Monday, January 25, 2016

Mini Live Blogging

Good afternoon everybody! Coming to you live from Kalamazoo -  the smiling-est, punk-iest, chattiest, fashionista chemo gal.

Been in the poked and prodded stage for a few hours now. All the pre-drugs have been doled out and I'm into the proper chemo infusion. (How do ya like the taste of that shit, Mr. Tumor? That's right, drink it all in and DIE DIE DIE!)

Might be feeling a little cheeky today.

My sister is here with me today. Working while I constantly bug her with little anecdotes and conversation.

2:55 PM

It is wiping me out today. One minute away from the end of my infusion and then strapping on that damnable pump for two days. But this does mean that a nap on my couch is only about an hour away.

Nope, more than a minute away apparently. The infusion machine has lied to us! See... *this* is why you come around for the "live" blogging. You never know when the current will change!

3:15 PM
Done. Super wiped. Thank goodness for a super indulgent sister to take care of all the things. Thanks to those for checking in.

Friday, January 22, 2016

Just an earthbound misfit

How about story time with Victoria this evening? We go to the realm of Greek mythology, one of my favorite wells for stories, to talk about Daedalus and Icarus (a very brief retelling). Daedalus designed the labyrinth on the island of Crete for King Minos to cage the Minotaur. He also came up with a plan to help Theseus escape the labyrinth once the Minotaur had been killed. For this, Daedalus and his son Icarus were imprisoned in the labyrinth by King Minos. As they could not escape the island by sea, the only way left was by air. Daedalus created two pair of wings made of branches, string, feathers and wax. He instructed his son on how to fly with the wings and warned him to not fly too high and close to the sun. They donned the wings for their escape and Daedalus led them into the air above Crete. Icarus was young, and immediately was caught up in the delight of flying and drawn to the heavens above. In his rapture, he forgot his father's warning and flew higher and higher. In short time he was close enough to the heat of the sun for the wax in his wings to soften and begin to release its feathers. As the feathers fell away Icarus was no longer able to ride the air and fell into the sea, which now bears the name the Icarian Sea.

This story came to mind a couple of days ago as I was listening to my favorite Pink Floyd song, Learning to Fly, on the radio. The station then played Ziggy Stardust, and I was then reminded of the latest thoughts I'd written down for the blog about the battle language of cancer. It was interesting to me how the song, the story and my notes all seemed to swirl and tie together in my mind.

You see... I've always considered Icarus to be a kind of inspiration. Given the opportunity to reach for the sun, to grasp Apollo's hand, to see the world from such heights - sign me up. Yes, it is a risky endeavor. But life itself is a risky endeavor. And I have always been a "both feet in" kind of gal. Driven by my insatiable curiosity and eagerness, I often find myself starting at the deep end of any endeavor. This sensibility has only increased in the time since my diagnosis.

Pink Floyd says: "A soul in tension that's learning to fly; Condition grounded but determined to try." And that is exactly my current state. Cancer may be slowing me down right now and limiting some possibilities, but I am determined to rise above it. I will not be imprisoned by the labyrinth of treatments, appointments, scans, side effects, worries, and the dirty mess of it all. I will always fly to the sun when given the chance. I am always eager for more knowledge, more experiences, more of the wonders the world has to show. Our world is infinite and ever growing. New books are being written right now, a song is being played for the first time at this moment, stars and people are being born and dying every minute. The whole of it can never be fully known. But, dammit!, I am determined to try

This is the type of language and sensibility that I have used while on my cancer "journey." I never caught on to using the metaphor of war in regards to this disease. Though it is very popular to refer to a patient's "battle" with the dark forces of cancer. I don't know that I very much like the war language. For me, I am not fighting against anything. I am Living despite the obstacles or difficulties or pain or frustrations. I am Living to spite cancer. To show that it cannot keep me down or caged. One of the many articles about Bowie's death last week said something about his courageous battle with cancer. But I think that is the wrong way to talk about it, and especially to talk about his death. He released an album days before he died, and worked to create new things all the while he was ill and going through treatment. This is not fighting... that's straight up hardcore Living. He pursued his passion until the very end.

If this is a battle that I am in, then there is no winning. So why waste precious time and energy fighting when I could be doing so much Living instead. Why fall into the negativity and fear of being at war? Cancer is not my enemy; it is not even my opponent. It is a thing that I have to live with, a constant companion. If I cast it as an enemy, then I have to sleep with that enemy every night. How hard does that make it feel? Why make life any harder? It doesn't have to be that hard. I choose positivity. To stay on the sunny side of the street with my chin upturned and my thoughts lifted. I will pursue passion and not waste my time in the dirty trenches of war.

There was a great podcast that spoke to the language of cancer and the ways in which we talk about it. It is what initially had me thinking about all this. For those that are interested, here's the link to it: The Cancer Show, part 1.

Want to hear my favorite Pink Floyd song? Watch it Here.

And to finish, a beautiful piece of art: The Lament of Icarus:

Tuesday, January 12, 2016

Chop, Chop

It's been a few weeks and I've had a lot of things on my mind. The new year has come upon us and I made a bold decision on New Year's Eve. Many folks have asked about whether or not I would lose my hair with the chemotherapy. There is one drug in my cocktail which has hair loss as a side effect; it happens to be the 5-FU which is what is in the 2-day pump. The first two rounds of chemo (which included the 5-FU) I lost about one third to half of the bulk of my hair. I had very thick hair so it wasn't really noticeable to anyone but me and my hairdresser. However, I had no new hair growth afterwards. So this time around, losing half of the half that is left was getting to be pretty ugly. I had reached a point where there was not much to do to hide the thinness of what was left except to put a hat on it.

I awoke NYE and realized that I was finally ready to make the transition to a more hairless existence. It had taken me awhile to come to this because I was not yet ready to start looking like a cancer patient. I've prided myself that in my time with this disease I have yet to bow down to it or have any outward appearance of being sick. I was "passing" as a perfectly healthy person. And there are many times when it is nice to go out, meet new people and not have to divulge my cancer in conversation. It's an old conversation and not always one that I want to have. I refuse to be defined by cancer, defined as a patient, defined as a sick person or defined by the pity of others. I want to be introduced and seen as Victoria. Once you've lost all your hair to chemo, and that very bald look is distinctive - especially on women, it becomes a first topic of conversation. I'm not certain that I'm yet ready for that to be the first thing that people think of when they see me, but that time is coming and there is little I can do except adapt again.

But in the interim, a couple of my girlfriends and I worked with the already bald spots and went for the mohawk. What's left is still thin and thinning. But it is like the ultimate comb-back-over and it looks intentional. So for a little while I'm trying out the badass punk chick look. I'm actually really enjoying it a lot and am hoping to keep it for a little longer. And when it thins too much, then I'll just get rid of the rest and rock that look the best I can as well. Luckily I've been buying myself hats since I was thirteen and have quite a collection, as well as lots of scarves. And I will end up with a wig or two just because they will be fun. Blue, the first wig will be blue.

Round five of six chemo sessions was yesterday. So I'm almost to the end of this round. Still tolerating very well and still lacking in too many physical issues. I'm recovering quickly once the pump comes off each time and by off-week I'm up to my old speed. I had company again for my infusion this session. It does make the day much nicer to have a friend keeping me company and helping the time pass quickly. I've also asked them to take the Ativan out of the pre-chemo drug mix. I omitted it last session two weeks ago and I felt so much more mentally focused throughout and afterwards. Omitted again this week to see if it made the same difference, and it certainly did. The Ativan is an anti-anxiety drug which also has great anti-nausea properties. As I haven't had any nausea issues this round I thought it would be safe to remove it from the cocktail. Removing it hasn't had any ill effects. And I certainly prefer having my mental facilities completely at my disposal. I just don't think anti-anxiety drugs and I are meant to be companions. When I've had them my brain is too zombie-like for my fancy. I am uncomfortable not being able to access all my facilities. Until there are nausea problems, I will continue to keep this change. Plus my insurance probably loves having less to pay for.

I've got more on my mind and have notes of thoughts to share. Another day. For now I'm going to start bingeing on the new season of Galavant. Happy, hilarious musical nonsense to brighten the cold winter night.