Saturday, July 23, 2016

This Was Not Part Of The Plan

Sometimes the pieces of your life inexplicably explode.

Most pieces land somewhere close around the edges, fairly easy to find and put back in place.

But some pieces are lost forever, leaving a hole for all eternity.

I wasn't terribly anxious about getting my first chemo treatment. After all, it wasn't that long ago that I watched Wonder Woman (My Wife) fight through her treatments, and in general she did fantastic. I used to make the joke that on chemo weeks she would be "useless" for about 4 days. It just knocked her out and the boys and I rarely saw her. But I was wrong. She wasn't useless because the could actually still do many things for herself. Sure she couldn't help with the boys (which practically made her useless to me) but in general she was still functional.

So, in kind of a bad way, I had an idea of what to "expect". I put the word expect in quotes because each cancer is different, each person reacts differently to their cancers and/or treatments, and, quite frankly, I was wrong.

Got the 4-hour chemo treatment. Then about 5:00pm I started feeling a little queasy. Not bad, just kind of uncomfortable. By the time Rachel got home from her Book Club meeting around 10:00pm or so, I was passed out (in bed asleep). No memory of her getting home. Slight memory of some quick conversation while she got ready for bed. Then nothing else.

It was like the walls of my life enclosed me, wrapping me in my own personal hell, all the while attempting to asphyxiate me.

I was going to delete the previous sentence, but I think I like it. It stays.

Anyway, the day after chemo was a living in Hell. Actually, I might have been a zombie in TWD. I would have preferred to be a zombie!

Rachel got me to my daily (the second one by this point) radiation treatment, but after I got done with that (which takes about 15 minutes total), she had amassed a team of doctors and nurses and I was being shuffled off to a room to get fluids.

Um, this was not part of today's plan.

Life with cancer.

Rachel and the boys picked me up four or so hours later and we headed home.

Now know that at no point have I actually vomited. This is all that nausea feeling that is kicking my ass.

I can eat. It all sounds disgusting. And now, the smell, sound (saying the word out loud), and even the word itself, vanilla, makes me queasy. This is painful. Part of the plan was to have vanilla milkshakes through this crap because it's my favorite flavor.

I should've known, this was not going to be part of the plan.

So vanilla is out. Can't do it at all. I hope that is not a permanent feature.

But everything I eat tastes disgusting. So much so that I often can't eat it and I have to look for something else.

I hate it.

Enough about food. It's going to make me wretch.

So after I received some fluids, for over four hours, we had the same plan we started with. Take the anti-nausea meds like clockwork.

Seems simple. I had already done what was recommended so it's not like I wasn't trying to stay ahead of the game. I even set an alarm for the middle of the night so I could continue taking my meds through the night. I was told that most people don't feel the nausea pains until day 4, and that's usually because they had not been already taking their anti-nausea meds.

My nausea began the same day I received my first dose of chemo.

And I was unable to recover.

What I've learned: I'm not "most people".

For five days I didn't get out of bed. I slept for literally 18-20 hours each freaking day. I didn't eat for days. (This of course made the whole nausea feeling worse.)

I was unable to really do much of anything for myself.

I began vomiting three days after treatment. The fourth day got worse. And the fifth day after treatment was the worst day (in terms of vomiting).

And as the days moved on, getting to the Cancer Center became more difficult for me. Riding in the truck was too much movement and caused vomiting. But I had to go.

The fourth and fifth radiation treatments, which corresponded to days 6 and 7 after my chemo treatment, I ended up vomiting while on the table to get treatment. Once after treatment was over, but once before it began, causing us to delay that day's treatment. I did end up getting radiation on that day, just a little while later.

Seven days after chemo, I was in bad shape. Again, couldn't really get out of bed except to get to radiation, and, I still haven't found any relief for my nausea. And, it's doctor day. So we meet with the radiation doctor and nurse.

Major concern is my weight loss.

Still haven't eaten anything substantial.

I lost about 10 pounds in a week. My weight gets much lower and we'll have to delay radiation. I'll be too weak.

The g-tube was discussed.

We went home.

Relatively speaking, it was the best day yet for getting food into me. (Not that I was able to get a lot into me, mind you.)

Then it all came back up around 6:00pm.

The g-tube wouldn't help my nausea.

And the nausea is what I need to stop.

Day eight after chemo:

Much worse day than the previous day. Woke up around 6:00am needing to wretch at the toilet. For over an hour. Dry heaves suck.

Got to radiation.

Got through radiation.

Met with Physician's Assistant. She was fantastic. Then met with chemo doctor.

The g-tube is again discussed.

Insertion of the g-tube is now scheduled.

It's not so much that I'm going to have a g-tube that bothers me, it's the fact that the g-tube isn't going to do anything for my nausea.

The PA writes out a plan, regarding anti-nausea, to administer after the next dose of chemo.

The next dose of chemo?

That scares the shit out of me.

The original plan was to have three doses of chemo throughout the whole thing. And these are big doses of powerful stuff. Cisplatin is famous for making people nauseous throughout its history. What's been surprising for all of us is that it hit me so fast and the anti-nausea drugs are not working.

So my nurse said we're not going to do that to you again.

And my doctor has now split those last two doses into six smaller doses. So for my next chemo treatment I'll be getting about a third of what I originally got on that first day.

That still scares the shit out of me.

A third of what I just went through, of what I am still going through, terrifies me to no end.

It was, and still is, that bad. My stomach is still in knots. I still have difficulty eating because everything tastes nasty (a side affect of chemo). I'm nauseous most of the time. I'm tired all the time. And we're 11 days out from when I had treatment. I can't feel good about having to endure only a third of that. It scares me.

Then a very good friend posted the following on Facebook:

What It's Like To Go Through Cancer Treatment

And all I can do is laugh and cry through the whole thing because it really is spot on. That is what it's like, at least for me. I'm fighting a god damn mountain lion with a bear that can only fight the lion by going through me.

So I'm getting mauled both inside and out.

The last 11 days have not been a roller coaster, there haven't been any "ups". Instead it's been a living hell. The bear just kicked my ass. I actually said to Rachel, "The chemo is killing me."

Then I went to the hospital (short stay) on the 8th day after chemo.

Doctors were very concerned about fluids. It takes 2 hours to deliver 1liter of fluids into my system. I was to get two liters that day.

The previous couple of days I began using MMJ to see if that would help with the nausea. I'm lucky and very grateful to live in a progressive state where we can do such things legally.

It worked.

At least it works when I am fully "medicated". If I'm only partially "medicated" then it doesn't work at all. So we've added this to our arsenal. Then we promptly ran out of the stuff that was actually working for me. I haven't found a replacement, yet, and so the nausea continues.

But I can tell you that I have rediscovered my love for Pink Floyd. ;-)

In any case, while in the hospital I wasn't feeling nauseous so I ordered pudding. I didn't quite finish it, there was still about an 1/8 left in the container, but when the nurse came in to see how I did eating it, I pointed at the container to show her the top 7/8 that was empty, and said "That's more than I have eaten all total in the last week."

Then I ordered lunch.

Ate half a ham, turkey, and cheese sandwich and part of a baked potato.

I began to worry that I was eating too much after going so long without eating, but everything stayed down. I actually felt pretty good.

On the tenth day after getting chemo I had someone other than Rachel take me to the Cancer Center so I could get my radiation treatment. It was the first time I felt like I could go with someone else. It went the way it was supposed to go: I get there, I lie on table, they put the mouth piece in my mouth and lock me down, they radiate me, I leave. Fifteen minutes.

Then I spent the rest of the day in bed.

That was yesterday. I'm still nauseous, probably at this point from hunger, and everything sounds like it's going to taste nasty, but at least today I am able to finish writing this entry.

So that's the update. I'm getting a g-tube soon, we're cutting the amount of chemo I'll be getting each treatment to a third of the original dosage, I'll be getting weekly chemo treatments, and oh yeah, all those side affects of radiation haven't even kicked in, yet.

Future challenges.

I'm an emotional wreck; I'm tired; I feel like shit; I feel bad for my kids; I feel bad that I can't do more for myself or my family; I cry; I sleep; I cry some more.

Then I run to the toilet to wretch.

This was certainly not part of the plan.


  1. Randy,

    It's been almost a week since you posted, but I wanted to say that your honesty and courage is inspiring.

    I'm also glad to read that your appetites for food and Pink Floyd are coming back! Both are very important :)

    Your Math droogies miss you, Randy, so come back in one piece for us (or at least "approaching" one piece)!

    I hope the remaining doses go as smooth as possible, and that you and your family get though this, safe and sound.

    1. Thank you, Christian. I'm doing my best. Not sure what I'll be like come Fall. This has been pretty rough. Enjoy the rest of your summer!

  2. Oh yeah Cisplatin is pretty nasty, i generally couldn't get halfway home from the hospital before i needed to be sick, fluorouracil is another nasty one to keep a eye out for, anyway be safe and well Randy.
    i had a little article published in our local news website regarding my cancer story.