Thursday, December 31, 2015

The Grinch That Barfed On Christmas - Health Update

I thought I knew. I really did. I thought I knew what nausea was -- I was wrong.
Nothing I have ever been through quite compares to chemotherapy, besides perhaps almost dying of Meningitis & Guillain Barre last December. I have been on low dose chemo for years, and was working up to a full dosing of Cytoxan over the last three months, but none of it even remotely compares to the high dose I am now enduring. I can honestly say, now that I have encountered both, that there is an extensive difference in how the body responds to low, and high dose chemotherapies. While yes, they are both the same drug, one dosage provides nausea that one will never be able to comprehend until they have physically received it.
Dang. I thought I knew nausea on 25mg Methotrexate. Nope. That was a walk on a beautiful sunny beach compared to high dose Cytoxan. This is a whole other ballgame.

Gettin' Christmasy at Chemo!
Let me tell you about my holiday. Cytoxan was on the 23rd, and that night things started to get funky. Dry heaves, extremely red in the face, head pressure, sweating, hot, hot, hot, and exhaustion. The next day I was lethargic, freezing, and unable to keep my eyes open. The dry heaves increased as the second night rolled around, turning into full fledged barfing episodes all over my bed. Now, since my esophagus has zero muscle function barfing is somewhat of a challenge. It can happen, but it's not so much a projectile vomit one pictures in their head. It is more of an urp that takes way too much effort. It's noisy, and messy, and comes out in wild streams. After vomiting to the point of becoming teary eyed, and getting absolutely no sleep, I found myself lying in bed all the next day in and out of a sleep deprived consciousness. I couldn't run my tube feeds adequately, so was luckily I had the IV fluids at home. The nausea was like a ton of bricks; no medications would touch it. Holy hell it was misery. The next day of course was Christmas -- the third day. Everyone familiar with chemo will tell you that the third day after your infusion is the worst. Well, I attempted to see my family on Christmas, only to barf all over my step-dad -- twice. I then proceed to barf in the hallway as my family helped me into the bedroom to rest. (For those of you wondering, as I am sure someone will suggest it: yes, I tried medical marijuana for nausea. No it did not work.) Things continued like this until about four days post infusion. I will here by be naming Cytoxan: "The Devils Piss."

On the opposite hand, I am already starting to see some improvements in my everyday life thanks to this hell of a drug! Where once I was unable to climb a flight of stairs without stopping for rest due to exhaustion, and shortness of breath, I am now able to do so with proficiency! I noticed it the other day; I needed to run out to my car because I forgot my phone. I didn't want to be attached to a bunch of tubes and tanks for such a short trip so I unhooked my feeding tube, and left my oxygen inside. As I walked up the flight of stairs (8 steps) to return to my apartment I didn't stop, and I wasn't huffing and puffing at the top! I know that seems minuscule, but it is actually a huge deal! This means that the Cytoxan is removing some of the inflammation and other crud from my lungs, leaving me able to breathe better. From that moment I began taking my little O2 sat reader everywhere with me to see how my oxygen levels were doing at other times during the day. My oxygen stayed stable when at rest (excluding sleep of course), and stable-ish while walking short distances; only when I began to exert myself with longer trips to say: the mall, grocery store, or events did my saturation begin to decrease to the upper 80's. (Also if  I talk with too much excitement! lol) It seems the duration of time I push my body weighs into my saturation levels heavily. I noticed when I do not use my oxygen I get tired very quickly, and am not able to be out of the house quite as long. I think the low O2 upon a long day has to do with my weak diaphragm as well. My main goal with Cytoxan is to rid myself of the need for supplemental oxygen completely, and while I am no where near that goal yet, I am definitely able to start decreasing my usage which is a huge victory! So if you see me taking short trips without my O2 that is why. I will of course be smart about this opportunity, and always have a machine with me while I am away from home. I still need the assistance from the supplemental oxygen, just not constantly like I had been using it the last many months.

I also have noticed some improvement with oral intake. While my esophagus will never have muscle function like it used to, the inflammation that was once lining it has eased up incredibly! This means purees, extremely soft foods, and liquids in very small amounts/bites can be dropped down my esophagus to the stomach by gravity. Unfortunately my intestines still aren't playing very nicely and like to cause quite an uproar when I attempt any oral intake, but my gastroparesis does seem to be slightly improving at least. Due to the intestinal issues that cannot really be tamed by any medication, my digestive function, and nutritional absorption will always be very poor, leaving me tube fed indefinitely for adequate nutrition. However, that doesn't mean a bit of recreational eating (even if it comes with misery) can't be had every once and a while!
So far I have had some yogurt and it went well -- if you don't count experiencing heart burn for an hour then throwing up... Maybe next time! lol ;)

How amazing is Mount Rainier made out of lights!?

I did get to experience some fun this holiday season. I attended an awesome event called Zoo Lights with my best friend. We ran around the zoo/aquarium with tanks, tubes, and masks while every passerby looked at us like we were crazy -- or possibly patient zero. We had an absolute blast, and did just about everything, from camel rides, to the carousel, to watching sharks swim by. Even though my body is now plagued by fatigue, sore joints/muscles, and will need a good amount of rest to recoup, living like a normal person even for just a night is always worth it - I even wore my fancy wig!

Happy New Year World!


  1. Thrilled for you !!! Running around with your girlfriend! That is just fucking awesome. Go on and rock it out tonight! Stoked to hear about your pretty hardcore improvements. I'll be excited to hear all about it. Here's to 2016. Another year of Chanel kicking some ass. Lol lol

  2. i have to get a wig, love yours. where did you get it?