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.

Third battle through, little bit tougher

What a two weeks!  It feels weird that this much time has already passed, especially since I've now gotten though my third treatment.  One month down!

First off, I'm going to start with a Thank You for those who contributed to the GoFundMe.  You think you'll be ok with what you have, but then you realize that you have to pay to park at the hospital, you and your wife don't feel like cooking because of schedules and that cooking requires trips to the grocery store to get ingredients, and so ordering food in sounds good.  Or that while you don't have to pay the medical bills until way down the road, you still have to pay something for the medicine they want to give you.  This eats up through your available funds a lot quicker than you expect, and this money that has come in has been a huge help.

If you are a new follower and catching up with me for the first time, by all means, feel free to contribute.  Trust me, each little bit takes a huge amount of stress off, and if you are wondering if there is some tangible way you can help, that makes it pretty easy.

Ok, enough pandering.

I've mostly figured out how the cycling works by now.  Once the medicine enters on Friday, the side effects hit me almost immediately: the cold neuropathy.  The best way to describe it, anything that is cold creates an instant numbing feeling in the feet, hands, and most importantly, the mouth.  What does that mean?  Walking and touching cold things is difficult, as the appendage will almost seize.  As we get closer to winter it's not going to get much better, but that's what layers are for.  More importantly, the wonderful suggestion you all have made about eating popsicles or cherry-lime Sonic Slushees are not good, because the moment something cold gets in my mouth, a lump forms in my throat and the sweet taste just isn't good anymore.

Not going to lie, that sucks.  I'm a big drinker of cold sweet tea and love soda.  Yes, those are unhealthy things, especially the soda, and in a way it's a good think this side effect will keep me from enjoying these items, but it still sucks to have something you enjoy taken away from you. After the first round, the ability to drink soda returned about three days after the pump was removed.  This last round, it didn't really return until about Thursday or Friday.  The upshot is, until it comes back, the fluids consumed are all hot.  Either lukewarm water with a citrus splash to give it some flavor, or coffee, or tea.  The ability to drink sweet coffee has been a Godsend as it at least gives me the caffeine shot I'm used to in the morning.

Now look, really the only side effects I had are that and the tiredness.  It took about a full week for my body to return to it's normal cycle of rest, and I probably didn't feel like "myself" until Friday/Saturday of last week.  But you know what I haven't been dealing with?  Crippling nausea, massive diarrhea, hair loss, and a general ill feeling that requires me to miss a huge amount of work.  I'm lucky.  Ridiculously so, and it feels a little whiny to be complaining about not being able to eat all the things that I want to.  But, let's be honest, if you had something taken away from you, even if it was small, you'd probably be upset, too.

The other thing is that my appetite is reduced for the weekend of the treatment and stays fairly low for that time that the neuropathy hangs around.  This caused me to lose about 6 pounds at first this last cycle.  I've kept an eye on it as sudden weight loss could be a sign of something bad, but this quickly changed.  Last Saturday, Kathleen and I decided to head to the suburbs and hit up Texas Roadhouse in Walpole and it...was...so...good.  The first taste of their sweet tea and fresh lemon and a smile just curled across my face.  No lump and the sweetness tasted so good.  I then had a full Caesar salad, an 8 oz sirloin, and a full sweet potato that was loaded.  I then topped that off with some of the yeast rolls and munched on peanuts.  The appetite was back, and the rest of the week it returned with a vengeance.  To the point that when I went back this past Friday, I was pretty much the exact weight I was two weeks prior, although that number is still about 7 pounds lower then when I started.

That first week brought a few grumbles from me, not going to lie.  Unfortunately when I get like that the only person I can vent to is my saint of a wife.  The same woman who is working part time, going to nursing school with clinical classes that require her to be at Mt Auburn at 6:30 in the morning twice a week and still trying her damndest to learn this stuff so she can advance, and somehow she has to find time to soothe my soul.

Let me just say this about her: as many good wishes as ya'll have had for me, reach out to her as well.  In a weird way, I'm doing the easy part: I'm just going where they tell me to go, doing what they tell me to do, and letting the medicine do its thing.  She has to support me, support herself, and stay in a right headspace in order to focus on succeeding.  This is not easy for her at all, and it's even tougher as our closest friends are spread all across the country.  So, spare a thought for her as you would for me.  If you know her, you know how difficult this has been for her, too.

Once the appetite came back, I ditched the coffee and went back to soda.  Since it's something I know that was going to be taken away from me once the next round began, I wanted to consume as much of it as possible.  Probably not the healthiest thing, I know, but when I met with the awesome docs on Friday they really didn't see a problem with it.  The biggest thing about this fight is being in as good a mental space as you can be, and if food allows you to be happy and be in a good space, then they are good with you doing it.  If anything, the sweets help keep my weight back up and keep me from yo-yoing too much.

Thus, we proceeded to Friday last week.  On Thursday the apprehension started to build towards the treatment, the cold sensitivity, the loss of soda, and as I walked up my doorstep, I saw two packages.  One big box and one envelope, both marked for me, I didn't have a clue about what was in either.

As one does, you open the box first.  Inside:

This was a absolute gem of a gift given to me by Jamie Holcomb, or you may know her as Jamie DeMent.  If you watch a fair amount of the Hallmark channel, chances are you've seen her cooking for their daytime show, all of which come from the hard work her and her husband do out at their farm.  I've been honored to know Jamie since we were in preschool together.  PRESCHOOL.  She was able to get my address...how I don't know...and went to A Southern Season and picked up all these wonderful gifts from Chapel Hill and North Carolina in General.  The Carolina Blend coffee is wonderful, has a bit of a nutty flavor and tastes great in the new mug.  We have a caramel pump we use for sweetener, but I've been drinking more tea so the amber sugar will likely come in handy, and then the cookies and brittle are just wonderful.  

Jamie is a sweetheart and a good soul.  The card reminded me that people back in the Tar Heel State are thinking about my ass and want it to get better.  This alone would be enough to bring a smile to my face at just the perfect time.  

Then, I had an envelope to open. The return address was from one Joey Powell.  You may know him as the Executive Director of the Me Fine Foundation, a fellow Tar Heel, and all around good dude simply because he had a good job in radio sales and left it behind to help families pay for the unexpected expenses of dealing with a sick child.  The medical bills are the part you know, but as I've quickly discovered, it's the more immediate things that sneak up on you. The parking at the hospital, the electricity bills, groceries, hotel costs to stay near your child.  He and I have become friendly on social media because of a shared love of the Tar Heels and a common friend in Phi Mu Alpha brother Connie Sawyer.  

It turns out Joey is a big Carolina Hurricanes fan, and the foundation has done a fair amount of work with the Canes, creating some connections.  I mentioned how sweet the new third jerseys were for the Canes, and Joey went to work.  He had Connie get my address from me, and worked with Mike Maniscalco to get his hands on a brand new authentic Hurricanes Third Jersey.  It is beautiful, to the point I had to put it on immediately. 

I immediately tweeted out my thanks...tagging the Canes since it was their sweater I was wearing.  

I was floored on Friday morning when this tweet came out:

Everyone send some positive vibes to our friend @albhood

You got this, buddy 💪 https://t.co/PbTO2wVGt9

— Carolina Hurricanes (@NHLCanes) November 2, 2018

I mean, I'm floored.  The original tweet had nearly 200 likes, the tweet from the Canes had 300, dozens of you not only tweeted your well-wishes but also added your support to me.  I hope I've been able to thank each and every one of you who responded directly to me.  If not, consider this my official "thank you" for your thoughts.  Every positive vibe just makes me stronger. 

So, of course, with the spirit of the gift, I went to Beth Israel for my treatment Friday with the Canes on my chest.

This treatment was the roughest.  By the last half an hour I was feeling really restless, my system was battling waves of nausea, and I was in probably the most agony that I had been.  It still wasn't nearly as bad as it could of been, and luckily no fluids came out.  Once the treatment was done, I started to instantly feel better.  

I struggled to stay away for the UNC exhibition game on Friday night, and missed the Canes game on Friday night.  I got a glorious ten hours of sleep thanks to Lorazepam, my nerve medicine, and two anti-nausea pills.  All told when I woke on Saturday it felt like a real reset, and for the rest of the weekend I felt pretty good.  

Seriously, if this is the worst I'm going to have to deal with, part of it was my own idiocy.  I forgot to bring my anti-nausea meds with me on Friday and they would have helped.  I also made it a point to have a bigger breakfast from McDonald's to enjoy one last 20 oz coke before I knew it would be taken away from me.  I also skipped lunch because I didn't have much of an appetite, and all that combined to just knock me out.  BUT, we ordered some chicken pho for me on Friday night and the broth, noodles, and chicken were a wonderful combination.  When I went to sleep on Friday, I was back in a good place. 

Saturday passed with watching another disappointing effort from the Tar Heels on the football field, but afterward we were able to make an afternoon sojourn out to Walgreen's, PetSmart, and Wegman's before having a dinner at IHOP.  I was so thankful they added savory crepes to the menu, as I was able to have a egg, ham, and cheese combo that tasted good and was just enough food.  Today, well, I got up, had some coffee, had some hot bar items from a local store, and now am pump-free for another two weeks!

But the best news of the weekend.  Four weeks ago when we started this process, they measured my CEA, or the Carcinoembyronic Marker.  It was literally the only blood marker that showed I have cancer, because everything else is so good.  When they are looking at this number, they want a number between 0-4.  That first test in September had the number at 42, clearly what they were expecting with a 2.5 cm tumor in the rectum.  They measured this past Friday to check the effectiveness of the medicine, and after just two treatments (remember this was before the third), that marker has gone all the way down to 10!  I still have the tumor, obviously, and it's still above what it should be, but clearly what they are doing is working!  

The fight goes on!  It's working, and I'm getting better, I know it.  All of you out there who have sent gifts and passed your well-wishes to me, I'm convinced that's played a part because it keeps my attitude positive and allows me to continue to grind it out.  So thank you all.  For your gifts, for your donations, and for your positive thoughts.  They all help me so much.  

Don't be afraid to reach out if you have any questions.  I'll definitely answer them.  In the meantime, send along your thoughts hoping that these side effects don't last as long this time.  

Step 2 of the Mortal Kombat Ladder

So, anyone who played Mortal Kombat growing up knows that you can choose the path you go on to win the game.  Two weeks ago I referenced the first treatment as Round 1, but I realized this fight is more than boxing rounds, though.

Each step in the Mortal Kombat fight-or Capcom vs Marvel if you prefer-has rounds within the battle.  You go through multiple fights before conquering the step.  The idea is that each step is supposed to be tougher, although sometimes the opponent that is higher in the ladder is an easier match, so that while your first opponent may take three rounds, maybe the next opponent is wiped out in short order.  Ultimately, though, the top of the ladder is the toughest and with radiation and surgery still in view, I have to view this process as a long climb with battles in between.  

I use that weak analogy...or not so weak...to explain how this weekend went.  This weekend was the second opponent, another round of chemo with a new drug added to the mix.  One would think this weekend would have been tougher, and there were some new challenges but otherwise, things are faring well. 

Let's go back in time, shall we?  When last you saw the update, I was coming off what I thought was a good weekend.  I was weak but surprised otherwise at how relatively well I felt.  It turns out there was a crash that was set to hit.  

My intention all along has been to do these treatments every other Friday, get it out of my system as it were by the end of the day Sunday, and go into work on Monday.  I followed this plan to a T two Mondays ago, only problem is my body didn't like the idea.  Essentially, the steroids that they used to help my body accept the medicine was making me very restless, and from Sunday night through Monday the upper part of my body just couldn't get comfortable.  I was jittery yet I couldn't stay awake.  It was ridiculously unnerving, and the sensation when I drank something cold was still there. That was a problem considering I'm a morning soda drinker.  

I toughed it out for five hours but had to tap out and go home,  My body wanted to try and sleep, and I grabbed a bit of a nap as soon as I got in.  It helped, but the restlessness still remained.  On Tuesday I went into work more rested but still not feeling 100%.  It was then the wonderful NP under my doctor called to check in and see how I was doing.  I mentioned the tastes and restlessness, and she told me that it wasn't a surprise, and prescribed me some Lorazepam.  I also have been prescribed some gabapentin, which is a nerve tonic medic to target the pain where the tumor is and allow to me sit for long periods of time comfortably.  I began taking the gaba over the weekend, but on that Tuesday night I took the Lorazepam as well, and woke up Wednesday tired but restlessness gone. 

That really was it.  It took a couple of days to get the restlessness out of my system and once it was, I pretty quickly started feeling like nothing was wrong.  My appetite disappeared during that first weekend and because of the sensitivity to cold I had no desire to drink anything.  Combined with all that I lost about 5-6 pounds pretty quickly.  Nothing to worry about simply because when you don't eat or drink, the body still will get it somewhere...and I have some to spare. Honestly, by last weekend I was feeling the best I had in ages because I could finally sit for a long period of time, and all the step 1 chemo had flushed from my body.  

In the meantime, the fight waged on.  Kathleen worked with a couple of my friends to order some...bracelets:

500 of these beauties.  One side for #KACA and one side for #MAAGA.  If you want one let me know, it's the sensation sweeping the nation! 

Seriously, those of you that have already asked for one and have it, thank you.  It's my own way of just embracing this fight with some humor.  The humor alone bring positivity and seeing the smile on people's faces when I explain what each hashtag means is priceless.  One will be on my wrist throughout all of this.  

Getting gifts turned out to be a theme of these two weeks.  Earlier this week I came home to two packages.  The first one included this wonderful lighthouse that reminds me of where I spent a huge amount of time during the summer.  It's a great gift and a little bright spot in the gloom as the sun sets earlier and earlier in the day.

So this was beautiful.  Then, the same friends who sent the captain's hat with the lego ship in a bottle surprised me with a box.  No clue what was in it, and knowing their sense of humor I was a little apprehensive.  I bring up the box, open it up, and this little guy is sitting face down.  

Yes, it's plush rectum. 

I think it's fair to say it's tough to be mad at your rectum for getting cancer when it looks this cute.  I mean, ultimately it's not his fault that he has a tumor.  Near as I've been able to figure, the tumor is located right around the lower...umm..arms under his smiling face.  He was a wonderful comfort over the weekend.  

Friday brought the next step on the ladder.  After pulling blood all the numbers look good, save for my potassium count.  The Liver function, however, was great, which is what they were looking for to add the final drug to the mix: Irinotecan.  The first treatment was primarily aimed at reducing the size of the tumor, this bad boy is meant to help preserve the rectum and the sphincter so that I'm not using a colostomy bag for the rest of my life.  Goal one: kill the tumor, goal two: have proper bowel function.  It was made clear that if I didn't react well to the Irinotecan, it would be discontinued and we'd just focus on the tumor.  

So, one would ask, how do you know you are not reacting well to the drug?  Well, my doctors said the nickname for the drug is "I run to the can."  That's not because you have to pee constantly. 

The extra drug also added about two hours to my visit at BIDMC as it was a whole other bag that had to be added.  There's the steroid and pre-drugs, then the actual Irinotecan, then the prep for the bag.  Three bags, each full of the drug an saline.  The bad news, I had to run to the can, but the good news it was because I was so pumped full of saline fluids had to go somewhere.  But you know what isn't fun?  Having to unplug the pumps and wheel your tubed-in self to the bathroom and unwind everything so that you can do what you need to do, wash your hands, and then wheel this thing back and plug it right back in.  

Then do that about four more times. 

This treatment was going harder than the first.  I ate a sandwich drank some warm ginger ale before the big treatment started, but as time went on, I tried to drink water with ice it and I couldn't even pick up the cup without my hand just absolutely being shocked still. When did manage to get water down, the lump in the back of my throat reappeared and I just couldn't stand the taste.  This was going to be a problem. 

Otherwise, though, I felt a lot better than when I left two weeks ago.  The appetite is still down, not really a surprise when you think about it, but I overall have been shocked at just how much...better...I've felt for this round.  It took some time to think about it, but then I realized a big difference from two weeks ago: I'm not getting over a port placement surgery this weekend.  I mean, one day after getting my chest cut open and having some mild sedation and anesthesia, I had to then get this first step of chemo jammed in.  I also had a reaction to the steroids without any sort of medicine to help me out.  This time?  I had the lorazepam ready to go to take each night, and I feel so much better with full nights of sleep and the gaba to help take care of pain. 

The one pain was figuring out how to drink liquid.  Yesterday morning I took a quick taste of a Pepsi we had in the fridge, and it just didn't taste right.  The cold was not acting well with my taste buds and the sweet just tasted as artificial as a diet drink.  Worst yet, my sweet tea just didn't taste good either, and I was facing a weekend without caffeine and low fluids again.  

So, if you have known me for a while the next statement is going to shock you: I'm now a coffee drinker.  I'll admit, the past week or so I've been looking at the pots in the break room and instead of thinking "Gross," I've been thinking "you know, even if I put cream and sugar in a cup it's probably better for me than soda."  So, we bought a bag of Dunkin while we were out on Friday, and yesterday morning Kat fixed me a hot cup the same way she takes it...and it tasted good.  Real good.  No reaction to the taste, no metallic feeling in my mouth, and it delivered the shot of caffeine I needed.  

So what to do about the non-caffeine fluids because, not going to lie, the first trip to the bathroom told me I was pretty dehydrated.  Well, we have a kettle for boiling water for tea/coffee.  What's to say I couldn't just heat up some water and mix it with cold water, bring it up to room temperature, and add a little lime juice to give it flavor?  Tried it and BOOM, no metallic taste, no lump in the back of the throat, and three glasses later I feeling pumped up.  Folks, we have our routine for chemo weekends and frankly, I may be a fully converted coffee drinker. 

I felt good enough to where I was very frustrated at the results of both the Tar Heels' football game and the Hurricanes hockey game yesterday.  I didn't throw my pump as I threatened to.  I wanted to.  Didn't do it.  

Once that disaster was done, we got in the car and went on a late afternoon jaunt to check the office for packages, go by the store, and have dinner at PF Chang's.  It would be my second Asian-themed dinner of the weekend as one of two of our wonderful friends treated us to ordering sushi in on Friday night.  Sadly, I ordered Philadelphia rolls prior to finding out that the salmon was just smoked, not cooked all the way through and apparently because of Mercury that's a no go.  The good news is that I ordered some dumplings and Idaho rolls that tasted really good, and I was able to eat most of them anyway.  On Saturday, I enjoyed some of P.F.'s awesome crab won-tons and their pork dim som.  A warm pot of citrus herbal tea completed the meal, and overall I was able to stand being outside of the apartment for a total of about 5 hours yesterday.  

I'm typing this up as the pump is beeping, and in about an hour I'll be heading to the hospital to have it taken out.  The plan is to relax the rest of the day, take the lorazepam tonight, and attack work tomorrow hopefully in a better place than two weeks ago.  

By the way, I buried the lead, as you could probably figure out from my galavanting yesterday: No running to the can!  I'm knocking on everything I can, right now but it's possible that the worst part of this treatment will be the inability to drink cold sodas for a few days, and having to drink more warm water for fluid replacement.  Wait, you mean I have to eat healthier because I'm having strong chemicals poured into my body? 

Well, everyone needs a motivator.  

Once again, I have to take the time to say "thank you."  People checking in on me, asking how I'm doing, stepping up for me, and sending both solicited and unsolicited gifts.  Perfect example: now that I know I'm going to be drinking more coffee, I wanted to be able to enjoy a couple of blends you can only get in Texas from a supermarket chain called HEB: The Houston and San Antonio blend.   I put out a request on Facebook and I get an instance response from my wonderful friends.  I mention we don't have any more BoJangle's seasoning and that the chain appears to not be selling it on-line anymore, and another wonderful friend finds it on Amazon and sends it over.  The Lego ship, the lighthouse, the stuffed rectum.  All of it. 

Someone else reaching out about the patient advocacy she does, which I promise I will look at.  The folks at Tar Heel Blog being understanding about my writing.  Just the general jokes and positive vibes.  The folks at work who feel like they want to do something because of what I've done to help them.  It's overwhelming and weird as well, because I just try to be me.  I'm prickly and introverted, but I want to help when I can and generally think of myself as a decent person.  It's been odd in a way to see how many people I've touched to the point where they want to do something...anything...to make my life a little bit better as I climb this ladder.  

Also, I can't forget about the Go Fund Me.  My wonderful friend and one of the groomsmen in my wedding Adam Pohl set this up, and what's been donated so far is amazing.  If you feel like you want to help and you aren't sure how to do so, that link would be an easy way to do it.  I think the lower amount you can give is $5, and if you want a bracelet for your donation, let me know.  I'll be more than happy to stuff a bracelet or 20 in an envelope and send them your way.  

At the end of the day, this all about #KACA and #MAAGA.  Thank you for everything so far, and keep it coming!  I promise if you reach out I will answer.  

Round One Done.

After the tests, the anxiety, the meetings, the planning, the working-finally, we get started.

The past week started with getting a port implanted inside the body.  For those of you unfamiliar with what I mean, basically when it comes time to deliver chemotherapy, there are a couple of options, but for most it's a direct entry into the blood stream.  Instead of forcing you to take an IV every time, the doctors can install a device inside your chest that gives them direct access.  

Think of it like Tony Stark's electromagnet in his chest, only...not quite.  But same idea, a device installed for easy access and to help save your life. 

The doctors wanted to implant the port this past Thursday, give me a day to recover, then start the chemo on Friday.  The upshot of this was that I had to shower twice-once on Wednesday night and once on Thursday morning-and it would be my last shower until Sunday.  Why two showers?  Well to implant the port, they have to actually, you know, cut you open.  To help make sure I was sterile, I showered with a special antibiotic soap around the incision area on Wednesday night, then did it again Thursday.  You have to be careful when you do this, too, as the whole point is to reduce the chance of infection, so you have to have clean towels, clean clothes, etc.  Not exactly easy in a small Boston apartment, but luckily I had planned for this last weekend and set aside the clothes.  

The surgery at BIDMC was easy.  The port was coming at a good time as they had to go into my hand for the IV.  After getting you wired up, you are wheeled into this room with a long flat table and a HUGE monitor.  Turns out to implant the port, they look at this live X-ray to make sure it gets implanted in the right spot.  The monitor was turned to my head so I could actually see this as it happened.  I had just enough medication to where this was cool to me.  I guess it helped that it looked like an X-ray, black and white, instead of like a live look inside my body.  But I could see my ribs, heart, lungs, and where the port came to rest.  The nurses, techs, and doctors were all wonderful.  They joked with me, we chuckled about the day, being the first patient of the day, and they made sure I was comfortable as the surgery occurred.  They also made sure that if I showed any sign of feeling pain, they gave me some more anesthetic.  

The bad part of all this was that I had to go home with a big gauze package on my left side, and could barely move my neck.  It was annoying, and I had some mild pain, but they were nice enough to send me along with a prescription for some oxycontin.  Only 6 pills, not enough to get hooked on, and they stressed that Tylenol would work just as well.  I split the difference but using the Tylenol during the day and the narcotic at night to help me sleep as Friday would be a big day. The dressing also meant no showers until it could be fully removed, which meant Sunday.  Ugh.  

We got to "sleep in" as the first meeting wasn't until 9:15, which took a little bit of the stress off that morning.  The first meeting showed immediately why the port is such a nice thing. First off, they took off the dressing and the stress on my neck was instantly better, and then to get the bloodwork they were able to instantly access the port.  So much easier than trying to ball up a fist and getting another needle stuck in you!  

We then sat down with our NP who was going to be the quarterback of this process.  If I could stop and tell you one thing right here, it's ask questions.  These are medical professionals, and there is no question that is out of bounds.  Since last Wednesday I had had a couple of things pop in my head that I wanted some clarification on, and she was able to answer them clearly.  We discussed all the potential side effects, and once again it was pointed out that they are in the realism business, not the false hope business.  With that said, they were again very optimistic about where things stood with me.  She noted the only blood marker that was above normal was the one they expected, the marker indicating a rectal tumor.  This was a good thing and meant we were in a good place. 

Next up was the chemo.  The process is multi-layered.  My process is one where a couple of drugs are put in at the hospital, in the chair.  Once those are done, they then set me up with the slow drip pump that I go home with.  This week only required a couple of hours at the hospital, but they are going to add another one in the next round that will take longer.  As it was explained to me, the new drug is only meant to try to make sure I have bowel function once the surgery is done.  If I don't take to the medicine or the side effects are too severe, we'll sacrifice it in lieu of the drugs to kill the cancer.  

So, the two hours passed by pretty quickly.  We were really lucky in that we managed to get a room to ourselves.  While the drugs were going in, my doctor came by to talk.  He apologized for not seeing me sooner but explained he had a procedure that took longer and it held him up.  After explaining to him that I understood I was not his only patient, he sheepishly said that he still felt bad that he couldn't be there at the beginning of my first chemo.  

Man, I like this guy. 

After talking over my nausea meds, he also wrote me up a script for a nerve medicine.  Basically, he's concerned that while this is ongoing, I'll have trouble sitting for a long period of time, and this new RX should help numb the nerves in that area, allowing me to function a little better.  He then said good-bye by looking over my blood work, remarking "You wouldn't know you have cancer by your blood work.  Everything looks so good, I really think we're going to get this thing!"  

Not long after he left, The alarms rang and it was time for the pump to be installed.  Five minutes later, I'm walking outside with my new accessory.  We're calling it Al's Ass-tchel.  

I was shocked at how relatively good I felt.  The only annoying thing was I had to pee. A lot.  I wasn't until the third time that I realized that they had used a ton of saline to put in with the medicine, and well, all that salt water has to go somewhere.  Luckily we didn't have to worry about grabbing lunch because they actually serve you sandwiches on the floor.  The nurses on the floor were so bright and cheerful, friendly, just the attitude you want for people getting treatment.  

And yes, I represented the Hurricanes in Boston.  They won that night, thank you very much. 

Lesson 1 learned: I can drive back and forth for treatment from here on out, or at least I'll try to.  $7 for parking as opposed to $30 for two rideshares is very appealing. 

We got back to the house to a couple of packages waiting for us.  One, a great looking recipe book that one of our friends sent on.  It'll be good to plan for future treatment weekends.  The other...an amazon box which was a surprise cause we usually don't have stuff sent to our apartment.  Inside? 

The note inside "We heard you had a port installed, so you need a ship for it.  And when you have a ship, you need a captain's hat."  

Did I mention I have good friends?  The lego is in the box still, saving it for a weekend where I don't have anything to distract me.  

The rest of the weekend was about the pump.  I had to carry the damn thing for 46 hours, which mean until 12:30 today (Sunday) that thing was literally attached to my hip.  By Friday evening I wasn't feeling wonderful.  Not nauseous really just a little worn out.  We ordered some Japanese in, as steamed chicken dumplings and tempura fried sweet potato sushi rolls sounded good.  I ate all the food, watched the Canes beat Columbus, and then went to bed to finish watching Boston beat NY in game 1.  Insomnia to a certain extent bit me on Friday as I was attuned to just about every new feeling, and was also fearful of pulling the tubing out of my chemo pump.  

I did ultimately get a decent amount of sleep on Friday night, and Saturday passed mostly in a haze.  I didn't eat a lot, some peanut butter filled pretzels, cheese toast, chicken strips, and had some wonderful chicken pho for dinner. We even got out and walked around the local Wegman's just so I could get up and out.  Kathleen was able to get out for a swim which helped her out, but for the most part by the end of the day I was done.  I decided I needed to sleep, so I took another painkiller, and by 10 PM I was out like a light. 

I slept 10 hours, and woke without any pain, and almost restless.  I assured Kat that I was good for her to go to work, and when the time came I drove over to BIDMC to have the pump removed.  Again, the nurse was friendly, said everything looked good, and also gave me a sticker to where I was able to park there for free!  So hey, as long as I can drive over, the transport should at least not be as expensive as we thought. 

Overall, for a first weekend it couldn't have gone much better.  There was some unexpected shoulder numbness, the back of my throat didn't like cold liquids for a period of time, I had a tooth that decided to bother me yesterday, and ultimately laying down for so long messed me up.  After having such a long night of sleep, I've been battling some restlessness today, but I blame that more on the heavy night's sleep and two of my teams having some hellacious games today.  I also feel a ton better as I got a nice 30 minute shower at 4:30, my first shower since 7 AM Thursday morning.  

We'll see how it goes from here.  I've been warned that sometimes side effects will hit a few days after, and some people end up being really tired for a day or two after the end of the treatment.  The plan right now is to go into work like normal, as the job does not require a lot of physical exertion.  They are of course understanding if I need time, but to be able to just get back to a routine is something I'm looking forward to.  Hell, this week will be my first normal one in the past three, and in a weird way I'm eager to just have a straight 40-hour week. 

So, again, let me take some time to say "Thank You."  The positive messages that have been given to me as I go through this have been awesome.  To have so many people care about you, to take time to reach out, it means the world to me.  Every bit of positive force will help. 

I'm also going to take some time to do something I didn't want to do.  Adam Pohl, one of my wonderful friends who was in my wedding and is a fraternity brother, started a Go Fund Me for me.  I told him it wasn't necessary, as costs/etc weren't something we weren't going to worry about now, but so many people wanted to find some way that they could help, and for them it feels good that even if they can't be there, they can add some money to this fund.  

So, I share this not because I'm asking you to contribute.  I share this because I know a lot of you want to help and you just don't know how.  Adam has given you an outlet.  There is no minimum, and if you aren't set at a point in your life to where you can, don't worry!  I've been there!  There are so many people out there asking and deserving of help that I understand if funds are tight.  I, of course, thank each and every one of you who have contributed so far.  It means the world to me that you just want to help.  Even if you can't contribute, if you want to share the link with someone who does, it would be wonderful. 

Here's the link: https://www.gofundme.com/66g9ulc

Thank you so much for all of the positive energy you all have been providing.  Keep it up, and direct some over to my better half as well.  On top of taking care of a cancer patient, she's still focusing on Nursing school and working part time.  She's been remarkable in how she's handled it, as well as keeping as much off my plate as possible.  She's been an angel in my corner, and I don't know where I'd be without her.  So while you think of me...think of her, too.  

Onward to the next round!

The Next Steps and a Huge Thank You

First and foremost, if you clicked on my post and said, "Wait, Al has cancer?"  I completely understand.  Everyone checks their social media accounts at different times, and Facebook has been especially fluky lately at just making posts disappear.  So, if you want to catch up, you can here.  I detail the discovery, diagnosis, and outline of the plan as it was explained to me on Wednesday.

Trying to keep everyone in the loop is going to be problematic at best if I took time to text everyone.  Trust me, this is a good problem to have and I'll get more into the gratitude I've felt in a little bit, but it's fair to say that in terms of overall updates your best bet will be here.  In the spirit of keeping you all in the loop, here's my updated schedule.

I got the call yesterday (Friday) that my appointments for the first round are set.  First off, in order to make delivery of the medicine easier, I'm going to get a port installed in my chest.  This is going to require an outpatient procedure, and for the next 6 months at least this bad boy is going to sit there so that the team has easy access to deliver medicine, as well as easily take blood to check for markers, do genetic testing, and put me one step closer to turning into a bionic human.  Any sort of airport check ins will be fun, as well, because when you have a device implanted in your body, you're likely going to raise some eyes at a screening.

If the situation were really urgent, they could take me from surgery immediately over to get the medicine delivered, but they prefer to give the patient a day to recover prior to starting the chemo.  Thus, at 9:15 Friday I'll return to BIMC, meet with the team of oncologists, make sure everything is good to go, then at 11 AM I'll sit down for the first treatment.  The medicine does not all come in at once, it actually will take about 46 hours for full delivery, but I'll be at the clinic for about 5 hours Friday.  I'll leave with a pump that I get to take home with me for the weekend, and then once it's delivered I'll head back to BIMC to get it properly disconnected.  The Cancer Center said they usually try to get an in-home nurse assigned but insurance can be spotty about approval, and since I live in the city and only have to do it every other weekend, I figured I'll save them the trouble of asking.

If all goes well, then we repeat the chemo process every other Friday.  The really good news is that the top side effects of the main chemo is numbness to cold (like, to the point where I feel like I have no hand), tiredness, and increase chance of infection.  Mostly, the first two side effects dissipate after the medicine is delivered, but the increased risk of infection is something I'll have to deal with from this point forward.  On the weekends I have the chemo, that pump will have to come along with me if I were to go anywhere.  Supposedly the side effects aren't bad enough to where even though I'll have that pump, I won't be overly limited in what I can do.  We'll see.

After the first treatment, assuming it takes as he expects, they'll add another medicine to the cocktail.  Basically, it's a cherry on top that's not necessary, but if I take well to it it'll help.  If I don't, then they can remove it without it affecting the course of action.  The potential side effected added to this?

Let's just say that the feeling I had before the colonoscopy and MRI where I had to clean things out would be with me again.  If that is severe, they'll stop using that medicine, but if it's occasional, we'll keep going so we can shrink this damn thing as best we can.

THIS PART IS IMPORTANT.  REPEAT.  THIS PART IS IMPORTANT.  DO NOT SKIM PAST THIS IF YOU WANT TO VISIT ME. 

The oncologist did not really get that serious about a lot of things.  The one thing he did make sure to emphasize: the flu shot.  Despite the medicine, he told me I have to get the flu shot to help inoculate myself against contracting it, and that goes for anyone who thinks you might even possibly visit, or if you will spend a significant time around me.  Please get it, as I plan on getting mine today.  Most places you work with offer it for free at this point.  My wife is going to probably be enforcing this even harder than I will, so...get the shot!

OK, back to the normal blog.

That's as much info as I have for you now in terms of treatment and where things stand.  I continue to be happy with the team over at BIMC as a potential miscommunication was handled great on Friday. There really seems to be an attitude of making sure I'm not just a number at this clinic.  I'm eternally grateful for this.

Speaking of grateful...

I wanted to take some time to give one big "Thank you" to all of you.  The reason I put the first message out in the blog was that I know I'm ridiculously lucky about having a lot of people who care about me and are concerned about what's happening.  What I did not expect was just the sheer outpouring of love and affection that hit as soon as I hit "post" for that entry.  The comments just kept coming on Facebook, enough to where I missed a whole section and had to go back to read them yesterday.

I wanted to respond to each and every one of them, just to say "Thanks" or give some sort of individual message, but I realized if I did that it would take forever.  On top of that, others of you skipped Facebook all together and just reached out to me via text, e-mail, FB messenger, and I appreciated every single second of it.

It's overwhelming to know you've touched that many lives to where news like this makes them feel compelled to not just offer their well-wishes, but genuinely want to do something else to help.  I have so many of you who want to be kept in the loop, that the line reaches around the metaphorical block.  Simply on Wednesday alone, as I delivered the news to the smaller circle of people that I had let in, I spent three hours on the phone before posting this, and I've spent more on it since.  I've had people who were currently dealing with cancer on their own, family members, people I've only met on-line, just untold amount of people reaching out to offer support, advice, love, positivity...you name it.

Keep it coming, is the best thing I can say.  I may not take advantage of what you are offering because, by nature, I'm a private person, but I know that when you are offering it's coming from a true desire to want to help.  One friend even apologized for offering unsolicited advice, which I hated they had to do because I know the place they are coming from.  Most of you are scattered all throughout the country: the result of living in three areas, going to a university that sends its alumni out into the world, and the social media age where people can connect like never before.  You hear this news and because you're my friend, you want to help in some way.  I've been there.

Please understand if I don't take you up on your offer, or use the resources you offer, the gesture is still appreciated.  This whole process is overwhelming to the nth degree, and in these first couple of weeks I've tried to narrow my focus to understanding what I'm facing, and to get the treatment going. Once the chemo starts, the pace will slow down dramatically.  To some extent, it hasn't fully sunk in that I even have this.  Maybe that's a good thing that it helps the optimism, and it helps me avoid thinking about the places where things could go wrong.  I have no doubt there will be difficult days ahead, but with the love and support you've given...you have no idea how much of a help that will be to just continue..normalcy.

I mentioned this to a few of you, and I think I mentioned it Wednesday night: don't be afraid to reach out to me.  If you have my number and you want to know what's going on, send a text.  If you don't and want it, send me a FB message and I'll send it along, or if you want to just use FB messenger, do so.  As this goes on, with a treatment only every other weekend and some sense of routine about it, there probably won't be much out there for me to post on here.  It doesn't mean anything is wrong, and it may not mean you missed anything I posted.  By all means, reach out to me.  The sheer number of people who want to know what's going on simply means I can't get to everyone, and at some point it's going to be easier for me to just let you reach out.

So thank you, one and all for the support so far and the support that's about to come.  It means so much.  Together, we will #MAAGA