Alright… I’m back. I said I would update in the next couple of days… but in the end it was 7. My daughter would tell me that is “way more than a couple”… “way more than a few”… “and definitely closer to several”… but hey, what can I say. Last week I left everyone hanging on how my first round of chemo went. So I suppose that’s where I’ll pick up and fill y’all in.

As I mentioned in the long winded, overly descriptive update I posted last week… We chose to start my chemo at the Providence St. Vincent Clinic. At this point, both my oncologist and my integrative care doctor are located at that location and so far, we really couldn’t be happier. Everyone from the front counter staff to the scheduling department are great. The doctors themselves have been very quick to respond to any questions we have… and though it’s hard to explain… Overall, it’s just a more relaxed, calm atmosphere.

My first infusion was February 5th. Which happened to be the day after my birthday. Nothin’ like starting off my 44th year with a nice, big ol’ blast of toxic drugs designed to kill living cells… right? I’m not usually a big fan of birthdays to begin with. Mostly cause I just don’t like people making a fuss over me… or feeling some obligation to send me cards, gifts or birthday wishes. But in this instance… all the birthday wishes were a nice bonus as I was mentally preparing for round 1 of this six month hill climb up “Chemo Mountain”.

So it was decided that the chemotherapy I will be receiving is commonly referred to as “FOLFOX”. It’s kind of the “go to” chemo for most colon and bowel cancers… and because appendix cancer most closely resembles those types of cancers, it’s the most obvious choice for me. As I’ve mentioned so many times before… there are virtually no “studies” or “trials” on appendix cancer specific treatments. Most of the information known is extrapolated from the effective treatment of other (more popular) GI cancers. We do however, know that it is effective against appendix cancer. And we also know that my specific type of high grade, fast growing, poorly differentiated signet ring cell cancer tends to respond very well to it.

It’s really the “poorly differentiated” part that helps it to respond so well. I tend to think of it in terms of human social interaction. My “poorly differentiated” cancer likes to party with everyone… he’s hanging out at all the bars… going to all the social events… stopping at the park to party with the homeless… then swinging by the high class places to rub elbows with the society folks. He’ll end the night by inviting everyone back to his place for a long nightcap. When the chemo comes sauntering up to him… he’s like “Yo… whatup!!! Heck yeah I’ll party with you… come on over and hang out for a bit.” Before he knows what hit him… the chemo gets in and does it’s job. On the opposite end.. a “well differentiated”, slower growing cancer tends to be a bit more hesitant about the parties it attends… Doesn’t like to just let anyone come over and hang out. So sometimes the chemo has a tougher time tricking it’s way in and getting it’s job done. I suppose it would be nice to say I was glad I had the “poorly differentiated” variety… but the truth is… it kind of sucks either way… lol. Had I been diagnosed with a slower growing cancer… I may not have found it in time… or I could be saying… good thing I had the slow growing one. There’s really no good answer… they all suck. Sorry for the long description… just offering a little background.

Anyway… I checked in to the infusion center on Tuesday morning in a pretty nervous frame of mind… cause I just didn’t know what to expect or how my body would respond. As I mentioned… Everyone was so nice… it really made it easy to relax. After taking my initial vitals as usual… We got to go in and find an infusion chair. The room is pretty large and quite comfortable. The chairs are pretty large and quite comfortable. My specific nurse came over quickly after we arrived and started running me through the process. She was so nice and as much as I like to complain… I really have nothing to complain about.

First… she accessed my port. Which really is pretty cool. After cleaning everything meticulously she crammed the little plug in there and I was good to go. Next she takes a bunch of blood samples to send out and make sure everything looks normal before they start injecting me with the poison. We waited about a half hour and she came back to say everything looked normal and were going to proceed. Then she plugged in the bag of Cancer Killer (I believe this was the Oxaliplatin combined with some Folinic Acid) and away we went. That first infusion goes for about an hour and a half and really was pretty uneventful. I cracked open my kindle while my wife worked on some work emails. There’s multiple food and drink available if you’re hungry or thirsty… even warm blankets if you’re cold. So it’s not torturous or unpleasant during the infusion itself. I enjoyed a nice cup of coffee and had my bottle of water filled up from the morning… So I did have to use the restroom a couple of times. No big deal… just wander on over with my rolling IV rack and fill my coffee up on my way back by. So far so good.

About half way through I went to take a drink of my nice, ice cold water… and whoa… This does not feel good. It’s hard to explain but as the water goes past my mouth and down the esophagus an odd feeling came about. Like pins and needles deep down the throat… and it almost felt as if my throat closed up around the water… Not a big deal like I was choking or anything… but unpleasant for sure. I had heard “cold sensitivity” was a common side effect… I just had no idea what to expect. So needless to say… rule #1 for me… No cold stuff down the throat… lol. I dumped the water and refilled with luke warm water… and all was good. (Well… not good… I hate drinking warm water to be honest… but I can deal) Other than that though… there really wasn’t anything specific I could point my finger at. I’d say I felt “a little off”… but it wasn’t like I was throwing up… or frigidly cold… or dizzy or anything.

Once the initial infusion of the Oxaliplatin was finished. My lovely nurse came over and removed the bag… Then proceeded to inject me with a giant needle full of the Fluorouracil. I then was given a nice tutorial on my “take home pump” which she taped up to my port, then handed me my nice little purse that I would get to carry around with me for the next two days and smiled while she sent me on my way. I left that cold afternoon feeling pretty good. Again… I would describe it at the time as “feeling a bit off”.. but nothing too bad. I could still drive… I went for a walk that afternoon… and I ate and drank (warm liquids) normally.

Over the next two days (the slow drip infusion lasts 46 hours for me), I switched the pump to my own little ‘Tumi’ bag cause I liked the strap better… and it was more functional. I could fit my medication and my sunglasses in there… along with any other personal items I needed for the day. It took about a day for me to fully realize how amazing carrying a purse really is. Why is there a gender bias against purses? Seriously… Call it a “european carry-all”… call it a “m’urse”… I don’t care… It’s damn handy. Now in my case… the tube coming out of my purse into my chest was kind of a P.I.T.A…. but not too bad. I hung my purse on my bedside lamp at night… and just made sure not to roll around too much while sleeping. I wore the purse in the car… at work… at home during dinner… everywhere.

The cold sensitivity on the other hand was real. My hands, face and toes were all very susceptible to the cold. And seeing as how we had a bit of a cold snap here in Portland, it wasn’t pleasant. If my hands or face was exposed to the cold too much… it really just felt like the “pins and needles” you get after your arm or foot falls asleep. It’s not excruciating… but not comfortable by any means. So I took to wearing gloves, a stocking cap and a gator for my face to keep warm.

I didn’t really have much nausea per se… It was more just an uncomfortable feeling in the stomach that would come and go… lol. I laugh… because I suppose that would be described as “nausea”. But it wasn’t like I was feeling like throwing up at all… I just didn’t feel great. Most of the time it was nothing some water (warm water) and saltine crackers couldn’t take away. My integrative doctor likened it to “morning sickness”. Now I wouldn’t know anything about that… but this just felt like an “oogy” feeling that would come on every once in a while throughout the day. I took nausea medication in the morning but I had three other medications for nausea and I didn’t use any of the others.

By Thursday I was definitely more tired… not sleepy tired… but fatigued I suppose. I still went on multiple one mile walks… but I was pretty exhausted by the end of the days. I got to go in and have the pump removed on Thursday afternoon which was a very quick appointment… 20 minutes or so… and other than the hair on my chest being ripped out from the bandage removal… it all went seamlessly. (Note to self: Shave chest around port.) And I must say… as much as I grew to love my purse… I was very happy not to have to be intravenously connected to it any longer.

Friday and Saturday were definitely the most exhausting… I felt okay on Friday… but as the day wore on I just felt very tired… and not quite right. I went in for acupuncture (which I can discuss in further detail in another post… lol)… and went to bed very early. And Saturday was worse… more so than any other day… I just felt ‘out of it’. I was tired… run down… almost like I wasn’t thinking straight. Don’t get me wrong… I wasn’t in a “panic go to the hospital” frame of mind… but it just felt wrong. I really hung back and took it easy on Saturday. By Sunday… things still weren’t great… but I was able to get out… go for a walk… went to my friends daughters birthday. I just wasn’t the life of the party. I was the creepy guy wearing a stocking cap and gloves with a gator over his face, not wanting to get too close to anyone. I’m sure i was a big hit with all the toddler parents… lol.

Slowly over the following week… I really just started feeling better and better each day. By Thursday I really was “mostly” back to normal. Or as normal as I am normally… if that makes sense. I wasn’t sure if I was “thinking” that my fingertips were “tingly” or if they really were… but either way, by Friday everything seemed back to normal. I felt great this weekend and I’m ready for round 2. The way I see it… if I can get back to a relatively normal feeling before the next round begins… I’m doing pretty well.

So that pretty much sums up round 1. Round 1 of 12… I’m not sure if they planned it to be the same amount of rounds as a boxing match… but that’s sure what it feels like I’m heading in to… lol. My plan is to just take it day by day… round by round… cycle by cycle and hope I make it to the end. My oncologist has told me that she’d really like me to get to 8 rounds… if things aren’t great as we move along… I could stop at 8. But I’m definitely not banking on that… I want the 12. (Well… “want” may not be the right term… but you get the idea). Round 2 starts tomorrow… and I feel much better knowing what I’m heading in to. So we’ll see… I’m sure it will get worse as I move through… but I think I’m ready for it… or at least as ready as anyone can be to have cell killing juice pumped into their body for 48 hours… lol.

Stay tuned and thanks for reading. Don’t hesitate to reach out if you have any questions… I’m an open book as far as all this goes.