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!

Turning 40 With Two More to Go.

Bet you thought I forgot about doing this, eh?

Truth is, as each of these rounds hit a new hurdle tends to appear.  This past weekend the last thing I really wanted to do was stare at a computer screen at type stuff out, and really when you want an update you want it coming from someone who wants to do it.

It's been an eventful past two weeks, so before I go into the good I'll provide you with an update on the fun stuff.

This past weekend I had treatment number six, which completes the third cycle of chemotherapy.  The wonderful news is that I only have one cycle, or two treatments, left.  I just have to weather getting treated over the New Year weekend, and then two weeks after that.  Then it's time for the radiation...and more chemo.

As we get closer to the end of this phase (to use the Mortal Kombat analogy I'm two steps away from the first big boss), what's going to happen in the next phase is becoming clearer.  The radiation, right now, appears to be a six week course, happening each day Monday through Friday.  They'll tattoo me on the sides so that they can aim the device, and each day I'll go in, get zapped, and leave.  My oncologist has also mentioned that he still wants to give me a small amount of chemo during the course of the radiation.

That's as much as I have at this point, since I'm still about three weeks away from the end of chemo and then two weeks or so in between, we still have some time before we go into more detail.  Still, the end of the worst of the chemo is in site and I have to admit that is something worth celebrating.

This last round brought about some more annoyances.  The hair is still thinning to the point where I'm seriously considering if I should just shave it all off for the last four weeks and let it grow from scratch when the main chemo is over.  The metallic taste in my mouth doesn't want to leave, which makes eating a little more difficult when food doesn't sound appealing, luckily the further I get from treatment it starts to thin out.  I've invested in lemon drop candies in my desk to try to cut through the taste, as lemons/citrus really seem to knock that taste out.  The Arnold Palmer with no ice from Chick-Fil-A is still the best thing I've tasted since this past Friday.  The cold neuropathy is still there, and hanging around longer, making walking on cold wooden floors a bit more of a bother, and also causing cramps in my hand in the office when the folks in central decide that the a/c is needed.   All of this isn't new, but one thing attacked last week that has added a whole other level of annoyance.

I've always had drier skin during the winter.  It's been a mild form of eczema that always hits around winter when the apartment is drier than the Sahara, usually just around the legs.  I've never had it diagnosed as I've been able to treat it with soaps from Lush (thank you, Oaty, Creamy, Dreamy).  Well, last week around this time that eczema exploded around my torso, ribs, legs....it was like I lied down in poison ivy and just rested there for days.

It turns out that the chemo also dries out the skin, and when you hit a week after, the body has trouble adjusting to the fact that there's no chemo in the body but the cells are still reacting to the medicine.  In this case, my body reacted by exploding the seasonal itchiness that I normally deal with. The good news is that it isn't showing signs of any sort of allergic reaction which allowed me to continue the treatment.  They prescribed some stronger antihistamines and an itch lotion with menthol in it.  It helps when I put it on, but when it wears off the skin just...crawls.  The worst part is not being able to scratch it, because I don't want to make any area infected.  Unfortunately, because of the treatment, there's a higher chance of that happening.

I'm going to see a dermatologist on Friday for an unrelated issue...a spot on my leg that I've had for years that actually could have been a warning sign of my tumor, according to my oncologist.  While I'm there I'll let them look the skin over and hopefully there'll be some other treatment options provided.

Friday is a big day for another reason: they're going to scan my CAT!

Wait, that's not right.

(If you get that reference then chances are you are about my age and have an affinity for MTV movies about Texas football)

Friday is my CAT scan of my pelvis.  While the cancer markers are great, nothing beats actually looking inside and seeing how the tumor is doing.  The scan will also look around the pelvis and make sure that the area is as contained as it was back in September when the original scans were done.  We'll go over those results before the next treatment next Friday, but so far everything is showing that what they are doing is working, hopefully scanning the cat will just provide further confirmation of this.

Now, lest you think the past couple of weeks have been nothing but trouble, let me dissuade you of that right now.  I hit a big milestone the weekend before last, the big 4-0!

Luckily, the celebration hit during an off treatment weekend.  I have a routine when it comes to my birthday, and this year wasn't going to be any different.  Back in October, I booked a room at the Nine Zero, a room with a great view of the Boston Common, the Charles, all the works.  It had a nice king sized bed and a shower with wonderful pressure.  I like staying there every year because it's easy to access, works as a great rallying point for whatever I would like to do, and since it's a Kimpton hotel they have a free wine hour every night starting at 5 PM.  This year, I decided that the best way to celebrate 40 was to go to a new arcade bar in the city that happened to be close to the Nine Zero, Versus.  It was a perfect setup: bar food, old arcade games that allow you for unlimited play, and great drinks.  Knowing that this time of year is difficult for planning, I let folks know in October that was the plan so they had plenty of time to clear the schedule.

This would be the good time to remind you of the friends who had sent along the captain's hat, the stuffed rectum, the lego ship in a bottle, and the board game about the digestive system.  They are good friends we made when we first moved up to Boston because they were from the area of Texas Kathleen lived in.  They had since moved back to Houston, and as a lark I invited them to the celebration, not really expecting them to come because of what it would take to travel to Boston.  So, imagine my surprise when the elevator doors opened on our way down to wine hour and they appeared!  It was truly a gift that I didn't expect, and it just made the night that much better.  In the end, friends from all over gathered at Versus.  We ate, laughed a ton, drank some, and then wondered around playing video games-in the end teaming up to defeat Shredder in the new version of the TMNT arcade game they had.

That game is a lot easier when you don't have to feed a quarter into the machine when you die.

It was a great night, capped off by a great breakfast with our friends the next morning.  It was everything I wanted as I entered my fourth decade of existence.

Here's the thing, though, I hadn't turned 40.  My actual birthday was on the Monday following the weekend, and I took the day off from work because I wanted a day to celebrate myself.  How best to do that?  Why play poker of course.

Fair warning, the next couple of paragraphs go into the weeds of poker playing so if you don't care too much, you can skip ahead.

When I take a day to play poker, I usually build in one tournament and some 1-2 cash game time.  I always budget an amount that I can be fine with losing, but it's very rare that I come back empty.  For this day, I played a three table tournament with bounties, but wasn't able to last long enough to get my money back.  I caught a few lucky all-ins, but never had enough to actually play.  It was fun, but I hoped sitting at the 1-2 would change things a little.

The thing about playing 1-2, you are very rarely are going to be able raise someone out of a pot before the cards come down.  Even if you sit at the table with a fair amount of money, there's a decent chance you're going to be staring at at least one person who has a monster stack and will call just about any raise you put out there.  Thus, if you go into a pot, you either need to be ready to go all-out or to get out to minimize your damage.

A few hands in, I was dealt KK, and raised it up to $20.  Yes, I raised the $2 big blind to $20, and two people called me.  Like I said, you normally can't get people out in a cash game because they figure they'll catch cards, and they have the money to gamble.  Once the flop came out, I stared at a lovely King in the middle of the three cards, all which were a different suit, and no aces.  I had a set of Kings and there really wasn't a lot out there that could beat me.  I bet heavy, getting called by one of the really deep stacks each time.  The subsequent cards that came out gave me no reason to think that I was in any trouble, and my whole stack went into the middle.  The deep stack called, showing two pair, and the look of pain on his face when he saw my set of kings brought joy to my heart.

A few hands later, I woke up to AK off suite.  I just limped in, because AK looks great pre-flop but after the flop it usually doesn't hold up so well.  This time, however, an Ace popped on the flop and again, I had no reason to think I was in any trouble with my betting.  The same deep stack just called my bets until the last round, finally believing I had something.  I showed him my Ace and he just shook his head.

Those were really the only two hands of substance I played, and yet those two hands made it to where I walked out of the poker room with more than I walked in with, and that's after paying for meals and various treats.  It was exactly what I could have hoped for, and a great way to cap off 40.

OK, non-poker fans, done.

The rest of the week will be about letting the body recover, getting my cat scanned, and enjoying Christmas coming up next week.  We'll have the same good friends over who we spent Thanksgiving with, exchange gifts, and just enjoy the merriment before I go in for treatment number seven next Friday.  I'm not going to think so much about the treatment as I am about the fun we're about to have, and hopefully as we get closer the itchiness will go away.

Thanks, as always, for the love and support.  As we hit the Christmas season I can't tell you how lucky I feel for all that I've gotten while I've been going through this.  Words can't express the gratitude that I have for you all.  I hope you and yours have a very Merry Christmas, had a Happy Hanukkah, or just have a a few happy days.  Thank you.  So much.

Five down, a Lot More to Go.

Before I go into what's been going on, I wanted to start with a little bit of shilling but from great places.  There are now two Go Fund Me accounts that have been set up to help me out.  I'm..speechless at how much people want to help. I feel weird sharing them because I'm not the type of person who asks for money, and in truth the question of covering the medical bills will come at a much later date.  To BIDMC's credit, thanks to how insurance works, they are not worried about co-pays and what not for now, they just want to get me well.  I'm going to attack all this at the end.  That said, the treatment causes unexpected expenses: ordering in more because I'm the primary cook, parking at the hospital, drugs for the nausea and to sooth the nerve pain, all that stuff.  It's also allowed Kathleen to finish up this semester of nursing school without having to worry about taking extra shifts, so the generosity has come in handy.  So, I share because not only has it helped, but it's helped my attitude as I've, frankly, realized how many people I've touched in my life.  Just to note, I understand money can be tight for folks and it doesn't say anything about you as a person if you don't donate.  If you're my friend, you're my friend and you don't have to give money to prove it.  That said, people have asked how they can help and these are perhaps the most direct way.

The first one was set up by my good friend, fraternity brother, and member of my wedding party Adam Pohl.  This one goes straight to me, as it is set up to go to my bank account.  While there you can see all who has donated big and small, and it's an amazing cross section of people.  If this is how you'd prefer to go, head to this one.

The second one I just found out about this week.  My amazing co-worker and former Service Center mate Liz Hersee started this one with the intent of purchasing a Blue Apron subscription and some Uber cards to help me in transport back and forth to the hospital, especially on days where the weather may not be so good or I just don't feel like climbing in the car and dealing with Boston traffic.  Thanks to her and my...amazing...co-workers their goal has already been exceeded, but it'll be up for a few days longer.  I have to say, this one hit me when I first saw the number.  I'm not exactly an extrovert at work.  I don't hang around with folks after and don't do a lot of team things, but I like to think I help where I can and try to be there to answer any question anyone has.  To see how many co-workers have stepped up has been a reminder of just how many I have touched in the decade plus I've been here.  So, if your preference is to give to a fund that is won't go to my pocket but for a fixed cost, go to this site.

OK, that's all the shilling I will do.
****
If this is your first post, I'd recommend you go back and read the previous posts that talk about the discovery and the first few treatments.  It'll help you catch up.  if you haven't yet, here's everything in order from discovery to the last treatments:

The Fight Ahead (The official announcement)

The Next Steps (The meeting with the medical team)

Round One Done (First treatment weekend)

Step Two (Likening the fight to a game of Mortal Kombat)

Third Battle (Things a little tougher)

Four Rungs on the Ladder (Written while at treatment)

One thing I save you from for the new readers.  While checking out social media or these Go Fund Me posts, you may see the two hashtags of #MAAGA and #KACA.  The first one is NOT a political endorsement, but both tags are from my wonderful friends who are doing everything they can to keep me in good spirits.  Thus, we have "Make Al's Ass Glorious Again" and "Kick Ass Cancer's Ass."  Everyone who has been told what these stand for love them, even my oncologist and his Nurse Practitioner.  For those at the office, I have brackets with both of these hashtags on them in the Monty Python Holy Grail, feel free to help yourself to one.  It's a great excuse to say the word "ass" to company you may not normally would.

Look, I have rectal cancer.  I'm going to have a colostomy bag at minimum for some time when the surgery happens, and there's a chance it'd be permanent if they can't shrink the tumor enough. I have to have a sense of humor, and embrace it for all that it is.

I'm also not going to bury the lede any more before I go into a recap of the past two weeks, both the good and the bad.  When you read the Third Battle, you'll see that one of the things they do is take blood and test all sorts of things.  After each "cycle" they test for the Carcinoembryonic antigen level in my system, or the CEA level.  It's not a good way to tell if you have cancer before a diagnosis, but it's a good way to check on the progress of your cancer during treatment.  The normal range for the blood is 0-4 mL.

When I started this, I was at 42.4.  So...yeah, had cancer.

After the first cycle, or two treatments, I was all the way down to 10.5.  Clearly, this stuff is working. Awesome, we are making progress.

They tested it again on Friday, essentially after two cycles and before cycle three started.  It's down to 2.9.

That's right, I have a normal amount of CEA in the blood after only two cycles of chemo.  I still have a long way to go, and after this cycle I'm going to have a scan to see how much the tumor has shrunk.  But this is amazing news.  What my team is doing is working.  I have nothing but hope at this point, and my team is telling me that despite the strength of the treatment, I not only look good but my reactions have been pretty good compared to the worst of it.  So, when you read about the annoyances, know that's how I view them.  Simple annoyances that I have to work into my daily life. When you get numbers like this, it helps you put up with the side effects.

It's good to know this stuff because with each treatment, the side effects basically compound.  After the first treatment, I was basically back to "normal" in three to four days.  After the second it was a few more days, and with each one it's taken a few more days.  This time around I mostly felt normal, except the metallic taste in my mouth wouldn't leave, and the numbness that hits the back of my throat when I drink something with ice didn't go completely away.  Keep that in mind.

So what have I done in the past two weeks?  Oh, a few things.

Let's start with Thanksgiving.  It was slightly more difficult this year because of the instant numbness that hits when I touch things that are cold, and of course that Mother Nature decided to give us January instead of November temperatures, but that wasn't going to stop us from having a Friendsgiving.  See, for those that done know, Kat's family lives in Texas and mine in NC.  Due to work obligations for the both of us, and the sheer logistics of trying to "pick" a family, we stay here for the holidays.  But, luckily my best friend Bobby and his boyfriend Alex also stay at home and live in the area, so we get together at Alex's house in Rhode Island and cook the hell out in his kitchen.  We start with mimosas, bake a Pumpkin, two apple, and a lemon meringue pie, then the turkey goes in.  We inject the bird with a little Tony Chachere's butter marinade and then top the bird with Bobby Flay's Herb Butter on top.  This year I finally invested in a remote probe thermometer to get the right read on the bird temp instead of relying on that stupid silicone thing and the "open the stove to check" method.  I found one on Amazon for only $17 and it worked great, so I'd recommend that option for everyone.

I normally do most of the work with Kathleen on this part of the cooking because Alex and Bobby have their cooking/cleaning they do later.  It creates an even distribution of labor that way.  This year, however, because of how sensitive I am to the cold, everyone chipped in a little more than they normally would, and I finally invested in an apple corer for cutting up the apples.  But you think we just have turkey with desserts?  Oh no, my friends, there's more.

When Kathleen and I got married, one of the things we registered for was a Crock Pot that we still use to this day.  Kat's paternal grandmother loved that we asked for something so practical, and rewarded our choice with THE BEST dressing recipe.  Ever.  It's fresh cornbread, a loaf of bread, veggies, a pulled rotisserie chicken, chicken broth and cream of chicken soup, plus spices.  The satisfying part is making the cornbread the night before, and then ripping all of these things up to toss in the pot.  The bonus is that the chicken carcass can be dunked in a pot with herbs and water to create the base of the gravy that will be served later.  It gets mixed with corn starch and the drippings of the turkey for an amazing topper for your dressing and bird.

But that's not all!  With this meal you'll also get some of Bobby's amazing mashed potatoes that is mixed with whole-seed mustard.  You'll also receive, for this limited time offer, a side of fresh green beans that are sautéed with Apple Jack brandy.  That, my friends, gives you a full plate of Thanksgiving goodness.  All made by the best of friends, and enjoyed over wine while just chatting about life and enjoying the moment.  I look forward to the traditions of the holidays, but frankly Thanksgiving is my favorite one.  It's the best day spent with great friends, and the satisfaction of hard work paying off in the end.  I was also thankful that this happened after a treatment weekend than the night before.  Even though I had to work on Black Friday, it was a lot better than having to head to the hospital.

The weekend wasn't done, though.  After work I met up with Kathleen and we took advantage of the sale Best Buy was having on the new iPhone to get the XR and our first upgrade in three years.  Kat got the red and I got the blue, and thanks to the offer from Best Buy we were able to get the 128 versions for the price of the 64, and they will just be spaced out on our bill instead of us having to plunk down $1500 at once.  They are awesome phones and I'd be shocked if these don't last us the same three years the two 6s phones did.  That said, one phone will end up on eBay, and one will stay in the house as an emergency back up.  We celebrated the new phones by going to see "Fantastic Beasts: The Crimes of Grindelwald."  A little dinner and movie action, and going out for a non-treatment dinner date for the first time since this whole thing started.  The movie was...eh...you need to see if you're a Harry Potter fan but you'll probably feel the same about it as you did with the first part "Deathly Hollows."  A whole bunch of set ups, but I'm eager to see where they go with it.

But that's not all!  The last thing I did for myself before all of this started was go to see "Hamilton" thanks to a wonderful friend of Kat's who had a ticket to spare.  This was on the day that the cancer diagnosis was official, so the enjoyment was muted a bit.  I decided it was time to bust out of the apartment on a non-treatment weekend and do something I enjoy and haven't done in months: play poker.

I've been playing off and on ever since the boom hit in '04.  I'm not someone who can play on-line, I'd rather be at the table, feel the chips in my fingers, and talk to people.  Sitting at a poker table is a fascinating thing.  You can either be a jerk or you can make friends.  You understand that when you are in a hand against each other the goal is to win, but you can do it in a way that either puts the other person on tilt and make them make bad plays, or builds trust to where you respect their moves, and then gang up on the ones who decide to be jerks.  I'm not an extrovert by nature.  Far from it.  For some reason, though, at the poker table I love talking to the folks that are clearly regulars and hearing their stories.

I play both tournaments and cash games, but I don't go crazy at either-low level tournaments that are barely $100 for entry and $1-$2 cash games.  The nice thing about going in person is that instead of getting trapped with an idea of just instantly reloading when your account goes down, you have to pay cash to get chips.  When the chips are done, you are done.  It makes it to where you can only play when you have the budget to do so, and it takes a lot of the stress out of playing.  It's now entertainment, and if you can play well enough to win, it's a bonus.

This past weekend, I played well.

The tournament at Foxwoods didn't go well, I lasted about halfway through and then I made boneheaded all-in move when I knew I was beat.  But, once I was done I moved over to Mohegan Sun for the $1-$2 game and some Jersey Mike's before.  Mohegan went much better, as I played tight and patient.  One of the easiest mistakes to make in stakes that cheap is putting in your $2 with any two cards and not be willing to call a raise.  My rule, generally, is that if I'm not going to call a raise I'm not going to call $2.  I generally don't raise pre-flop unless I have the top of the top pairs, and even then I may just call a raise to see what comes out on the flop.  The strategy served me well several times, and I ended up not only winning back what I spent on the tournament, but what I spent on dinner, gas, and still had some left over to buy some Krispy Kreme donuts to bring home.  I also won the respect of a couple of seasoned players at the table, including one player who almost called anything you put in.  Once I won my last pot against him to end with the highest number of chips I had all night, I grabbed my tray and headed out, much to the disappointment of the rest of the table.

On Sunday, as with all non-treatment weekends, laundry called my name.  Once that was done, Kat had to go to work, so I decided to treat myself to another movie.  This time it was "Ralph Breaks the Internet." It's a sequel, so on some level it'll never be as good as the original, but it had some really good moments and was not only very enjoyable, but I suspect very rewatchable.  It was great way to spend the afternoon, although I do kind of wish I had brought my own soda instead of getting one at the snack bar.  The cold neuropathy is still there, and I suspect no one would have really cared.  It's something I'll note for the future, but man, that popcorn really tasted good.

Also, if you go to a theater where you have to put the butter on yourself, I learned a great hack.  Grab a straw from the concession stand, put it on the nozzle of the butter dispenser, and push it down the side of the bag.  Slowly dispense the butter up the sides of the bag, and all of a sudden you have buttered popcorn all the way through.  It's a great trick, and made for much tastier popcorn.

It was the most fun I've had in a weekend in a while.  In the end, though, I may have pushed myself too hard.  I woke up on Monday feeling OK, but then after my shower I randomly started dry-heaving.  Nothing came up, but it was something that had never happened before.  Since my desk sits probably as far away from a restroom as it could, I didn't want to risk that this was the start of a bad day and I'd have a situation where I wouldn't be able to make it, so I did something I haven't done in...years...I called out.

This is a major change for me, as growing up I had the idea of "getting through it" instilled in me by both my mother and stepfather.  If you feel even mildly bad, you can still get through it and save that sick day for a day when you are really sick.  That attitude built up my time off bank to where it'll allow me to get through this and still take some time off for myself, but it's also not going to help me get better from these treatments.  So, I'm determined to listen to my body more this time around.  The day off helped, and I was back to normal on Tuesday.

Well, close to normal.  I mentioned before that each treatment has the side effects compound on themselves.  It's tougher to touch cold objects without the hands going quickly numb.  As I mentioned, when this started I could get back to normal eating and drinking within a few days.  This past week, even on Thursday I was getting a fountain drink with no ice because the ice would slightly number the back of the throat which throws the taste buds off.  Cold bottled drinks were OK, although a little numbing.  The other thing that has become an issue is the hair.

So, my treatment is a mix of drugs.  One of them, Irinotecan, does have hair loss as side effect.  It's not the same as going fully bald that some chemotherapy drugs have as a side effect, but it does call hair thinning.  Every shower brings several strands of hair into the hands, and every comb and brush brings more.  I saw my stylist this past week for my midpoint cleanup, and she noticed how the hair was noticeably thinner than just three weeks ago.  It's going to take an adjustment in how I clean it as well as how I style it, but I'm not going to go for the fully bald look.  It's been four weeks since I started the new drug, and considering the main side effect was supposed to be diarrhea and that hasn't materialized, I'll take losing a few strands of hair.  Especially since it (should) grow back.

The other part that didn't go away this time was the metallic taste in the mouth.  It hung around for all two weeks, which made drinking plain water difficult.  If it's this way after only four treatments, how bad will things be by the end?  Will I need to be walking around all bundled up?  Will I need to be constantly sucking on objects in order to keep the taste out?  How much hair will I ultimately lose? Are these the only side effects I'll face, or will others start to creep in?

That said, there are only three more of these left before we go for radiation.  That will be a completely different set of obstacles to deal with, but that is a bridge we will cross in the end of January.  I will know more as we get closer, as they just don't start zapping you immediately.  There will be a scan to tell just how much things have gotten better, the tumor board will meet to confirm the treatment plan, and then we sit down with oncologist and radiational oncologist to confirm the length of treatment and the chemo drugs that will be put in at the same time.  The wonderful news from this past week?  My little side pump that's only an accessory for the weekends will be a daily accessory during this process.  That news was...exciting.

Luckily we won't be dealing with this till the end of January, and it's just a temporary thing that'll last 4-6 weeks, but it'll be another adjustment.  One I'm ready to make thanks to the love and support I've gotten from all of you.  Keep it up, as there are many more races to be run on this.  I almost could look at this like a triathlon.  You have the chemo, then the radiation, then the surgery, and right now we are a little past the halfway point of the first leg.  Let's hope there aren't any stumbles along the way.

Four rungs on the ladder

As I've come to know what to expect...mostly...from when we have a treatment weekend, I thought I'd  go a little different and type up what's going on while sitting in the chair.  So, greetings from Beth Israel Medical Center's Shapiro Center's Ninth Floor.

Man that's a mouthful.

Treatment Fridays are one of the ultimate definitions of "hurry up and wait."  Because of the length of my treatment, I really have no choice but to take a morning appointment so that everything can be done before the floor closes down.  So, for anyone thinking "well at least he gets to sleep in a little on treatment days," forget it.  The alarm goes of at the same time, and with the traffic around the Longwood area I almost spend the same amount of time in the car that I do heading to work.  This week also saw the complication of snow for the first time, a real danger of the timing of my treatment.  The good news is that the storm that hit the east coast did so during the evening, and by the time I woke up it had warmed up and turned over to rain.

Let me tell you, the moment I walked up to my car to see the only snow left on it was on the windshield was one of the best moments of my day.  For those of you that haven't had the pleasure of cleaning snow off of your car, it can be an exhausting process.  First off it requires the investment of a snow brush, and depending on how good that brush is can significantly impact how much work you have to do.  When it's only on your windshield AND you remembered to leave your wipers up so they don't freeze to the glass, you've got yourself a good start to the day.

The day at the hospital ends up being basically the length of a work day.  I check in on the Ninth floor at 8 am, and walk to the treatment area to get my vitals and have the line installed into my port.  The nurse then grabs three vials of blood to be sent down to the lab for testing.  They can test for just about everything, but mostly they are looking at blood cell counts, liver function, sometimes testing the cancer marker, all that fun stuff.  The blood draws make sure nothing is in the danger zone and can affect what they do with the treatment.

Once the draw is done, it's back to the waiting room just to be called back to an exam room to speak with my Oncologist and the NP he works with.  I mostly deal with the NP, who is great.  We chat about how I feel, any new symptoms that popped up, and just get a general feel for how things are progressing.  She's easy to talk to, which helps considering the type of cancer I'm dealing with leads to a lot of frank stuff you don't talk about in polite company.  Those conversations so far have ended with no surprises.  She then grabs the oncologist, who checks over the results, talks a little more big picture about where we are, and is responsible for ordering the medicine I'll be treated with during each round.

Remember the blood draw?  Today's showed some issues with the liver function, which led to a discussion about whether I've added a medicine to the mix or increased my drinking.  As I'm only taking what has been prescribed save for some heartburn medicine that they are aware of, and my alcohol intake has been one drink on the non-treatment weekends, then it's pretty clear that the issue is the chemo.  The good news is that they've been very aggressive with this treatment, which means they've left themselves some room to dial things back and still get the same result.  Thus, today's treatment of the main 5FU drug will be scaled back slightly to avoid doing any more damage to that wonderful organ.

It should also be noted both the oncologist and the NP approve of the #KACA and #MAAGA bracelet.  Both got a hearty chuckle when they saw it for the first time and approve of the message.

Once the visit with the medical team is done, it's back to the waiting room.  By now, you're looking at around 10 AM and the room has pretty much filled up with folks waiting to be seen and treated.  The wait is mostly to get all the medicine and treatment processed and assign me a chair.  Eventually, the name is called again and I make my way back to the treatment area to sit at a station headed by a pink reclining chair.

Each station has a cart full of the supplies needed, the IV drip pole, and the reclining chair that is my home for the next few hours.  My nurse will eventually greet me, talk about anything that changed over the last treatment, and then hook up the medicine into the line coming out of my port.  They first put in some pre-meds to get my body ready, then one bag of chemo, then the second round.  All told, once the medicine goes in it'll take about four hours for everything to be put in.  These four hours will include multiple trips to the restroom as that is a lot of saline to put in your body with the rest of the drugs.  It's not as easy as it sounds, as you have to unplug the drip pole from the power outlets and wheel that sucker with you to the restroom.  You also have to take care to not pull any lines out while going through this process.

Once all that medicine is done, my little medicine pump is installed with the final round of treatment. The pump becomes my buddy for the next 46 hours, and again the goal is to make sure to not pull the line out of..anything...or to make sure to not damage the device that is providing this medicine to me. It's easy to forget when walking that you have this line just hanging off of you that can catch on doors, chairs, whatever.  The nice thing is that, usually, I don't feel hamstrung in terms of energy while going through this process, and that means that Kat and I can take an outing on Saturday which helps us do something that feels "normal."  This involves a visit to the grocery store for supplies, somewhere for dinner, and then a trip back home.  It's not much, but it breaks the monotony of the weekend.

I've been lucky so far that during the weekend I get treated that I feel good enough to do some normal activities, but what stings is that I can't do more.  For instance, this weekend Kat and I would love to go see "The Crimes of Grindelwald."  However, as this is the treatment weekend I have to pass because a) you never know what might happen and you don't want to be in a theater if a wave of nausea or worse hits b) because of my cold sensitivity I can't really have a drink during the movie, which means I can't really have popcorn, and that, my friends, kills the movie experience for me.  Anyone that knows me well knows I HAVE to have some popcorn at the theater.  Yes, I'm that person.  So, we'll figure out a way to see it next weekend.

After 46 hours I go back to BIDMC to have the pump taken off, the line taken out, and to have a Neulasta installed.  You may have seen commercials on this device, basically it's a drug that helps lower the risk of infection during chemotherapy because, well, chemo itself can increase the risk of infection.  It's a little device they put on your arm, and once activated it injects a tiny needle into your arm and sits there for 27 hours.  At the 27 hour mark, it beeps and then takes 45 minutes to actually deliver the medicine.

Now, you may be looking at the fact that an electronic pump is attached to me for 46 hours, and then a little electronic device installed after that for 27 hours, and wonder, "Al, how do you bathe?"  Excellent question, the answer is...I don't.  The last shower I will take until Tuesday morning was this morning.  Luckily, for Monday's I have a spray bottle for my hair, deodorant for the body, and a body spray for the rest so that I don't offend my co-workers.  Needless to say that shower on Tuesday feels good.

That's a treatment weekend.  It's not overly stressful, it just has its different levels of inconvenience.  It's made easier having Kathleen around to help me out during different spots, and on the Mondays the Neulasta is installed I take a couple of hours off from work.  From there, it's about recovering from the treatment and getting ready for the next one.

The last couple of weeks have followed with that recovery.  It took until Thursday last week before soda tasted good again, and even though I am expanding my coffee palate, my system isn't used to drinking the stuff yet.  So, I've been trying to drink the wonderful gifts provided but it'll take some time as I'm not quite used to it yet.

Anyway, now it's time to just sit back and let the medicine do its work.  Hope everyone has a great weekend and a great Thanksgiving, and a small reminder, if you feel so compelled to help, there's a GoFundMe that's been set up for me, thanks to the wonderful Adam Pohl.  Thank you, so much, for everyone who has already contributed.  You have no idea how much it has helped me during a time when so much else has been going on.  It's added a level of stability that is huge, so thank you so much.