Sept 11th to 30th - Round 1, FIGHT! (Part 1)

Round 1, FIGHT!

In the previous post, I explained what the actual prescription for my chemo looked like. If you have not read that (and you should, because context) here is a quick review: 

• 3 x 3 week-long courses of BEP Chemotherapy was prescribed (9 total weeks)
• A full course consists of one week (Monday - Friday, 6 hrs each) and two, one day weeks (Tuesdays, 2 hrs each)

I used the previous post to more generally try to explain what my treatment looks like. In this post, I wanted to explain more about the impact the treatment had during the first course. 

Week 1 (Monday - Friday, 6/7 hrs a day)

Medical video clip of daily chemo treatment

Originally, I thought this week would be absolutely brutal. Not just because of the daily grind of treatment but more so because getting any drug via IV for 5 straight days is bound to take its toll. In my case, I would be receiving 2 every day. 

It was an interesting feeling, not unlike the first day of school, to be loading up my backpack to head out at 8 AM on a Monday but there I was, doing just that. The morning of September 11th, I packed up my bag with -- what would become my daily care kit -- my Nalgene water bottle, laptop, Nintendo Switch and headphones. Since there was concern about just how well I would respond to treatment, my mom drove me to the facility for the first few days of treatment (okay.. So it was a lot like the first day of school). For subsequent treatments, I drove myself. 

Specialized port needle. Might not look like it.. but it does make things easier.

Once I checked in, I was weighed, my blood pressure taken and then temperature and pulse recorded as well (This would be an everyday part of the check-in process). Once the vitals were completed, they hooked up the port via a specialized needle and "flush" the port with saline to do a "quick" blood draw of paltry 7 vials of blood for the first of 9 weekly blood tests.

The blood tests are to check that your body is responding to the treatment without totally falling apart (e.g. liver/kidney function, white cell count, red cell count) and establish a baseline for treatment that week. This completed, I walked back to the chemo area to select an open lazy-boy recliner chair for treatment (there are 18 total chairs, of varying levels of occupation depending on the day). 

Treatment basically consists of sitting in that chair for however long is needed, in my case 6 - 7 hours a day this week. 

In all honesty, I spend most of my time during treatments playing the Nintendo Switch I was graciously gifted by my friends especially for chemo (again, best gift ever). You don't -- or at least I didn't -- "feel" the treatment really. I would equate it to the same feeling you get when you take Robitussin or a similar medication in that it kind of gives you "medicine head" but you don't "feel" much. 

The nurses are especially attentive during the first week (again, can't say enough about the staff I've worked with so far) since allergic reactions can be common, especially to the Bleomycin drug. Generally speaking, however, I seemed to react to the treatment well and spent almost the whole week either a) Playing the Nintendo Switch; b) blogging for you savages. 

For this first week, I tended to crash fairly hard coming out of treatment. It was explained early on that and subsequently hammered into your skull that, "the fatigue will be cumulative". That is certainly accurate as I usually took a nap when I got home, woke up and had lunch, then went back to bed by 8:30 or 9:00 PM. Rinse and repeat for 5 days. 

The most common side effect for me was/is definitely Fatigue. Since the start of treatment, there has been this lingering feeling of tiredness both physical and psychological. If you've pulled a succession of all-nighters in the past, I would say that's what it feels like. It's workable but certainly sub-optimal. Concentration can also become an issue from the fatigue as well. 

Not pictured: Chemotherapy, Success

I didn't really have any expectations for side effects coming into treatment other than bracing myself for the worst possible (nausea, loss of appetite, aches and pains, brain tooth and other potential side effects). I think that was helpful for me. Not having expectations made me more aware of my body and made sure I didn't "psyche" myself out prior to treatment. Other than fatigue, there weren't many side effects week 1.

Next post, I'll talk about some of the fun side-effects that week 2 brought.

September 9th - My Cancer Moment

I wrote in my previous post that many of these are exhausting to write. To be honest, I knew this was coming up chronologically, I was dreading writing it and I've allowed it to delay a lot of further writing as a result. It's not so much the vulnerability I know I'll have to show to post this, it's more so the fact I'll have to live through the emotions again in order to do this justice. That's why these end up being exhausting. So, sitting in my chemo chair, hooked up to an IV for the next 5 hours, I finally decided to half-sack up and write it. I hope you can understand that it represents a brief moment of collapse in what has otherwise been a strengthening experience.

I was told by both my doctors as well as other cancer survivors that everyone seems to have a "Cancer Moment" after diagnosis. The general definition of that moment seems to be the realization that a) You have cancer; b) It's very serious; c) Treatment will not be fun; d) Hardest of all that there is a possibility, however remote, that you won't survive the experience. 

It seems to vary from patient to patient as to when that moment occurs. Some get hit their first day of chemotherapy, confronted with the reality of the IV and seeing other patients at various stages of the fight. Others seem to let the moment wash over them after the port or PICC install or when their doctor shows them the CT Scan of the actual tumor(s). For me it was a little different.

For me it was my 5 year old nephew yelling, "I love you, Uncle Mike!". I had just fixed his Transformer toy before my brother, his wife and my niece pulled away in their Honda Pilot. It was heart-warming for a moment until reality kicked in and my anxiety addled brain played a mean trick on me. 

You have cancer. What if he grows up without you? He's still so young he could forget you.

As I walked back inside, I could feel an emotional tidal wave coming. Like a good Irishman, I tried to push back the impending disaster; to stuff it down and deal with it when there was time to do so (which means never). I flopped down on the couch and tried to distract myself with Netflix and a Jameson. My brain decided to taunt me again.

You have cancer. What if it spread to your liver and you can't drink Jameson ever again? 

That certainly wouldn't be the worst thing in the world, I suppose. But I was starting to get the sense there was something I was dancing around to avoid. Above the TV in my parent's family room is a portrait of me and my three siblings as kids. I was maybe 6 or 7? Close to my nephews age. 

You have cancer. What if you can't have kids after treatment?

Well, I guess the message was getting more positive. At least whatever anxiety driven bullshit was being concocted in my head had come down from not surviving to surviving but being infertile. That's an improvement, right? 

You have cancer. What have you done with your life? 

Credit: http://www.theawkwardyeti.com

A lot, you fucking asshole brain. Jesus, get it together.

I've had these internal fights before, it's part of living with anxiety. These jabs seemed especially caustic given my current predicament. These were above and beyond the usual internal dialogue about being good enough or smart enough. It crossed into an unknown territory and it was getting frustrating to deal with. I wasn't able to distract myself as I usually would and I started to fixate. 

My mom sat next to me after pouring herself a Jameson and asked how I was doing. My lips twitched sideways and I just shrugged, trying desperately to squint my eyes hard enough to stop whatever waterfall was trying to break past my tear ducts. 

"I don't know...", I finally managed to stammer out.

After a small demonstration of mom-prying, she managed to get past my thin attempts to hide what I was feeling and I opened up. I had to. It was getting physically painful to contain it. 

"I don't know..", I managed to get out again before my lips twitched to the side again and tear managed to sneak down my cheek, "It's just a lot."

By now I had devolved into a full-blown breakdown, tears streaming down my cheeks. It was more frustration than anything else, I knew what was happening with me was serious. But the percentages were great, my prognosis excellent, why is this so difficult? I had already told many people face-to-face and on the phone without much difficulty. Was it seeing my niece and nephew knowing they wouldn't understand? Fear of the isolation? After talking through it with my mom for who knows how long, it finally hit me. 

"I guess, I just haven't said it," I said through a few sobbing breaths, "I've told people but I haven't really said it myself. I have cancer. It's serious and I know it's treatable but I have cancer."

It took me some serious parental comforting and a few more admissions about my current condition to come back from that cliff. Admitting it was hard. Previously, I had told people using couched words and clinical distance to describe what was going on. Like a doctor explaining to a patient, I was a few cold steps removed from the diagnosis itself. 

Simply uttering the words I have cancer brought an odd amount of relief and allowed me to think about it clearly again with the acceptance and determination to come through it. That was also the moment I resolved to blog about the experience. I had a friend who recently passed away from pancreatitis. It had seemed to me he had isolated himself after his diagnosis and his death took many people, both close and distant, by surprise.

Isolation, I decided then, wasn't an option for me. While I was supremely confident in my prognosis, my mental wherewithal and my body's ability to heal, isolation would kill me. Beyond the depressing aspect of isolation, it occurred to me then as it does writing this now, that isolation kills in these situations. Beyond people being inherently social creatures, isolating yourself during difficult situations hides the light at the end of the tunnel. It makes us forget that people love us and there is something to fight for. Whether it's people in close proximity letting you know they care or those more distant expressing their love, you have to let the village in. It can be hard and, at times, overwhelming. It's difficult to know how to respond to everyone without sounding canned and sometimes, people slip through the "Thank you" cracks.  For me, however, I decided it wasn't an option to isolate myself, as tempting as it was as a very private person. The risk was too high.

Mostly, it's people expressing a simple, "You've got this." or "Just wanted you to know I care". Semblances of normalcy are nice too, a game night with friends, going out for dinner, coffee or a smoothie. Helping people to understand what's happening helps me comes to grips with it as well (e.g. understanding through education). All of it helps. All of it is appreciated.

This was a long slog, so here's a cute puppy to cheer you up.

It took a little to write this one. It was harder than the others. Especially since I had to try and choke back tears as I sit here, in public, in my chemo chair, surrounded by people in various diagnoses and stages of treatment (many are much worse than mine).  As I've said before, part of what makes these exhausting is reliving those moments emotionally and mentally so I can explain them better.

My cancer moment is what made me blog about this. It forced me toward the decision to let people in and to allow them to lend me a seemingly endless source of strength when mine inevitably lapses in private moments of weakness. Most importantly though, it helps me remember that when this is over and my life is my own again, things will be better than they were before. It's something I look forward to and focus on every day. 

Now to the start of Chemo…

September 8th - My Chemocal Romance

Want to learn about Chemotherapy?!

Well, you're going to.

I wanted to share some insight on Chemotherapy, specifically the kind of Chemotherapy I'll be receiving: BEP Chemo (or, "Cheems" if you're one of the cool kids). On September 11th -- Yes, that September 11th -- we launched the second vicious salvo against zee tumahs in my fight with cancer. The first salvo was, of course, the Pyrrhic Victory that was the Battle of the Bulge and resulting Radical Orchiectomy.  

The prescription in this fight is for 3 Courses of BEP Cheems over a period of 9 weeks. A course consists of 3 weeks broken up as follows: 

• Week 1: Monday thru Friday - Approx. 6 - 7 hrs/day

• Week 2: Tuesdays Approx. 1.5 hrs

• Week 3: Tuesdays Approx 1.5 hrs

Helpful video on platinum and its uses in modern life.

Now chemo comes in many varieties, if you're some kind of dweeb you can read all about it here but, in my case those 6 - 7 hours are spent sitting in a lazy boy chair hooked up to an IV which drips poison into my system.

Many times, however, chemo is abbreviated into an acronym for the specific drugs that will be used. For my 3 courses of treatment, I will be/have received Bleomycin, Etoposide and, Cisplatin. Speaking of cancers though, before you grammar freaks throw start your pedantic screeching, yes, I am aware that should be BEC Chemo. 

BUT ARE YOU A DOCTOR?!  Why are you like this?!? 

It's BEP because Cisplatin is one of several chemotherapy drugs that is platinum-based. Cisplatin is a generic drug version of Platinol®. There's platinum coursing through my veins. Don't you think that's cooler now? 

As of this writing (I'm a little behind schedule due to, you know, Cancer) I am starting my second course of BEP treatment so I now have a fairly good idea of how this all works. I'll be lumping the courses together in terms of description and trying to call out any specific side effects I experience as individual stories. I'd chronicle the days themselves but that would get repetitive and boring. How many different ways can I tell you that the massage function on my Cheems-Lazy Boy Chair also has a heater? 

“Cisplatin is the Penicillin of Cancer.
http://www.cisplatin.org/”

— Manufacturer of Cisplatin, Probably

As was suggested earlier, my first course started on September 11th. The course of drugs goes like this: 

Week 1 ("Prime" Week): 

Monday, Wednesday, Thursday, Friday:

• Preventative Steroids, Anti-Nausaual (30 - 60 Min)

• IV Fluids/Electrolytes (1.5 Hrs)

• Etoposide (1 Hr)

• Cisplatin (1 Hr)

• IV Fluids/Electrolytes (1.5 Hrs)

Tuesday: 

• Blood Draw (30 min, including waiting on lab results)

• Preventative Steroids, Benedryl, Tylenol (30 - 60 Min)

• Bleomycin (40 Min)

• IV Fluids/Electrolytes (1.5 Hrs)

• Etoposide (1 Hr)

• Cisplatin (1 Hr)

• IV Fluids/Electrolytes (1.5 Hrs)

Week 2, 3 ("Off" Week): 

Tuesday: 

• Blood Draw (30 min, including waiting on lab results)

• Preventative Steroids, Benedryl, Tylenol (30 - 60 Min)

• Bleomycin (40 Min)

All this takes place via the port, which I've talked about previously (were you paying attention!?)  in a lazy boy chair with an IV Tree sitting next to me. The nurses I have worked with here have been fantastic, knowledgeable and very caring. It's difficult to compliment them enough given the job they have to do here.

More like 100% Whole Pain Amiright? How has no one burned Sun Chips to the ground yet?

Primarily, my day is spent doing one of three things: A) Playing the best chemo gift ever, my new Nintendo Switch; B) Blogging for you assholes so you can feel my pain; C) Eating lunch or random snacks I scavenge from the break area, my current favorite is Cheddar Sun Chips which, under normal circumstances I would scoff at.

As brutal as the "Prime" Week schedule sounds, it hasn't been all that bad. Usually, when I get done, I drive myself home take a brief nap, wake up and eat dinner then go back to sleep shortly after to wake up and do it again. 

The "Off" Weeks are very hit or miss in terms of how I feel. It's a little rougher doing the one day a week since the Bleo treatment is so caustic and by then the other drugs are out of my system. Usually, that Tuesday and Wednesday are recovery days for me and then I resume a somewhat normal schedule. 

Next post, I'll tackle the individual drugs and side effects I've experienced to date and feelings. What else would be interesting to hear about on the chemo side? 

You can ask on Twitter or e-mail me.