.  Simply put, I can expect 5-7 trips to the bathroom a day with this thing because the filtering mechanism is gone.  That could create a major inconvenience in life if I need to go and there's no where convenient to go.  This is also a concern of the first option, but it's for sure an issue here.

As you can see, it's a lot to take in.  I had been proceeding under the assumption that either we could get the tumor to shrink enough to preserve rectal function, or that it would fail and we'd have to go with the full removal.  Basically, I wouldn't have to make a choice.  This whole time, the thing that's been easy is that I've been told what to do.  Technically I had a choice, could have gotten a second opinion, but really I just did what I was told.  Now?  I, and really I alone, can choose where to go.

It's been stressed to me by both the surgeon and oncologist there isn't a "wrong" choice here.  If there were a right or wrong choice, they'd tell me I'd have to do one or the other.  In a weird way, because everything worked as well as it do, I face this decision.

I'm not going to lie, it's frustrating to have this laid on me at this point without full prep.  Yes, I knew a full removal was a possibility, but it was ultimately presented at the time as something that would be an either/or situation. Instead I have to tell the doctors what my preference is.

And the fun wasn't done yet.

It turns out for the surgery prep, the doctor wanted me to lose weight in a hurry to help the process, and then the week before start to gain it back.  How can I lose weight in a hurry?

Good-bye Carbs.

That's right, no bread, no pasta, no soda.  He essentially wanted me to do a Keto thing for three weeks to let a decent amount melt away, and then with a week to go I can reintroduce them back so that it can come back and be in recovery before we do the surgery.

I'm not going to lie, this maybe hit me harder than the choices, and put all together, it's been overwhelming.  I had been able to enjoy sodas again since the cold sensitivity left, and I've always been about those carbs.  Generally, when someone goes on one of these plans they do it willingly, and plan on a date to start.  I had to go into this without any planning, and immediately change my diet.  Do you know exactly how many things have carbs and sugars in them?  This hit me like a ton of bricks yesterday when I went to the store after doing laundry to try and find a quick snack and just...couldn't....find...anything.  I've had to give up sugar in the sweet tea, and my meat and cheese consumption has really jumped up.

I mean, I had to watch Avengers:Endgame without any popcorn at all.  Going to a movie and not eating popcorn is torture.  Absolute torture.  Luckily the movie kicked a ton of ass so it didn't matter, but we plan on seeing it again next weekend and I'll have to figure out what I can snack on.

The good news is that a date is set: May 21st. So, for two and a half more weeks I'll try to avoid all the grain and sugar carbs (fiber carbs are OK because of their function), and try to not get sick of meat and cheese.  I'll also keep drinking the lemon-infused unsweet tea wishing that it had at least a little sugar in it, as well as avoid ice cream.

Also during that time I'll be making my decision and letting the docs know.  I have until a couple of days before the surgery, but I don't want this to hang in the air.  Anyone who has an opinion can, of course, share it with me.  I think I know where I'm leaning but I want to let it marinate just a little before I lock it in.

In the meantime I'll do what I can to not let this all get to me.  I honestly can say this is the most down I've felt because of the forced diet and weight of the decision.  It's frustrating to get so close to the finish line and have a ton of stuff shoved on you.  It sucks, as does having cancer in the first place.  At least the end is near, whatever that end is. 

The Second Wall Has Been Climbed

So, apologies for not updating since the last post.  Radiation treatment was a different animal than chemo, in that instead of it being an interruption of my routine it became part of my routine.  It's a lot easier to update things after each one of those battles with the IV were done, less so when you just get used to doing the same thing every day.

It's almost a shame that it's over, really.  I was starting to enjoy going into a room, stripping naked from the waste down, laying on a table like a beached whale, and having radiation shot in my ass every weekday while trying not to flash the wonderful nurses who had to deal with me each day.  Really, it's as fun as it sounded.

That said, I had been mostly low-key about this particular milestone.  Because it was something I just did everyday, it really didn't sink in that I was approaching the end.  That is, until I pulled into the parking lot at Beth Israel.  As I got out of the car and started making the all to familiar walk, of all things, Hamilton started rolling around in my head.  Specifically:

🎶One last tiiiime... pic.twitter.com/kLMimWLK7f

— Al Hood (@albhood) March 14, 2019

So, as I entered Radiation Oncology for One Last Time and walked into the changing room, I started tearing up.  That moment is when it hit me that I was about to be finished with chemotherapy and radiation.  I mean, this is a big effing deal, a lot of people don't make it through this process as well as I did, and here I was about to get a last treatment and head to work like nothing happened.

This particular machine that was giving me the treatment had a rhythm that I had gotten used to.  First, the X-Ray camera whirls out to take a snapshot of my pelvis, specifically to make sure I had a full bladder (more on that in a minute), there's a period where nothing happens while they review and confirm everything looks good to go.  Then, the arm that has the X-Ray whirs back into place, and there is a loud "CLUNK" as, presumably, the radiation kicks on.  The machine then spins in a small circle while you hear the buzz of the radiation being buzzed inside you.  It spins one way, then returns the way it went, comes to a stop, and there's a second loud "CLUNK" as the machine shuts off.  I stay still, but at that moment I know the treatment is done.

On Thursday, as soon as that second clunk hit, I pounded the table and waited for the nurses to come in and reset the table so I could get down.  They congratulated me, and we chatted for a bit, mostly me thanking them for everything.  As I headed to the chair where I had laid down the second robe, I found this on top of it:

No, you’re sitting in the changing room crying. #MAAGA #KACA

Two walls down. One to to go. pic.twitter.com/1Si2ejYrI5

— Al Hood (@albhood) March 14, 2019

I went back to the changing room and just collapsed on the bench before changing.  Everything washed over me.  I did it.  I was done  No more radiation.  No more drinking five glasses of fluid in the morning to have a painfully full bladder.  No more having to lay half-naked on a table.  No more having to take chemo pills twice a day.  All of it.  Done.  

Overall, I came out of radiation pretty well.  As I type this, both of my hands have gotten a little numb at the tips as have my feet-I'm not sure if this is due to the chemo pills, radiation, both, or neither, but my oncologist wasn't overly concerned when I talked to him about it the Friday before the last treatment.  The biggest side effect, honestly, has been what you'd expect when a treatment is specifically aim in that part of your body: Diarrhea.  It hasn't been so bad to where I need to take an Imodium every day, but it absolutely has made it to where life is not as..comfortable...as it could be. Frankly, it also made things worse in the mornings because I still had to make sure I had that full bladder.  That means by the end I was drinking even more water because some of what I was consuming wasn't going to my bladder.  

The other thing I had to battle was fatigue.  I'd say about 90% of the time my energy level was either at normal or just below normal.  But a couple of times I would just get completely zapped.  Two times I went to work and ended up leaving early just so that I could do nothing but sleep the afternoon away, and this past week it was so bad I ended up taking the next day off as well.  The biggest thing was making sure I listened to my body when it got that way, and after the time off I was able to finish the week like nothing happened.  

"Al," you may ask, "I didn't see anything about you actually celebrating that you are done with radiation.  This is a big deal, what are you going to do?"  Well, I'm glad you asked. 

It turns out that since around the end of chemotherapy, I've been planning on a trip that hits on Wednesday this week.  A good friend from college is getting married in June, and he usually hosts all his friends at his house during the first weekend of the NCAA Tournament.  This year, he decided to combine this celebration and his bachelor's party all in one, and do it in the best place to watch the first weekend of the NCAA Tournament: Las Vegas. 

I had been on pins and needles throughout this whole process hoping that there wouldn't be any days where radiation was pulled because any delays put it closer to when I am actually flying out.  Thanks to everything going smooth, after work on Wednesday I'll be heading straight to Logan Airport and taking the 9 PM flight JetBlue Direct to Las Vegas.  I had enough points to get a free hotel room at a Candlewood Suites just off the Strip for a couple of nights, and then as a late Christmas present to myself, I have a room reserved at Caesar's Palace in the same tower that the party suite is in.  

The great thing about this set up is that the spirit of the party, come and go as you please, no real schedule, the point is to hang out and watch some basketball, will still be in place.  So, I'll absolutely spend some time with some old college friends, and also spend some time resting, and likely spending some time here and there at a poker table.  There will be some alcohol involved, but as I haven't really had a drink since Christmas, don't worry...I won't go crazy.  Besides, someone has to remember all the fun.

This good friend, Tony, managed to work with my wife and another good friend, Neil, to pull off one hell of a surprise, by the way.  

So, I mentioned that at Christmas, Kathleen had gotten me tickets for the UNC-BC game.  What she didn't tell me was the those tickets were along with Tony (who lives in NC) and Neil (who lives in Arkansas), and those two guys were going to fly up and attend the game with me.  For three months-THREE MONTHS-they managed to keep this quiet from me.  Despite a snow storm coming the day before the game, everything fell into place to where they had me completed fooled, which led to this (language warning cause I was that surprised):

Flew into Boston last night to surprise my friend @albhood and go to the @UNC_Basketball game last night. Here's a clip of the video of us surprising him at his house. pic.twitter.com/jHI7Krxgmh

— Neil S. Oatsvall (@DctrNO) March 6, 2019

It was amazing.  We caught up, ate pizza at Pino's, watch a great win at BC, and I got to act like I was back in the band with a few folks who knew how...excited...I get during games.  To add to the fun, We were even joined by another friend from my college days in Drew Cline, who managed to snag seats right in front of us.  Between the surprise and just the time hanging out, it was easily the best night I've had since this whole process started. 

That's really been the amazing part about this: all of you.  My friends and family who care, people who want to help, and just all of the good vibes that keep being sent my way.  It's kept my spirits high and has allowed me to get through this whole thing well.  It's amazing the capacity humans have to help each other, even while doing little things.  So, again, thank you one and all for what you've done as I continue this journey. 

And this journey still continues.  Next up, Surgery.  

Here's what'll happen: on April 11th I have both the CT and MRI scans done both to confirm that again there's been no spreading of the cancer, and to see how much the tumor has shrunk.  Then about two weeks later I meet up with the entire team to go over where things stand, review the scans, and set the date for the operation, which should be about a month later (later May).  That operation will both cut all the cancer cells out of the rectum, and disconnect the rectum from the colon, meaning when I wake up I'll have a colostomy bag coming out of my stomach.  I'll be in the hospital for as long as it takes for my digestive system to kick back into gear, and the colostomy bag will be on me for at least a month.  

The hope is that the tumor has shrunk enough to where the rectum can be saved and about a month after the initial surgery, it can be reconnected.  So, in short, life is going to suck for periods of time around late May to late June/early July.  

Once I know more, I'll let you know.  For the next couple of months, however, it's about recovering from the treatment, and enjoying normal life...as much as one can enjoy normal life...as well as seeing some great friends and soaking in all the fun that is Las Vegas and the NCAA Tournament.

Speaking of the Tournament...

For the past few years, I've run a bracket pool on Yahoo.  It's patterned after THE POOL! that I took part in while in college.  The point of that pool wasn't for experts to get together and brag about their knowledge, but all people to get together, submit however many brackets they were willing to pay for, and then get really long e-mail updates from the man who ran it, as well as others who participated.  It became very interactive, and the folks involved would create pools chosen by animals, ones where all sorts of decision making devices were used, and so on.  I revived this tradition using more modern technology than faxes and what not, and created a Facebook group where all the updates occurred. 

So, if you are interested, here's the link: 

If you join and haven't already, seek out The Pool!2019 Facebook Group so that you can trash talk, see updates, and so forth.  This year, another wonderful friend Emily Scott is going to assist me in running this so I can fully enjoy Vegas, and allow my mind to rest as needed.  You can create up to five brackets, choosing however you like.  It's also completely free.  There aren't any prizes because it's completely free, but it is completely free.  

The password is "bracket"

So, as always, Thank you.  Please don't hesitate to reach out and ask if you have any questions or are concerned because you haven't heard from me in a bit.  I'll continue to be as open a book as you can handle about this. 

And join The Pool! for some free fun.  Wish me luck in Vegas!

New Process, New Routine

Time passes way too quickly.  It's remarkable to think it's been almost a month since I updated you all on how things are going.  Part of that comes from the fact that there was the two + week recovery between the end of chemo and the beginning of radiation, so my body was just trying to heal.  The other part is once the new routine began, I wanted to make sure I was set in my routine before I gave an update.

It's fair to say the last chemo treatment was the toughest.  It absolutely left its mark in several ways: my feet decided to alternate between being hurt for one.  There were a few days where my ankle hurt and I used my other foot more to compensate, then the ball of that foot would get overly sore right as the ankle recovered.  I had been dealing with that on and off since the end of chemo, but the oncologists weren't really worried, just saying that during the process my body's healing ability wasn't going to be what it was.  Still, it lingered, and that became a concern this week.  I'll get to that in a minute.

Otherwise, there are some lingering effects that are more annoying than anything: the taste buds are still zapped and my hair is still pretty thin.  There are a couple of other things, but as this is a public blog and I already flirt with TMI on here, I'll leave that alone.

The taste bud thing is the most annoying, really.  The best way to describe it is that a metallic taste is hanging around my body, and when I try to eat or drink something, the flavor is affected.  Really, it's something I've been dealing with since the beginning, but during the majority of chemo the effect would go away, and I would be able to eat normally.  Now it's really just a matter of trying to be patient and work around the odd tastes.  I've been told this isn't permanent, but since I'm taking a small form of chemo with my radiation I suspect it's going to hang around for a while.

The hair thing is annoying, but at least I still have some to work with. It's almost like an accelerated version of what happens as you get older, hair just comes out and you have less cover your shiny noggin.  That one was a result of the Ironotecan, which will no longer be part of my treatment so the hope is that eventually my scalp realizes this and starts growing back what it let go.  So far, that hasn't happened, but from what I understand that process can take a little while.  It's allowed me to stretch out my haircuts at least, so that's been a positive.

I would say the other thing that happened since you last heard from me is that Kat and I decided to have a celebratory night out to mark the official end of chemo and the beginning of radiation.  We hoped that two+ weeks at least would be enough to get myself as close to normal as possible so that we could enjoy a meal at perhaps our favorite chain: Texas Roadhouse.  Back around Christmas, I bought a gift card for my Sister-in-Law down in Texas.  As a reward for buying a gift card, the restaurant gave me a gift card back that would cover a good chunk of a meal, and we finally got a chance to treat ourselves to one with the benefit of staying in a hotel room instead of our apartment.  It's fun to get away, even for a night, to disrupt the routine and try to enjoy life a little more.  It was a great way to go into the next phase.

Monday saw another appointment with the oncologist to confirm everything was good, and then the first radiation treatment.  Things were running a little behind, but luckily I was able to get the first treatment in, and get an 8:30 appointment set for every weekday from now until March 14th, with the exception of President's Day because here in the Northeast, they recognize that day and a lot of people get it off.  I won't, of course, but other people do.  Monday was the first day that my new daily routine started...and it's a lot of fun.

It starts with the alarm and doing what most people do after a full night's sleep, emptying your bladder because nature does its thing.  The difference here is that I immediately drink two glasses of water after finishing.  Why? Well, where they are actually aiming the radiation is also in the area where the bladder could get in the way and accidentally get shot unless it's full.  When it's full, they can see it and it also kind of pushes itself out of the way.  Thus, when most people are at their emptiest I have to refill.

So, I take my shower after those two glasses, clean up, get dressed, and get breakfast.  I've never been much of a breakfast eater, but as part of this treatment I'm taking chemotherapy pills.  A much smaller does of what I was taking by IV, but it's still five pills that have to be ingested twice a day, and the recommendation is that it's taken after a meal with a full glass of water.  So, I have a modest breakfast to get food in my system, a can of coke so that I can have a pleasant demeanor, and then I down another glass of water along with the five chemo pills.  Then, for good measure, I drink another glass of water just to make absolutely sure I have a full bladder.  The last glass is taken about 45 minutes before my appointment, and I've found this works.

I then drive over to Beth Israel.  The hospital has a special lot for everyone getting radiation treatments, with a temporary permit it allows you to park at the hospital for free which is a Godsend.  during chemo, I was paying $7 each day I went.  Doing that once every two weeks isn't bad, but doing that five days a week?  Yeah, that'd add up.  The only odd thing is that there's no direct entrance to the radiation department, so I have to walk up to the main entrance and, essentially, back from where I came to get to the elevator to go down one floor.  At least I'm getting steps in, I guess.

Once at the department, I say hi to the absolutely wonderful people at the entrance desk, who seem to make it a point to smile at you and say hello when you come in.  I then take a card that's been assigned to me and scan it at the desk, which lets them know I've arrived.  I then immediately head to the changing rooms.

Here's where things get fun.

Now, where my cancer is, one would assume that they would want you to wear the gown open in the back, so they would have easy access.  Nope.  For reasons that haven't...fully...been explained to me, because I'm laying down on my stomach for the treatment they want the first gown I put on to be open in the front.  Then I put on a second gown in reverse so that, you know, I don't flash everyone in the waiting room.

Not too long after I sit down they call me to the back where the machines are.  I check in with my techs and show them my card, and they confirm who I am with a photo that was taken back when this process started.  I then walk into the room and put down all my personal effects, take off my glasses, take off the second gown, and desperately clinch the front of the first gown for as long as I possibly can.

It must be a reflex at this point, or at least me trying to be polite about the fact that I would prefer to show them the lower half of my body as little as possible, because in the end the work is in vein.  That's because I have to step up to the table where I will lie down, and that process is impossible to do while holding the gown closed.

Once down on the table, I lay my head on a triangle wedge (calling a pillow is being too kind), and look to my right while the rest of my body lies flat with my stomach in this spot on the table where it's supposed to sit.  They raise my feet and put a wedge between them so I can be a little more comfortable, and then at that point I hold still.  They start lining me up with the tattoos they put on my body, which includes them yanking on the sheet that covers the table to move me up or down, or shove me over as needed.  I can't help them because I likely would move too much, plus I can't see the marks they are aiming for.  So, I just lay there like a beached whale while they get me on the exact mark they need me to.

Did I mention I'm supposed to have a full bladder during this?

Once I'm at the mark, they leave the room and the process begins.  The table slides to the machine, which is just this really big circle with a couple of arms that spins around slowly.  It buzzes once in a while which I assume is the actual radiation being shot into my rear.  That process takes maybe ten minutes, then the table slides back and the techs start removing the wedges.

Then I have to get off the table.

Just like it's difficult to keep the gown closed with one hand getting on top of the table, it's just as hard to do that getting off the table.  I quickly hop down, just as quickly grasp the gown closed, and put the second gown back on.  The techs tell me to have a good day, and I go off to change back into my regular clothes...after stopping in the restroom.

I can't imagine what this process is like for a woman having to get this for breast cancer, or a male getting treatment for testicular cancer.  I get that the techs working in these rooms have seen all parts of the body and work in medicine, and thus they are completely desensitized to it.  They are lovely people who are remarkably friendly as well as efficient.  But you're still exposing yourself to another human being, and it takes some getting used to at a minimum.  I try to keep that in mind through all of this, especially when this whole thing started with a camera going into my colon and three doctors feeling the tumor.

That's going to be my routine for the next month+.  On Fridays the Radiation Oncologist comes down and we chat about how things are going.  He'll look my skin over, checking for reactions, and making sure there aren't any adverse effects going on.  Next week I also have a meeting with the regular Oncologist mostly to do the same thing. Once I'm done at the hospital, I head to the office to get six hours of work in.  Thanks to my seniority and the lack of vacations I took leading up to this, I've got the time off built in to basically take two hours off each day for this treatment.  Luckily work is understanding, and the job I have is one that can easily accommodate a modified schedule for the time being.

The routine was a little off during this week because of my right foot.  After last Saturday's night out, I woke up on Sunday with it really sore after it being fine the night before.  I attributed this to having to stand on it at an awkward angle for 40-45 minutes, due to the wait at the restaurant.  The nurses at the hospital were worried about fluid building up or blood clots, so on Wednesday I ended up getting an ultrasound as well to make sure everything was good.  In the end, it was just bruising and it got better each day.  As I type this it's basically at 100%.

That's about the sum of things.  As radiation goes on there's a likelihood I'm going to get, for lack of a better word, sunburned in the area they are treating which could make sitting uncomfortable again, and I have to be good about taking the chemo pills after morning and evening meals.  I also can't drink while on the medicine, so no beers or bourbon to warm up during these cold New England Nights.  I'm immensely thankful for having the Uber credits from my coworkers in case I wake up one morning for treatment and the weather is doing it's New England best, and we are taking advantage of the Blue Apron now so that's at least two nights a week I don't have to worry about picking up food.  Despite the annoyances I'm reminded of just how lucky I am in so many ways, so my spirits are still good.

It hasn't all been peaches and cream, for sure.  I outlined what's been annoying about the process so far, and the team of doctors have made it clear that there is a councilor I can talk to should everything get overwhelming. So far, though, I haven't needed it. This isn't modesty, a false bravado, or me trying to just "tough" my way through it.  Things have gone so well in a lot of ways, between the good results and the lack of the worst of side effects, that it's provided a perspective that's allowed my spirits to stay up.  I'm also keenly aware of people that are dealing with far worse: cancer plus family issues, or dealing with having kids, and so on.  I'm able to get treatment, work it into my daily routine, and work like nothing is going on.  That doesn't make me special or better than others, not at all.  Each patient is a unique case with a unique treatment, and unique circumstances surrounding the treatment.

So with that, I just want to say thank you, again, for all of the support you've given so far.  You may not think it's much, but anything to help keep the spirits up has been great.

I'll update this again in a couple weeks.  I'll be well into treatment by then and we'll see if any effects start hitting.  In the meantime, if you want something more specific or have questions, don't hesitate to reach out to me.  I'm trying to let this be as open a book as possible.

The First Wall is Scaled

At 1:30 PM this past Sunday, I walked out of Beth Israel Medical Center having have a chemotherapy pump disconnected for the last time.  I hope.

Ladies and gentlemen, the main round of chemotherapy is done.  The routine of every other Friday being spent in a pink chair reclined while the drugs are being poured into my system are done.  So that's that right?

Yeah, not that easy.

The chemotherapy did its dirty work.  I don't have any clue about how big the tumor is anymore but the pain I had when this all started is completely gone, and I haven't taken any nerve medicine for about a month now.  That's the good news, but with every bit of good there's some bad.  This past round saw the neuropathy last the entire time, that's probably the biggest bullet point from this last round.  Even on the day that I was headed in for the last time, I tried holding something from the fridge and got the shock/numbing sensation to go up my fingers.  I was at least able to DRINK something cold, but the cold that's come around this time around has hit me like an electrical field.  The last few days have been fun as the cold wind has hit my face and actually caused both the nose and the ears to get zapped.

I should consider myself lucky, all of these effects are ones that hit people harder and more sudden.  I just had to put up with the worst of it at the end.  Oh, the fatigue hasn't been great, either.  The New Year's holiday spoiled me after the last treatment, as I was able to take four days after the main treatment and two days from the pump disconnect to fully recover.  This time around I tried hitting the ground again on Monday at work, but I ended up leaving early as a general air of fatigue hit me.  It's tough to explain what that does to you.  It's more than just "being tired."  It's a general air of being unfocused.  The only thing that feels really good is just laying down and stretching out.  When I tried to do anything else, my body basically fought it and tried dragging me back to the couch or the bed.  Finally, after trying to fight the good fight, I took a lorazepam and laid myself down to completely knock myself out.  The good news: on Tuesday (yesterday) I felt 100% better, and I feel better today, too.

It's a good thing I was feeling better today because we had an important appointment to get to: the radiation oncologist.  Yes, folks, that's the next wall to scale.  The actual appointment didn't take long, going over the side effects which...yay...include fatigue.  After a discussion with the doctor, I was taken to a room that had a machine like what will be shooting the radiation to my rectum.

Look, when you have cancer where I do, you gotta embrace it.

Sadly, no superhero side effects are expected, much to Kathleen's dismay.  I was also reminded that my ability to have kids will be taken away.  Kathleen and I had had this discussion a while ago, before cancer, and this particular hurdle doesn't hit me that hard.  Still, there's a little thud that hits you when the doctor casually mentions your ability to create kids will be gone.

The radiation process is one I've never read about, so I had no idea what to expect.  Essentially, today was a dry run of both scanning me and marking up my body for where the radiation is going to go.  Because of where my tumor is located, I have to lay on my stomach for better access, as it were.  The table you lay on is weird in that it actually has a big divot in the middle where your stomach is supposed to go.  You then lay down with your head to one side and your arms basically hugging the end of the table you're laying on.  They put a wedge up on your legs to help the comfort, and all told it wasn't that bad essentially getting "fitted" for my dots.

It doesn't sound that bad, and it isn't but you better be ready to be done with your modesty.  Before going into the room, I had the honor of taking everything off below my waste and wearing that wonderful hospital gown that opens in the back.  They were nice enough to follow me around with a sheet in the room as I laid down and used said sheet to cover my caboose as it were.  "Eh, I can handle this," I thought.  Then the nurse pulled part of the sheet down because...one of the marker points is right at the smile point.  It was great getting a little wedge there while they measured, let me tell you.

Still, the actual scan passed pretty easily.  If that's what a normal treatment was going to be, honestly this is going to be a picnic compared to the chemo.  The only other issue was once the first scan was done, the nurse, tech, and doctor all had to talk about about me in the monitoring room for about fifteen minutes, during which I couldn't move because they still had some measuring to do when they were done.  You get to the point where the side of your face that you lay on gets numb, the shoulders start to shake, but you are scared to move because they are making precise measurements of where to shoot radiation into you.

Then the tattoos.

Once they were all set with the measurements, they had to mark on my body specifically where the lasers lined up.  These aren't big markers at all, they basically felt like little stabs as they were being filled in...except for the one where the wedge was.  Yeah, they had to mark that.  Once done, I was able to pick up what was left of my dignity and change back to regular clothes.  The actual process was short enough to where I was able to work a half day today.

So, on Monday, February 4th I'll walk back into Beth Israel to start this journey up the second wall.  Once we get done with that appointment I'll know what the daily routine will be.  It's weird that we can't set the daily appointment in stone now, but I'm just a passenger on this journey so I'll do what they tell me.

That's basically it with the update.  We're waiting an extra week so that my body has a full chance to heal.  There's a decent chance that Kat and I will do something during that weekend before, which happens to be the Super Bowl, just to celebrate being chemo-free for three weeks.  What I REALLY hope is that the metallic taste that's wanted to stick around and the sensitivity to cold completely goes away, so that I can feel like I'm at least getting back to normal.  Tonight, I had baked potato soup and a sandwich from Panera, and the first taste always hit me with that metallic after effect.  It's frustrating when the taste of food is affected and your options become more and more limited, especially when you still have to eat in order to keep your strength up.

One major thing did happen during these past couple of weeks-someone very special could have chosen a ton of people to run for and actually chose me as her inspiration.

Jane Scott is the mother of one of my good friends from college.  For all the horrible things Facebook has done, it has allowed me to reconnect with her in the past year as she's gone through her own issues.  She's an inspiration as she's gone through cancer herself, her husband is going through cancer, and her mother is in poor health, going in and out of hospitals.  She still shows up with a smile on her face, and signed up for a run down at Disney last week.

She let me know a little earlier that I was her inspiration for her runs by letting me know what was on her playlist.  See, her daughter and I are friends thanks to the band, and while we were there we put out two CD's.  Jane had both CD's in her playlist, and as she ran she said she felt like it was both her and me cheering her on, and in response she hoped it would help me keep my attitude up.  She completed that run last week, and tagged me in her photos, one of which had my name on her number.

To say that I'm speechless and honored is obvious.  I don't mean to be an inspiration, and this isn't false modesty.  I just got dealt something and I'm just trying to get better.  I've had friends from all walks of life step up and remind me that I've made some sort of mark on this world.  I've also been reminded by being part of this cancer fight at large that I'm extremely lucky in so many ways.  I haven't been the model patient, just ask Kathleen, but one of the things that keeps me from getting too down on myself is the realization that everything has gone as well as it could.  The problems have been annoyances, and as the doc casually mentioned today I haven't had to be admitted to the hospital during any of this process.  There are a ton of treatments that don't go this smoothly, and for karma's sake I don't want to mess with that.

So, thank you Jane.  With what you have and are going through, it boggles the mind that I could be any sort of inspiration.

Now, we wait.  The radiation process will be: park in a special lot, walk in, get zapped, walk out.  Before treatment and at night, take a bunch of pills instead of having to live with a pump permanently installed during the radiation process. I got to deal with the mail order people today...joy.  I feel like I'm about to see a ton of pills, and I hope to God the biggest one is one I can swallow.

I'd also be remiss if I didn't mention thanks for those of you who contributed to the GoFundMe that my coworker Liz set up a while ago.  Just so you know, you've provided some security in knowing that if the weather is poor enough for me to not drive one day, I still can get to treatment, as well as providing for a couple of meals per week thanks to Blue Apron.  We finally set that up, as we wanted to wait till after the holidays to get the deliveries started.  We opted for the two meals per week, because based on our schedules that's usually the most we are in the same place at the same time to cook. We'll be able to do this for at least three months thanks to you, and if there's a week we know we won't be able to enjoy we can always push it.

I also want to throw a quick shout out to Adam and the GoFundMe he set up.  It's still up and running, and just as a reminder anything that is donated to it goes straight to my pocket.  Folks have been ridiculously generous already, and if no one donates another dime it'll have already been a lot.  That said, I just wanted to help the new dad remind folks this one is still out there.

Not sure when I'll blog again, the routine has been to do it after each chemo treatment, and once the radiation gets going it'll be a different routine.  Still, if you want to know what's going on, feel free to reach out.  I'll be happy to provide any updates, and I'll still keep doing this as well.

The First Wall is in Sight

Happy 2019!  Apologies again for the mid-week update, but between the holidays and the most recent treatment I decided to take things as easy as I could.  But here I am giving you an update on where things are.

The schedule of chemo really blessed me.  I was able to enjoy both my birthday and the Christmas holiday on the "off" weekend, which has been helpful.  I alluded to it the last time, but as we come to the end of this part of the journey, the cumulative effects of the chemo have started to take their toll.  Nothing major, dear readers, but I haven't been able to bounce back as quickly as I did in the beginning.

Let's start with the visit to the dermatologist.  If you recall, my oncologist had wanted to get a spot that I had on my leg for the past decade plus checked out, and it would serve as a chance to get my blooming eczema checked out as well.  The dermatologist at Beth Israel was wonderful, had a great bedside manner, and oddly enough had a connection to Carolina Basketball.  It helped give us something to talk about while he did the exam, in which he not only did a punch biopsy on the spot on the leg but scraped off a mole that I had...scratched a little too much.

Take a lesson kids, as much as it may itch, scratching usually doesn't do you any good.  In my case, it turned a mole that he wasn't worried about into one that had to be biopsied.  I'm still waiting on the results, but based on the discussion I had with the doctor it really isn't anything to worry about.  I'm sure the holidays have slowed down the results, and soon enough I'll have confirmation that there's nothing really to worry about.

As far as the eczema goes, the doc prescribed a stronger ointment, one that you can't get over the counter, and it's regular use has done wonders.  Thanks to its use, the itching has significantly subsided down to what it would normally be at this time of year.  Completely manageable, and even refill available.  It's fair to say that at least on that comfort level, life has been a lot better.

What hasn't been good is living in Boston when the weather has turned cold.  Sure enough right around the time of the dermatology appointment, some sort of crud decided it wanted to settle into my system.  Luckily, no fevers and no signs of the flu, just a ton of mucus that decided it wanted to settle in both my nose and lungs.  The lungs were especially fun since it would bring random coughing fits that would last several minutes.  Let me tell you, it's tough to get a full night's sleep when you wake up, even with NyQuil, at about 3 AM coughing for about five minutes straight and sounding like you're going to hack up a lung.

The hacking didn't impede me from my holiday shopping.  I did everything on-line, but for Christmas we always host my best friend and his boyfriend, the same pair who so wonderfully host us during Thanksgiving.  When we do that, my wife cooks an amazing chicken and andouille sausage gumbo, which requires a fair number of ingredients to come together.  We also have biscuits, made for the second time with the White Lily flour thanks to one of my wonderful North Carolina friends, that I have for breakfast along with special bacon if I can find it.

Where does one procure a cajun sausage and special bacon?  Why at this wonderful butcher shop called Savenor's.  There are two shops, one in Cambridge and one in Boston near MGH.  For the last few years I went to Cambridge, but this year the trip came up empty without any bacon and any sausage.  Luckily, the Boston location had a full selection of the andouille sausage, and let me tell you, this stuff makes a big difference over the mass-produced stuff you can get at grocery stores.  It's the closest we get to getting the locally made sausage you get down in Southeast Texas, and as a bonus they had a butch-cut bacon that included a cajun dry-rub.  As an extra bonus, I happened to catch a package that had been weighed incorrectly, and was marked at a significantly reduced price.

Once we got to Christmas Eve, it was our first year where we didn't have plans in a long time.  For the first couple of years we spent it with family, then once the realities of trying to travel this time of year hit we stayed home and would spend the evening with one of Kat's really good friends and her family.  Well, she moved this year and we had to figure out a new tradition.  Since we both worked, we decided to take it easy and come home, make some soup, and give each other a gift of a new book and chocolate.  Her gift to me?  Stuart Scott's Every Day I Fight.  It is an outstanding book, one where you can absolutely read it in Scott's voice and one that connected to me in a very personal way.   I can't recommend that book highly enough, even if you aren't going through cancer, because Scott is very frank in the way he talks about his feelings while going through the fight.  He vocalizes a lot of thoughts I've had, while wondering if I was being selfish or thinking of myself too much.  I finished that book in less than a week.

Christmas Eve also brought some wonderful gifts from my older brother and his wife.  The best gift may have been this bracelet.  It's been added to my right wrist where the #MAAGA and #KACA bracelet sits, and between the two I have a ton of motivation every time I look down.

Christmas itself couldn't have gone better.  Kat and I gave each other new headphones to use with our phones, mine being AirPods, hers being a good pair of Bose noise cancelling headphones.  They work well for each of our tastes, hers being too big to lose and mine being small enough to fit in my pocket and easily used by just opening the case and putting them in your ear.  Kathleen also surprised me with tickets to see BC play UNC!  I'll still be doing radiation then, but there isn't any reason to think I can miss the game as the treatment will be earlier in the day.  I was also far enough away from my last treatment that I was able to enjoy another Christmas treat: glass bottle Cokes with breakfast.  Man, there is no other taste like that Coke that comes out of that bottle.  I don't drink them regularly cause of the cost but for Christmas, I always treat myself.

The rest of the day was wonderful, a mix of relaxing and scurrying around to get the apartment in a presentable shape for our company.  Kathleen's gumbo was wonderful as usual, and the home made cornbread added a great touch to the meal, and we spent the evening just laughing life away, enjoying each other's company, and watching SNL skits that we hadn't seen in ages.  It was a great way to celebrate the season, and while the Cancer talk did come up, it was another day where I got to forget that I was fighting a fight and instead just...be with friends.

All good things must come to an end, and sure enough not only was Christmas over but it was time for the next treatment.  While the biopsy results are still pending, I did get good news with the other test I did when I went to BI the week before.  As I mentioned, I also had an appointment for a CT scan of the chest and pelvis.  The point of the scan was to look around and make sure that, again, the cancer hadn't spread.  All the numbers had been good but you don't want to go into your last cycle with signs that the cancer had entered into other areas of your body.  The great news from the scan was that the cancer, again, appears contained to the rectal region, and not only that but the lymph nodes that had been enlarged from the last scan were actually reduced in size.  Those nodes are the reason why this cancer is stage 3, and that they are starting to shrink while not spreading to other areas is a good sign that this round is working.

As the title of the blog would tell you, there's also a big moment coming up: the last chemo.  Last Friday marked part one of the last cycle, which means January 11th will be the actual last treatment.  It's getting real folks, because I have an appointment with the radiation oncologist on January 16th to start talking about that portion of the treatment.

I'll have more information about what I'm facing then, but it looks like my original timeline may have been a little off. It's looking like it'll be six weeks of a Monday-Friday treatment, and starting around the first of February.  Following that timeline, and assuming I don't miss any days, I'd be finishing around the ACC Tournament.  I'm hoping that the actual meeting results in a slightly different timeline, as that will be an...inconvenient six weeks.  The sooner I can knock out the radiation, the sooner I can focus on recovering for the surgery.

Honestly, the biggest thing has been the fatigue.  It was really bad on Monday and Tuesday, to the point where I slept a good amount of Monday just so I could be up for the New Year to hit.  As I was so close to a treatment, I couldn't have any champaign but Kathleen went to a local gourmet store in Harvard Square and found me some wonderful sodas that I could use to celebrate.  We were able to enjoy our traditional Rotel queso for dinner, and thanks to the naps I made it to midnight.  As for New Year's Day?  I barely moved, except right at the end of the day when I grabbed the food for the traditional New Year's dinner.

I figured since last year didn't go so well I needed to change up how we did the pork, black-eyed peas, and cabbage.  I also knew I wasn't going to feel like doing a ton of work because of the fatigue. Luckily, King's, the bar-b-cue place in Kinston where my grandparents are from offers a delivery service.  Using that, I was able to get some good Eastern NC pork, some well-cooked peas, some fine cole slaw, and even some Brunswick Stew for my lovely wife who loves the stuff despite never hearing of it till she moved to North Carolina.  I thought I had ordered hush puppies as well for the cornbread part, but either they were forgotten or I just didn't see them in the box.  No bother, though, we have a great cornbread recipe that's easy to make and, in the end, it's probably better to have eaten the real stuff instead of the fried pieces.

Today has been better, and if the pattern follows as each day passes I'll get closer to normal.  I'll have to do it next week without Kathleen as she plans to head down to Texas and meet her nephew for the first time.  There shouldn't be any issues as the week of a treatment is like a normal week for me, and she'll be back in time to celebrate the last chemo.  In the meantime, life rolls along.

So, once again, thank you for everything you did in 2018.  Without your love and support, I don't know if I'd be able to be as positive as I am now.  I only hope that it continues in 2019, and by the end of the year I'm thanking you for your help in making me a cancer survivor.  So to you and yours, Happy New Year!