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!