*Sigh… Dang it… I did it again. I waited two months before I got back in here and updated things. It’s really getting inexcusable that I let this go so long. I mean… nobody is going to yell at me or get angry. C’mon… Who yells at the “cancer guy” about not updating his blog. But you should! I’m terrible and I’ll do my best to improve. The truth is… I always have good intentions about sitting down and typing this out. But you know what they say about the “best laid plans of mice and men”… And mine are “often” more likely to “go awry” than others. But here it goes… my whimsical little blog will become one post longer.

Instead of going round by round… I’m going to kind of combine the last 4 infusions into topics. But be warned… while I’m doing this to make the post a bit more brief, we all know how “wordy” I can get. I’ll most likely take up more of your time than I planned. So… sorry in advance.

OVERALL (Super Short Version)- Each of the last 4 rounds (2,3,4 and 5) have all been relatively similar. Which is actually a really good thing. I quickly found out that predictability is quite nice when it comes to this whole “flooding poison through your body” thing. The major difference was that everything gets a bit more amplified. The cold sensitivity increases… the nausea elevates and I was a bit more exhausted each time overall. To recap about how each round works (without restating everything) I head in every other Tuesday for my infusions. The infusion itself lasts about an hour and a half… but I’m at the hospital for around 4 hours total (including accessing my port… blood draws… doctor appointments… etc) I leave the hospital with a slow drip pump that continues my infusion for 46 hours. I head back in on Thursday to have it removed and then ride the recovery wave for the next 12 days. I’ve had some bumps (read below for the “speed bump version”)… and probably will have more… but I’m still moving forward.

THE DOWN DAYS- On all of the first 5 rounds of chemo, it’s been the Friday, Saturday and Sunday after the infusion that are definitely the “down” days. I’ve since found out there are some steroids mixed in with my infusions. Along with the prescription I’m taking… Dexamethasone pills (some kind of steroid mixed with nausea meds) during the infusion days which helps to make me feel “okay” on Tuesday, Wednesday and Thursday. But that Friday comes and I feel (and look) like a hobo who got trapped in a locked sauna for 3 days with no sleep. I’m not totally sure why (…might have something to do with the three days worth of toxins being pumped through me)… but my face turns beet red, I’m exhausted (though I’ve slept 10 hours)… I tend to struggle with shaving (cause I just don’t feel like it…lol) and I’m wearing a stocking cap, gloves and a down coat in 70 degree weather (cause I’m just damned cold!). So over those next few days I tend to “zombie” around the house napping randomly, and looking generally miserable. Food doesn’t taste right, warm drinks are about all I can handle and I feel like I’m coming down from a week long drug induced Grateful Dead concert tour. Not that I know what that feels like… lol… but I can imagine.

NAUSEA… (Blech)- I mentioned last time that the I didn’t experience much nausea per se. I believe I called it an “uncomfortable feeling in the stomach”. Well… screw that… I’m calling it nausea now… lol. I’ve yet to throw up… but it’s just that feeling that you could vomit if the right trigger occurred. So I try to eat regularly, do some activity and beginning on round 4, I began taking some of the three different nausea medications that are prescribed to me. It kind of makes me laugh that I have so many options for which I can curb my nausea with. I’m not totally sure why I waited so long. I think I felt like I was gaining some sort of “pride” in the fact that I was handling this whole thing without medication. But there was a point on Sunday during round 4 that I was feeling particularly bad. My wife looked at me and said “What are you trying to prove? And who are you trying to prove it to? You don’t need to be a hero. Take the pills, that’s what they’re for.” It was a much more eloquent and motivational “Lombardi-like” speech, but that was the gist of it. And she was right. Now I try to stay ahead of it and it’s helped quite a bit. Round 5 nausea was much more under control.

I probably should also mention, as anyone who’s been through something like this would know, that even with the medication… it’s not daffodils and rainbows… lol. I still feel pretty crappy… but the medication makes it so you can at least go through the day without spending all your time thinking about how crappy you feel. Also, I’d like to emphasize how important the regular eating and activity is. Eating is sometimes the last thing you want to do… but finding those few foods that you can stomach… or that taste, at least partially, like real food really helps. I’ve found a new love for tortilla chips and melted cheese for example. I feel like I’m 8 years old… but hey… if it gets you through. Activity also seems counterintuitive when you feel like your body has been tumbling in a frozen drier for 5 days… but it really helps. My wife has to remind me of this repeatedly as I slog around all weekend… but amazingly, a walk through a forest trail (well covered in snow gear btw) helps you feel less tired, less nauseous and overall… just better. Just my ten cents on the subject for anyone who might be going through something similar.

COLD SENSITIVITY (& My Fear of Elsa)- I mentioned it in my last post… but the cold sensitivity is a real deal on this type of chemo. It’s super bizarre and hard to even explain… but it’s quite real, increases with each round and can sneak up on you when you least expect it. Before I started my infusions, I remember reading forums about others going through FOLFOX. They would talk about keeping gloves next to the refrigerator, covering up bare skin when they’d go outside etc. And after my first round, I experienced it… but it was quite manageable. I think I mentioned the “pins and needles” after prolonged exposure to the cold. Well… after my round 2 infusion as my wife and I headed to the car, I realized I had forgotten my face gator at home. This was a particularly cold day in Portland and as I stepped through the hospital door I quickly realized what a big mistake I made. It felt like my throat was going to close up as I took in the cold air. I quickly covered my face with my shirt… but that still left my ears and forehead feeling like I was in a sandstorm. I’m being a bit dramatic probably but it’s no joke. It’s not that your throat actually closes up… but the feeling is a bit like jumping into freezing cold water… Your breath is knocked out of you due to the pins and needles that quickly take over, not only your skin, but the inside of your throat. It’s eerie to say the least and something that I just don’t mess with anymore. I wear gloves and a stocking cap pretty constantly in the first 5-6 days during each cycle. And my face gator is always around my neck to pull up if I get an inkling of a cold breeze. The obvious culprits are easy to avoid… like anything in the refrigerator, or allowing the water to get hot before you wash your hands… but each cycle I get shocked a few times when I’m not wearing gloves and I touch something random like a countertop, a doorknob or even my laptop and that cold “zing” flashes through my fingertips. Lord help me if I get out of bed in the morning and forget to put socks or slippers on first. That painful tingle you feel when your feet have fallen asleep and they start to wake back up again… yeah… that’s what it feels like for the next half hour as I try to warm them back up… lol. Needless to say… Elsa from Frozen makes Kylo Ren look like a Flinstone villain in my opinion. I’d welcome the warmth of that lightsaber anytime over climbing that scary staircase made of ice… yikes!

MY WHITE BLOOD CELLS (Probably Too Much Info… Sorry)- Each time I go in for an infusion, they take 2 blood samples (a comprehensive metabolic panel and a cbc w/ differential) that are reviewed by my Oncologist to ensure that I can proceed with my next round. This is to make sure that the chemo isn’t taking too large a toll on my blood cell counts, my liver function etc. She can adjust dosages, or postpone treatment or any number of changes to the program based on the results she sees every two weeks. Before my second round, my results showed a large decrease in my White Blood Cell counts (specifically my Neutrophils). Not that any of this makes much sense… (I’ve spent way too much time reading about it all… but it’s like studying deep sea biology…and definitely not anything I feel like typing out in my blog) but I know my count needed to be at 1.5 or above for me to proceed with treatment… and I was at 1.6. So while I was able to proceed with round 2… it was an issue my Oncologist said we’d have to keep an eye on. So I reached out to my Integrative Doctor and she got me taking a whole host of other herbal supplements to help with White Blood Cell counts (and Neutrophils specifically). Suddenly my daily “swallow a few pills” routine turned into my daily “swallow an ungodly amount of pills” routine. No kidding… It’s well over 25 individual capsules… including things like B6 complex, glutamine, astragolus, coriolus, fish oil pills, melatonin… I could go on… but you get the idea. So before round 3, my labs came back and my Neutrophil count went up to 1.7… woo hoo!! I was feeling pretty damn awesome. My Oncologist was quick to point out that I should not be surprised if it dips back down. The treatments are cumulative after all and it’s a common side effect with FOLFOX. but there was a possible solution if it did drop.

*Side Note* That solution is called Neulasta. It’s a drug that was designed for breast cancer patients that were going through particularly rigorous chemo treatments. Many had to delay treatment due to low White Blood Cell counts and they were finding that those delays actually negated all the previous treatments that been completed before the delay. So… since science and technology are amazing… a drug was developed that actually prods the bone marrow to release immature white blood cells, temporarily increasing white blood cell counts thereby allowing patients to continue with treatments without delays.

*Back to me* When my Oncologist mentioned this option before my round 3 infusion she also mentioned that if my cell counts were too low, we might have to delay treatment while we get authorization from my insurance company to proceed with Neulasta. (It’s a very expensive drug apparently that needs a separate approval). My amazing wife (once again proving why she’s the brains in the family) stepped up and said “would it be possible to reach out to the insurance company now for some kind of pre-approval, in case it’s needed in any future rounds?” My Doctor said ” Great idea… I’ll ask billing to look into it”. (Seems like a logical thought right? Sometimes you just have to ask…). Low and behold my round 4 labs came back with a Neutrophil count of 1.2… ugh… (so much for the 30 pill a day approach… lol). But my Oncologist said “We got the pre-approval on the Neulasta… we’ll just add that to the program this week and keep moving forward.” Woo Hoo!! No delays yet… Whew. The Neulasta shot is usually a shot that is on a time release for most breast cancer patients. They want it administered a couple days after infusion. But in my case… I’m back in the infusion center on Thursdays to have my pump pulled off, so they scheduled to give me the shot when they pulled the pump off… Very convenient… (if anything regarding chemo could be considered convenient…). I haven’t really experienced any of the side effects that can come with Neulasta (aching bones, general soreness etc.). My blood work for round 5 showed my white blood cell count right back up where it should be (Neutrophils were at 5.5) so it’s worked just like it was supposed to. I did receive the shot again in round 5, but they still monitor my counts closely to also make sure they don’t go too high. So “Yay” Neulasta, and “Boo” on my bone marrow for not being able to produce enough White Blood Cells to keep up with the onslaught of poisons we’re throwing at them. Just kidding… Love you White Blood Cells… Appreciate all you’re doing for me… Keep up the good work! Sorry for the long White Blood Cell update.

(*in a Forest Gump style voice and accent…) “That’s all I have to say about that…”

MOUTH SORES… (Seriously?)- I’ll try to speed things up… but I did warn you this could get wordy… lol. Anyway… As I started round 4… I was slogging along feeling pretty good… (which actually means I just felt predictably crappy… which in chemo terms… is pretty good, if that makes any sense). Then comes Saturday morning. Things started pretty normal… Felt “bleh”, ate regularly, took 45 pills, drank nasty warm water, perpetually napped whenever I stopped moving… etc… ya-know… all the normal stuff… lol. Then around noon or so I started feeling what felt like a canker sore forming on the right side of my tongue. I had read and had been told by my Oncologist that mouth sores are common. And I’ve had canker sores before… so it’s not like this was completely foreign territory. But this sucked… Big time. It formed just in line with my back molars on my right side. So any talking, chewing, or movement of any kind with my tongue resulted in a sharp pain. My wonderful wife immediately went to the store to retrieve multiple different canker sore relief products… and I tried them all. None of them worked all that well. I poured more Kanka, Alum and these weird tab cover things in my mouth than was probably a good idea. You probably could have performed a root canal on me considering how numb every part of my mouth was… (Other than the damn sore btw) and really the best solution was to just close my mouth and not speak, not smile, not laugh. Which, if my writing style is any indication of how often I allow words to flow out of my mouth, you understand this was no easy task. Needles to the say… Round 4- Saturday through the following Thursday sucked eggs… (which I actually had to do, cause it was the only way to get the eggs down without a tremendous amount of pain… lol). So to wrap up the mouth sore section… I now rinse twice daily with a salt water/ baking soda mix, I brush after every meal… and I’ve got a prescription for something my Oncologist calls “Magic Mouthwash”… (which is some concoction of Lidocaine and other helpful products that I don’t know what they are…) that apparently allows me a window to eat, smile… (and talk) without pain for a short amount of time. I do not ever want that problem to return… And I’m happy to report that Round 5 went through free of mouth sores… Lets keep our fingers crossed that the streak continues.

ROUND 6- HALF WAY… ALMOST- Today, as I started typing this update, I was sitting in the infusion center receiving Round 6. Crazy to think this is the beginning of the half way point… but it is. However, it wouldn’t be a round of chemo without some sort of hiccup to add a bit of stress to the process. My White Blood Cells were great… so no problems there. This time though, it was my liver enzymes were way high… (my ALT and AST numbers if you look at the Metabolic Panel lab breakdown… and which I haven’t had a whole lot of time to research yet). They had been climbing over the last 5 cycles… but this time they were almost 5 times higher than normal. As I understand things right now… and putting it very simply… these enzymes get over produced when my liver is distressed. This is apparently pretty common… and it didn’t stop my infusion… but my Oncologist did reduce the amount of some of the FOLFOX drugs I received by 25%. I’m not freaking out or anything… but it definitely bummed me out a bit to have to receive a reduced amount. I want the “Full Monty”… I want as much poison as possible injected into that beautiful little port in my chest, and I want that poison to seek out and kill each and every little cancer bastard that has the audacity to try living inside me. So yeah… I was bummed today cause apparently my damn liver is complaining that I’m putting him through a lot… and he’s not handling the load. “C’mon buddy…”(I’m speaking to my liver by the way…) “Step it up! Put your big boy pants on and take it like the liver I know you can be!” I’m kidding of course… (kind of)… I get that this is part of the road and every body (not everybody… but every body… lol) is different… and this is just part of the process. My Oncologist assured me my liver wasn’t “failing” and that this is all still very reversible. So no worries… I’m fine… and I still am very close to half way done with this 6 month, 12 cycle slog.

WRAP UP (Finally)- If you’ve read this far… thanks for putting up with my meandering, rhetorical attempt at getting this all down in print. I say it time and again… but I’ll try to get back here more to allow for shorter posts. I know it would help everyone (including myself) in time management… lol. And I’d be out of line if I didn’t offer up a heaping pile of love and thanks to everyone who connects with me and my wife with words of support and kindness. It really does mean so much to both of us. We’re both holding up great during this whole thing and all of your support is a huge reason for that. That includes each and everyone who actually spends the time to read these long winded posts. I get some major fulfillment out of knowing people are taking the time and energy to keep up… so thank you, thank you thank you! I’ll end by saying that I’m honestly more than happy to answer any questions anyone has about any of this process. (Well… I say that knowing that some of my friends and family could come up with some pretty odd and most likely inappropriate questions I’m sure… but you get the idea.) This whole thing is a pretty epic quest and I’d never be able to put in words everything we’ve learned so far. Heck… We’ve even got advice about the advice we’ve been given. So please, if there is anything at all that anyone is curious about… don’t hesitate to reach out. Again… Thanks and love to you all for reading and I’ll look forward to our next chat.