Wednesday, January 16, 2019

The First Wall is Scaled

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

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

Yeah, not that easy.

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

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

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

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

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

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

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

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

Then the tattoos.

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

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

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

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

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

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

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

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

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

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

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

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

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