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

The Fight Ahead.

I'm sorry to have to grab your attention with a basic post and forcing you to click over here, but I really only wanted to have to type this out once.  Anyone who uses Twitter knows that it can take a while to write out a lot of tweets.  I can promise you, however, it wasn't a gimmick for attention.  

So, a little background first: back in April my job role changed to where I was spending a lot more time sitting and a lot less time moving.  It became more difficult to sit as time progressed, and as most you know I'm not exactly the most active person, nor am I the healthiest eater.  Put those together and I just thought I had a bad case of hemorrhoids.  I was gutting through it, until we took our trip to Texas for SIL's baby shower.  The plane ride was torture, and I finally decided to schedule an appointment with my PCP. 

Modern access to medicine being what it is, I had to wait a month for that appointment.  The hemorrhoids diagnosis was confirmed, but on the exam, she found something that seemed to be a little too deep for just a hemorrhoid, and she couldn't get a good grasp of what it was.  This earned me a colonoscopy, which I had to wait another month for, though to be fair that was because it needed to be when Kathleen had a day off so I had someone reliable to come home with me. Thus, we celebrated Kathleen's 40th birthday with this hanging over our heads. 

Let me tell you something: I get why people hesitate to get colonoscopies, but it's not because of the procedure itself. Three bottles of Magnesium Sulfate within twelve hours and the colon was REALLY cleaned out.  

The actual procedure was painless, thanks to the sedative.  The staff at Beth Israel clearly knows what they are doing, as the process of getting me ready was quick, efficient, and easy.  I had the first IV of my life, and was rolled into the room with two TVs on the wall.  After answering a few questions, the nurse advised me that the sedative was being administered.  The next thing I remember is the physician performing the procedure telling me that a 2.5 cm mass had been found, and that I would be speaking to a colorectal surgeon before I left, but that I was in a good place and should have a lot of hope. 

While waiting for the surgeon my wife also spoke with the physician who performed the colonoscopy, and we were both left with the same impression: a biopsy had to make it official, but he had no doubt that this mass was cancer.  Within a short time, the surgeon was by looking at the photos, telling me that there were additional tests that were needed, but on first impression I was probably looking at chemo, radiation, or both to shrink this mass first, and then surgery due to it's location, then further treatment.  

To say I left the hospital in a daze and not fully realizing what just happened is an understatement.  It wasn't until the weekend, really, that the full scope of weight of what's about to occur in my life started to sink in.  I started to bring people in, let my new supervisor know, and then just laid down for the rest of Wednesday.  On top of all that, it's not like your system instantly recovers after being told it has to expel everything currently residing inside and then being sedated.  Anything consumed the rest of the day quickly exited the way it came in, and I was thankful I had taken a half day on Thursday. 

By the time I sat down at my desk on Thursday, I had an appointment for an MRI of the colon and then a CAT scan of the abdomen for Tuesday (Sept 25).  I also had to go by Beth Israel to get blood draw to examine cancer markers and white cell count.  All of this would help determine the stage the cancer (which at this point still wasn't technically confirmed) was in, and then on Wednesday I would sit down with the oncologist, surgeon, and radiological oncologist to put together the plan of attack.  All three are on the teaching staffs of Harvard Medical, so it's probably fair to say I at least have some confidence in their abilities. 

If there were a day where all of this started to hit home, it was Friday.  That's when the Google searches happened, the learning about stages, survival rates, trying to figure out if it spread, and so forth happened.  It was also on Friday that I got a call from the physician who performed the colonoscopy.  I didn't recognize the number so he left a voicemail, simply saying "our suspicions have been confirmed, so you need to keep those appointments you have set"  

With that, I officially have cancer. 

Friday wasn't all bad.  One of Kathleen's friends had been a Broadway in Boston subscriber and landed a ticket for Hamilton, but she couldn't go.  The ticket was offered to Kat, but she had an early day at her clinical and then had to work a closing shift for her part-time job, so she couldn't go either. She offered the ticket to me, and so at least for Friday night, I got to be distracted with the sounds of the Founding Fathers.  

After a weekend of mostly mulling this over, I was back at Beth Israel on Tuesday for the MRI and CT scan.  The MRI required the bowels to be cleaned.  Again.  This time with a laxative and enema 1-2 punch that I'm pretty sure has my large intestine ready to just pack up and leave.  If that didn't do it, the ion water I drank for the contrast on the CT scan had to have done it.  I'm actually surprised my large intestine is still with me right now, to be honest.  I get a tumor in my rectum and it has to suffer.  

It should be noted I originally had to wait between the MRI and CT scan, just because of when the coordinator could get an appointment.  The tech for the MRI was amazing, and despite being cloistered in a loud metal tube for an hour, the procedure was a lot easier than it could have been.  Once done, she asked if I had a CT appointment, and I mentioned it was set for 6 hours later.  She told me to wait, and about 10 minutes later told me they had room to take me earlier while I was still there.  I still had to wait for an hour while the contrast water worked its way through, but the communication there to work together and make the process easier for me was amazing.  

Thus, we get to today.  I met at Beth Israel with my team.  Yes, I have a team! And then the team wanted to see the tumor for themselves. 

It's at this point where Cartman comes to mind.  

Anyway, after a few uncomfortable minutes, the wonderful team laid it out for me:

• The cancer is Stage 3C rectal cancer
• It has spread into the lymph nodes around the tumor
• The MRI and CT scans did not show evidence that it had spread into the abdomen/liver
• The tumor is 3cm and located low in the rectum
• As had been first mentioned, with the size and location, we will have to do chemo, radiation, then surgery
• Generally, the 5 year rate is about 65%, but for someone with my health/lack of symptoms they pegged it closer to 75-80%.  They stressed how treatable it was, and made it a point of letting me feel optimistic.  

After the initial information, I sat down and discussed more specifics with the oncologist and radiation oncologist, the majority of the time with the oncologist.  The chemo is going to be a lot less invasive than I had feared, and hair loss isn't even one of the symptoms of this particular cocktail.  There are others, the biggest will be an instant numbness when I touch something cold.  The good news is that I'll only have to get treated once every two weeks, and I can schedule a round for the end of a week so the majority of it pumps in during the weekend, minimizing the time I miss at work.  Depending on how I respond to the first round, another drug may be added just to provide an additional blast. 

The plan is to do this for two months, then scan to see where things stand.  If it works like they expect, do it for a another two months.  Then, we'll take another scan.  If still good, then we move to the radiation.  The radiation will be daily for 4-6 weeks.  After that, we will take a two month break to allow the body to heal, and then the surgery happens.  

So, a rough outline would put the radiation around February and it being completed around March, thus the surgery happening around May/June.  The really good news is that if this works out the way they think, once the surgery is done I'm done (aside from the usual check ups, etc).  

Thus, there's a real reason to be optimistic here.  I know once I walked out of Beth Israel today I felt a lot better than I did this time a week ago.  I feel confident in the team over at the Cancer Center, especially after spending an extended time talking to both the Oncologist and Nurse Practitioner who is the main patient contact for the whole program.  First off, I'm not being managed by just an oncologist but one who specializes in colorectal cancer, as does the radiational oncologist.  They explained their process of collaboration and communication inside the hospital, and most important the Oncologist offered to assist me in setting up a second opinion, if I wanted.  "It's your cancer, and any doctor should be willing to do that for their patient."  

The thought is appreciated, but I'm ready to fight. 

I not only have a great team inside the hospital, but one outside.  I've spent the afternoon and early evening bringing family and friends up to speed, and it truly felt like I've been on the phone all day.  It really shows how lucky I am that I've had to spend this much time catching people up, and that I still have to do this to make sure everyone knows where I stand.  

So, if I haven't reached out to you before now and you're hurt in any way I am truly sorry.  I just hope you understand that the past week has been a huge whirlwind, and between getting the process set up with appointments, soaking in the news, and looping in some people, at some point I had to take time to keep from saying the same thing over and over again.  The support I've gotten already has been nothing but outstanding, and what's gotten me so optimistic is that I know I have this great support structure behind me.  

It's part of this support structure that has inspired the video above.  When I informed one of my circles about this, they quickly came up with two hashtags: KACA and MAAGA.  Originally, that was Kick Ass Cancer's Ass, and Make Al's Ass Great Again.  When I reported this to some other friends, the suggestion was to change "Great" to "Glorious."  So, Kick Ass Cancer's Ass (KACA) and Make Al's Ass Glorious Again (MAAGA) will be prominent in my mind during this process.  Of course, once Glorious is invoked, you have to listen to Bobby Roode's entrance. 

Seriously, listen to it.  

GLIORIOUS!

No, I won't give in

I won't give in...

'till I'm Victorious

And I will defend

I will defend...

It's cheesy, it's meant to be an ear worm to bring thousands of fans to their feet, and it's meant as nothing more than to accompany someone as they walk down to the ring before they fight.  Yet, it's perfect for so many reasons.  

If all goes according to plan, I'll be getting the port implanted next week, and the first round of chemo will be at the end of the week.  

No, I won't give in.  I won't give in..till I'm Victorious.  

Game on.