1/11/13: Hickman’s, Nausea and True Blood – 3 posts for the price of 1 – total ripoff or genius, you decide…
The following period takes place from
Hospital Day 8 & Part of round 2 of Chemo, Schedule 1b, Day 5
Today this post is dedicated to my new friend Becca Sweeney, a mom of two going through another transplant. Please keep her in your thoughts and prayers – she is a fighter and has quickly become one of my#1 inspirations. We want her home for good this time so she’s back with her sweet family and loving friends, running as many ½ marathons as she desires!
So today, instead of ending with my normal summary quote, I will begin with a quote from Becca Sweeney, an overture of what is to come from my banterings today. Mind you, when reading this quote, please know I find this woman to be the ultimate fierce warrior, wife and mother that uses her mind, body and spirit each and every day, ignoring the statistics and making her own odds (and helping me to make my own too)!
“Numbers can just be scary and we aren’t numbers … we are fighters!”
Today’s post is about education, nausea (not just the feeling you have to vomit kind) and the revelations you have when you realize what a powerful item mind over matter is. Lastly, we must talk about True Blood chemo, if I wasn’t already hospitalized for leukemia I would questions my sanity (although that may still not be a bad idea).
Skip ahead if you’re Mensa material and need no visuals or explanations … Hickman’s – Leukemia patients have to have a central line put in that pumps off of their heart (called a ???? … yep, you guessed it, Hickman) – especially those patients like me, who will also ultimately require a transplant for survival. I know it’s in poor taste to brag, but I do have the “Cadillac” double lumen version (they also make triple lumen’s but I mean, I’m good with my Caddy – it’s a classic right), meaning they can pump me with multiple drugs at once – even those drugs that can normally not interact. Plus, I like the fact that it doesn’t hurt when they draw blood from you like some ports would. Don’t get me wrong I am always hyper aware of it (especially after my recent snafu) but once in a while I am able to forget about it just for a minute and smile!
Why am I torturing you with this educational anatomy lesson you ask? I think it is to hammer home that it isn’t just leukemia and chemo we have to contend with on a daily basis, it’s all of the minor freedoms we are no longer able to take for granted too!
- Example, when showering with a hickman – what is normally a 30 minute daily ritual for most, when you shower with a hickman, it becomes a 1 hour long process just to get in the shower and yet another hour is used up by the time you’re dressed, bulldog clamped in (you have to wear a bulldog clamp so your lines don’t merely dangle out of your body.
- Then there’s the story of Niki vs. The Hickman, think Hickman 1, Niki 0. Let me preface this by saying yesterday I marked the 4th consecutive day I been hooked up to a continiuous chemo drip since Chemo day 1, which means showering is no longer a 2 hour start-to-finish process, but a half day affair (and not the Diane Laine “Unfaithful” kind).
It all started out very nonchalant, a chemo day like any other really and my ‘vomiting’ nausea finally seemed to be in check – I’ve become a big believer in mind over matter – if I keep repeating I’m sick over and over, I will be. So instead, I tell myself I am sick because I am bored (which is where me solo drag racing through hospital halls takes effect). Anyhow, I divulge.
Everything was going well during the way too long shower ritual until I stepped out of the shower and on to my medicine line, attached to my Hickman (thank goodness it wasn’t the chemo line I destroyed) then the line got entangled with my foot and I had no choice but to step on it or lose my balance and suffer the unknown – I quickly clamped the lumen on my chest (the part of the Hickman that hangs out of your chest) and proceeded to freak out for about a half hour – even though all the nurses were doing their best Laurence Olivier to damsel in distress imitations to talk me down. Now, if that had been chemo, I shudder to think of the consequences, but here’s where mind over matter comes in, it wasn’t chemo that day and now I know what to watch out for! Glass 1/2 full!
Moral of the day EDUMACATE YOURSELVES! Seriously, educate yourselves, especially on the things in life that scare you. The more you know and the more you have in your control, the less you have to rely on others and the more power you have to thrive and push and win. It has been proven that less hospital mistakes/errors/etc. occur when patients take a proactive approach to their treatment (although mine was a bit extreme). Needless to say, I will not be first in line to repeat that bad impersonation of a riverdance performance again, although in an odd way it did make me feel confident in my ability to think on my feet and take charge of my destiny.
Nausea – JUST DO IT!
After this chemo round finishes and I have my 6th lumbar puncture (which so far has left me with quite a few more punctures than necessary due to the over-zealous poker) I will be officially halfway through the chemo that preps me for my consolidation chemo (total body obliteration chemo which is induced about a week before transplant – basically knocking you flat on your butt with no immune system).
Everyone I talk to says this is the Mt. Everest of chemo – no holds barred. At first this terrified me and caused me nausea so badly I wanted to curl up into a ball, because I had yet to understand that nausea isn’t just a bodily reaction – in my case it is a total mental, spiritual and bodily reaction – a need to win the total trifecta (mind/body/spirit) is crucial as I go before Leukemia’s version of Mt. Everest.
Hilariously enough, what made me realize this was not some great epiphany one late or a sleepless black hole of a night lost to random utterings of disjointed words and mumblings. It was the Nike slogan – JUST DO IT! Those 3 little words are all I needed to be reminded of every time nausea sets in now (is it a perfect record? Not by a long shot, but it’s about finishing strong … and obtaining a few battle scars along the way will only build character) and since then, they have carried over to all other aspects of this cancer for me now.
JUST DO IT! for all those that walked this hallowed journey before the word cure was even part of the vocabulary used to describe treatment for Adult PH+ ALL Leukemia.
JUST DO IT! for all those that are donating, praying, fighting and cheering me on to win.
JUST DO IT! – I AM JUST DOING IT FOR ME! I am a fighter and I finally think I am accomplishing this round with mind, spirit and body … the trifecta is a prerequisite to win and I believe I now have it, when combined with your very own strategic set of black ops (mostly the correct cocktail of anti-nausea meds – I kid of course, sort of!) – you become UNSTOPPABLE! So here is to today, right now, this very moment, the very second of unstoppable force!
My methodology you ask? Well, I will try to oblige then! I like to first hit the chemo with mind over matter, allowing me to quickly come to terms in my mind with the unlikely fact that the chemo, while slowly exsanguinating your body of both the good and bad cells, it’s got your back. Ultimately you need to ride the wave of nausea – whether fear based, anxiety based or otherwise – armed with many anti-emetics as possible that is! Then you just have to deal with it, because NOTHING, ABSOLUTELY nothing in life is free – even life itself, which is why I always make sure my spirit is in check with my journey to becoming a survivor.
When it comes down to it, it’s the small things that add up – feeling my husband’s soft kiss upon my brow when I’m too weak to muster up the strength to reciprocate. The way I look at life with a new unadulterated passion. Sure, the core of who I am remains – a core I will always be proud of, but my perspective has shifted in such a way that laughter in the sunshine which I experienced on the phone with my sister Bri this morning, made it into the top 5 moments of my week. Realizing my 21 year old sister is trekking cross country just to come be with me on her break because despite our age difference, we share unconditional love and an unbreakable bond. Knowing my friends Jenn and Holly will always have my back – without a doubt – no matter how tough it gets.
Ultimaly, there is no right or wrong vantage point, and I say the next sentence with only a mild narcissistic sentiment … this one certainly doesn’t have to be the one you use, but I urge each and every single one of you to add perspective to your life and get yourself (a vantage point) one for your own sake – JUST DO IT!
True Blood Chemo
Click the below intro song – this may be morbid but it’s my “pump me up for chemo song” – whenever I get my arch nemesis … the True Blood Chemo (aka Doxorubicin 24 hour infusion), hey, what can I say … it’s not my first rhodeo with Doxorubicin and I come prepared with music too
As if chemo isn’t fun enough by itself the powers that be put me on a 24 hour straight dose of what I like to refer as True Blood chemo; it may be too late to add, but hopefully it’s not asking too much to ask that I don’t turn into “Beeeehl, Sookie, or even little old Bunnicula?
www.giveforward.com/Niki – thank you to all who have donated, we’re now at almost 55% of the goal. Can’t express my gratitutde to everyone for all the donations, prayers and heroes – the people who, because of this experience, have signed up to be donors – AWESOME!