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.