Sunday, November 1, 2015

Cytoxan Round One - Health Update

After months of anticipation, preparation, insurance appeals, and tug-a-wars between my physicians I found myself wandering the hospital halls on my way to my first round of chemotherapy. From the moment we arrived at the infusion center I knew I was right where I belonged! The nurse walked us into a large private room which was unlike any infusion center I had seen at the local hospital I typical attend. Everyone on staff was extremely attentive and invested in their patients, you could just tell! The procedure was thoroughly explained to me before we began, and all the meds were described in detail, including a full list of side effects. Right off the bat we had a fabulous Port access which always sets a great mood in my opinion! ;) The infusion started out with some saline, followed by Mesna, a medication that protects your bladder from the harsh Cytoxan. (Without pre medicating with Mesna you will find yourself peeing blood, or ending up with bladder cancer.) About an 1-2 hours into the Saline and Mesna we started the Cytoxan drip which actually only last about an hour. The bag was brought in by a gowned and gloved nurse in a bright yellow bag that read CHEMOTHERAPY in all caps. It was actually very intimidating! She carefully hooked up the medication and we began! Everything went extremely smoothly and I had no reactions. After the bag was empty we ran more saline and another batch of Mesna. The entire encounter only lasted about 4 hours.

During the infusion I made sure to suck on some lemon drops which I heard can help nausea during chemo! I also kept myself busy with a nice big coloring book, and the company of my Mother and best friend! The side effects of the Cytoxan really didn't hit me until about 6 hours after the infusion. That night I suddenly become completely exhausted, as in 'could barley make it from the couch to the bed' exhausted. A small headache had begun, and a bit of a spinning sensation began to take hold. I quickly dosed up on some Zofran which is an anti-nausea med. Luckily this kept my vomiting at bay! There were definitely some nights where I woke up dry heaving over the side of my bed, but no serious vomiting took place. For the most part the few days after chemo were mostly filled with sleepiness, nausea, a slight headache, and some hives/itchiness. I laid on the couch and binged watch Netflix for a full 72 hours! haha Once I hit the fourth day I started feeling like myself again which was great!

To keep in mind: the dosing of Cytoxan I received was my "initial dosing," meaning a smaller than normal amount to simply introduce my body to this drug. I did not received a full fledged dosing such as the ones I will be receiving from this point on. As of my next infusion we will be moving up with the toxicity by increasing my dose, tripling what I had this week by my third infusion! As I am sure you have guessed each infusion will be harder, and more toxic, meaning each infusion I will get sicker, and handle it with less and less grace. While this round may have been "easier" than I imagined, the next few, especially the third and fourth dosing, will be extremely unpleasant. I am very lucky that my physician thought to work me up to the complete dosing since my body is so sensitive! I really believe this will help my body adjust so much better to this harsh poison. Unfortunately since my initial dosing was the 27th of October my next rounds will fall the the last week of every month, meaning the day before Thanksgiving and even Christmas Eve... I did not plan that well! haha

Since the infusion things have been pretty quiet. I have been taking it very easy, and being sure to wear a mask if I leave the house. I will have to head up to the hospital at the end of this week to take some blood panels and see "officially" how my body reacted to the medication. In the mean time I will continue to take it easy and probably stay at home for a few more days. One thing with Cytoxan is that you have to be filled with a ton of fluids for the first few days! They ask you to drink at least 3 liters of water a day to make sure you are flushing the chemicals out of your bladder adequately. Luckily this isn't too hard for me since I can pump water though my feeding tube all day! (Tubie win!) The only problem is that you have to pee constantly, and since you have a dangerous chemical passing through your bladder you are not aloud to hold it! So if I have to pee everyone better clear the way! lol

Speaking of my feeding tube, the balloon that holds it into my stomach popped this morning! The tube was just kind of falling out of my stoma which was causing some pain. Luckily I had an extra tube at home as I had recently scheduled an appointment to see my doc this upcoming week to change out the tube. Unfortunately it wasn't going to last that long so I had a choice to make: 1. Wait hours in the ER for a doctor to do it OR 2. Do it myself at home. (Yes, people do this all the time.)
I decided to go ahead and just do it at home in the end which was quite an adventure! I created a sterile area, put on some gloves and pulled the tube out of my stomach. Since the balloon was deflated it just kind of slid right out of the hole. It was a pretty odd thing to do to yourself I am not going to lie! lol Next came placing the new tube which was even weirder! I lubed up the tube (with KY because I didn't have any surgical lube haha), placed it into my stoma, filled the balloon and TADA! My new tube was in place. I was seriously so proud of myself! I'm not sure why it freaked me out so much in theory because it was actually super easy and painless! So now I have a shiny new tube and don't have to drive three cities away to see my doc for 15 minutes! Woop!

I even got to enjoy my Halloween! Mask, oxygen, feeding tube, tons of equipment and all. I was the "Diet" Kool-Aid Man. OH YEAH! Halloween is one of my favorite holidays because I absolutely adore making costumes! It can be tricky having medical devices though because everyone just assumes they are part of a costume. It makes for some really awkward conversations having to explaining that you are actually just really ill! lol We stopped by a Krispy Kreme Doughnut shop on Halloween because we passed one and Noel thought it looked yummy. The host asked us what type of free doughnut we wanted, and Noel and I were both like "Wow, everyone gets a free doughnut on Halloween!?" And the poor guy behind the counter goes "Yeah, anyone in a costume gets a free doughnut!" ....I was not wearing my costume. Like I said, awkward! lol But hey, I'll still take the free doughnut! ;)


  1. Ha ha haaaaaa, you crack me up Chanel !! Anything for a Krispy Kreme. LOL. I know earlier said that sometimes you'll do a chew and spit. Idk if that's humanly possible with a Krispy Kreme. The spitting part anyways !! Anyhow, I was just gonna give you a shout saying that I hoped you were doing okay with your Cytoxan and was stoked to see your happy post :) I'm happy for ya that you're doing so well, and you look FANTASTIC !!! ..... and Zofran really does the trick! My meds make me sick sometimes so I definitely know. Glad you had a Happy Halloween!! xoxo

    1. hahaha thanks girl! I totally chewed it up and spit it out! was for sure tough ;)

  2. Eres una guerrera hermosa, sigue luchano!

  3. Lol. That is great will power! I'm not sure I could have spit it out. Good to read you are doing as well as you are with your infusions of cytoxan. I feel fortunate to have had the pill form after reading what you have been going through. Keep us posted. God Bless! Your Sclero friend from the North.