This morning I find myself at a hospital; here for a friend and not myself. (A scheduled and expected surgery; she's already done and in recovery and awake.) They all smell the same -- hospitals. And even when they try to make them feel warm, there is an underlying sterility on all the surfaces and in all the people. I tune into the open WiFi and eventually find my way to Facebook, as you do. There's a relatively new function that allows you to look over your postings from that day through your years on FB, and share it with a new reaction or new thoughts and such and whatnot. I enjoy seeing this mini history of myself. It's a good moment of mindfulness for me. I sit and try to bring back the day and the thoughts and moment that brought about the choice to share this contemplation, photo, video, meme or otherwise. It forces my brain to work and remember, and brings me closer to my Self's center as I attempt to commune with my younger self.
Today, this was in my "Memories":
4 Years Ago Today Thu, Mar 22, 2012
"Feels pretty lucky to accomplish one thing in each day right now. Today, I baked cookies."
This is most interesting as a memory for me today. Four years ago I was barely three months into this cancer journey. This post was one week post a five-week radiation/chemo round and I remember I was completely wiped out and dealing with pains and side-effects. I had already stopped working and the days were just hard. I was also dealing with this whole new idea of short term disability and what was I going to do with myself in the days and weeks to come. So here I am today recovering from a hard infusion day yesterday. One where I was just tired of this whole thing - the chemo, the cancer, the constancy of it. But today I had a purpose and and a friend to support and it makes coming up out of the darkness so very much easier. As at my last infusion (which I am aware I did not at all share with you -- bad blogger, bad!), my energy has been good and recovering quickly. And no nausea issues, which had been an issue in prior sessions. So being here for someone else is not too much strain on me and Oscar.
I clearly was choosing some optimism and self-indulgence on this day four years ago. I don't remember those cookies, but my description in the comments make me want to attempt a recreation. "A bastardized peanut butter cookie recipe, using almond butter, chopped almonds, extra vanilla and more salt." I am certain the roomie will approve and we shall enjoy the fruits of these mental labours of mine today.
It is heartening to know that I have continually pushed through even the hard days of this journey with some sense of positivity. Whatever adaptability skills I picked up in childhood, I am thankful for them.
The week before this was an epically fun and wonderful time. I was surrounded by friends new and old and experienced the quality of this community I have chosen. I was told, multiple times, that I was an inspiration to people. And every time I was humbled by their words. I'm just being me, and attempting to be my best me (I stumble, but I'm clumsy like that). It doesn't feel so very special to me. But I am grateful for the compliments and they do help lift my heart. And I do so believe those emotional and mental spaces are as important to keep well as the physicality of me.
Coming off the high of last week and right back into treatment and the quietude of these first days, clearly was a more difficult transition for me. Uncertain why that is, however. I've come off many great weeks and weekends with family and friends recently. It has been very nearly six months since re-diagnosis. Perhaps it is just the wear finally beginning to show. I'll have to spend some quiet time with myself to ponder.
Tuesday, March 22, 2016
Monday, March 21, 2016
The Live la Vida Loca
10:30 AM
Another Monday at the cancer center. For the first time since this started up again last fall, I woke up and just didn't want to do it today. I had such a good vacation and adventures in NOLA and at Gulf War, and I'm feeling pretty good. Just not excited about the downward slide that today will take on me. So after an additional tap on the snooze button and internal whining, I dragged my ass out of bed and got ready anyway. A dress, scarf, my blue cowboy boots... fake it 'til you make it, and my mental energy for the day has increased. But I'm just not pleased today. S'alright though, because that's perfectly normal. And I have a very enthusiastic chemo buddy with me today. So she is certain to keep my spirits high no matter how the chemo treats me today.
11:25 AM
Been hooked up, borg-like, since my last post. Pre-meds are finished and now on to the Avastin for a half hour. Then we'll get into the rough stuff after that. For now, more online videos and chatting about vacation and warmer climes.
12:12 PM
And now comes the actual chemo. Which means I'll be out of here by 2:30, relatively early day. I might have mis-titled this post today. Not the craziest of times here.
12:25 PM
We are apparently playing dueling laptop games here though. Posting on walls rather than turning our screens to share. Silly chemo buddy!
12:55 PM
As I expected, it's wiping me out today. Probably something to do with practically no sleep a couple of nights ago while road-tripping home and the barest of naps to recover. Though I did sleep the sleep of the dead on Saturday night. A full nine plus hours without a single wake-up in the night. Perhaps this means lots of napping and catching up on rest early this week. Not a bad thing.
2:30 PM
I actually ate the majority of my breakfast *and* half a sandwich for lunch! I am on top of the food and hydration today. Now whether I want a whit of food for the rest of the day is up for debate.
Just got my 5FU push and they are hooking up my pump now. I think I shall call this session's pump "Oscar." Maybe that will make me hate it just a little bit less.
This also means that the live blogging is done for the day. Yup.... Th-th-that's all folks!
Another Monday at the cancer center. For the first time since this started up again last fall, I woke up and just didn't want to do it today. I had such a good vacation and adventures in NOLA and at Gulf War, and I'm feeling pretty good. Just not excited about the downward slide that today will take on me. So after an additional tap on the snooze button and internal whining, I dragged my ass out of bed and got ready anyway. A dress, scarf, my blue cowboy boots... fake it 'til you make it, and my mental energy for the day has increased. But I'm just not pleased today. S'alright though, because that's perfectly normal. And I have a very enthusiastic chemo buddy with me today. So she is certain to keep my spirits high no matter how the chemo treats me today.
11:25 AM
Been hooked up, borg-like, since my last post. Pre-meds are finished and now on to the Avastin for a half hour. Then we'll get into the rough stuff after that. For now, more online videos and chatting about vacation and warmer climes.
12:12 PM
And now comes the actual chemo. Which means I'll be out of here by 2:30, relatively early day. I might have mis-titled this post today. Not the craziest of times here.
12:25 PM
We are apparently playing dueling laptop games here though. Posting on walls rather than turning our screens to share. Silly chemo buddy!
12:55 PM
As I expected, it's wiping me out today. Probably something to do with practically no sleep a couple of nights ago while road-tripping home and the barest of naps to recover. Though I did sleep the sleep of the dead on Saturday night. A full nine plus hours without a single wake-up in the night. Perhaps this means lots of napping and catching up on rest early this week. Not a bad thing.
2:30 PM
I actually ate the majority of my breakfast *and* half a sandwich for lunch! I am on top of the food and hydration today. Now whether I want a whit of food for the rest of the day is up for debate.
Just got my 5FU push and they are hooking up my pump now. I think I shall call this session's pump "Oscar." Maybe that will make me hate it just a little bit less.
This also means that the live blogging is done for the day. Yup.... Th-th-that's all folks!
Monday, February 22, 2016
Don't burn the day, away
Another Monday in the chemo chair. Session number two for round number two. I'm feeling the energy being sapped from me as every drop drips from the two plastic bags hanging above my head. It is hard to explain how it feels as there is no particular physical sensation in which to refer. A general physical malaise that starts slowly and then overtakes until I feel completely off-kilter within my own body. No pain, and rarely nausea these rounds. Just a broad sense that something isn't right. And of course it isn't... I'm being actively poisoned. The whole idea of chemotherapy is a little ridiculous. But it is working, and it is the best tool we have to use, and it's a hell of a lot better than it used to be.
So for one day every other week I will sit here without much complaint. I tend to complain more about that stupid pump and the additional 46 hours of constant 5FU chemo (yeah, Fuck U too chemo). Though I do try to keep the griping to minimal levels. After all, it is only three days out of every 14 that I am going through this and really off my game. That's a split of 21% and 79%. In my mind I am rounding that up to 80% of my time is mine and the good days. Because I choose to make them good days. I was driving around in our beautiful momentary spring-like weather this last week and listening to some old Dave Matthews cds. Sometimes a song leaps out at you that you never really noticed before. And so it was with Pig (see video below) during that sunny afternoon.
Some of what captured me:
"Is this not enough, This blessed sip of life. Is it not enough, Staring down at the ground. Oh then complain and pray more from above. Greedy little pig."
"Wash out this tired notion, That the best is yet to come."
"There are bad times, But that's ok, Just look for love in it."
And of course my title for this post, "don't burn the day away."
This writing, even in the middle of the hardest day of it, is my way of positively appropriating the day. Not letting it just entirely burn away. Reclaiming some piece and making it my own. Reaching out virtually to the people I love and taking that in to carry me through the more difficult times. And a reminder to all of you of the impact you make upon me. "We need the light of love in here." I'll make a bargain to shine my love light if you shine back.
I know this can kind of sound like all those corny cliched lines from countless motivational memes. But there can be truth in them, and I honestly believe attitude comes down to choice. I've been complimented many times for being "strong" and "heroic" and it is often a difficult compliment to accept. I don't see myself as being strong; I see myself as taking the only valid road and attitude that suits me. However, I have come to understand that the sunny side of the street is not the only side to choose from and it takes some wherewithal to keep walking. I see the wear and the struggle, and sometimes the defeat, in the patients around me every time I come to the cancer center. All of these people going through their own journey or battle, fighting to keep themselves when so much is taken away. This is a hard thing and can completely overwhelm you. I've had many of those days myself. And it was hard to crawl up away from the easy slide down into depression and apathy. Somehow, through natural neurological wiring and choice, I've found that shadows and cages simply don't suit me.
And so, now that they've unhooked me and attached my best friend for the next couple of days, I'm flying this coop and looking forward to settling in to my home nest for the rest of the day and evening. Adios for now, and don't forget to check out this fabulous song.
Pig, by Dave Matthews Band from Before These Crowded Streets
So for one day every other week I will sit here without much complaint. I tend to complain more about that stupid pump and the additional 46 hours of constant 5FU chemo (yeah, Fuck U too chemo). Though I do try to keep the griping to minimal levels. After all, it is only three days out of every 14 that I am going through this and really off my game. That's a split of 21% and 79%. In my mind I am rounding that up to 80% of my time is mine and the good days. Because I choose to make them good days. I was driving around in our beautiful momentary spring-like weather this last week and listening to some old Dave Matthews cds. Sometimes a song leaps out at you that you never really noticed before. And so it was with Pig (see video below) during that sunny afternoon.
Some of what captured me:
"Is this not enough, This blessed sip of life. Is it not enough, Staring down at the ground. Oh then complain and pray more from above. Greedy little pig."
"Wash out this tired notion, That the best is yet to come."
"There are bad times, But that's ok, Just look for love in it."
And of course my title for this post, "don't burn the day away."
This writing, even in the middle of the hardest day of it, is my way of positively appropriating the day. Not letting it just entirely burn away. Reclaiming some piece and making it my own. Reaching out virtually to the people I love and taking that in to carry me through the more difficult times. And a reminder to all of you of the impact you make upon me. "We need the light of love in here." I'll make a bargain to shine my love light if you shine back.
I know this can kind of sound like all those corny cliched lines from countless motivational memes. But there can be truth in them, and I honestly believe attitude comes down to choice. I've been complimented many times for being "strong" and "heroic" and it is often a difficult compliment to accept. I don't see myself as being strong; I see myself as taking the only valid road and attitude that suits me. However, I have come to understand that the sunny side of the street is not the only side to choose from and it takes some wherewithal to keep walking. I see the wear and the struggle, and sometimes the defeat, in the patients around me every time I come to the cancer center. All of these people going through their own journey or battle, fighting to keep themselves when so much is taken away. This is a hard thing and can completely overwhelm you. I've had many of those days myself. And it was hard to crawl up away from the easy slide down into depression and apathy. Somehow, through natural neurological wiring and choice, I've found that shadows and cages simply don't suit me.
And so, now that they've unhooked me and attached my best friend for the next couple of days, I'm flying this coop and looking forward to settling in to my home nest for the rest of the day and evening. Adios for now, and don't forget to check out this fabulous song.
Pig, by Dave Matthews Band from Before These Crowded Streets
Wednesday, February 10, 2016
Three tomatoes are walking down the street...
Time to do a little catching up.
I had my 12th PET scan last week Monday. Alas and alack all over again... no new superpowers. But the results from the scan were very positive. The two metastasized lung tumors showed positive reaction to the first round of chemotherapy. The left tumor shrank and had reduced uptake of over 50%, almost putting it in a normalized range of metabolic activity. Which means it's almost not worth worrying over. The tumor in my right lung had shrinkage of about 40%, though it is still worth worrying over. But as the FOLFIRI cocktail seems to be doing its job and my bloodwork this Monday was all in positive ranges, we started a fresh 6-session round again this week. I only have a couple more hours before I get the 5-FU pump taken off and that will be the finish of session one.
My medical oncologist was very upbeat in our meeting on Monday. The updated plan for the time being is to (1) do this second round of chemo, (2) have another PET scan and, if the results are similarly positive, then we can (3) do a round of radiation on the lung tumors. The advantage of moving to radiation is that we can then take a break from any treatment for a few months. If we follow this plan and I am reading my calendar correctly, then that means that I should be treatment free by early June. And *that* means I'll be able to truly enjoy the summer - a wedding, couple of camping trips, 50-Year, the beach for a week maybe, Pennsic, possibly abroad to Greece in the late summer. And I am stoked about all the potential of a great summer and fall.
To clarify, and ground everyone a bit, remember that we are not looking at a cure for me. We are controlling the cancer as best we can to give me the best quality of life for as long as possible. And there is still the unknown about how the brain tumors are doing. The radiation we did back in October did cause some shrinkage (and one seems entirely gone), but we won't get an eye in on their progress until my next MRI scan in March.
I, of course, remain persistently hopeful and work hard at staying positive. Optimism may have bitten me in the ass a time, or five, but it's still my favored mindset. There's always so much more new to see and do and converse about; my curiosity continues to drive me relentlessly forward. I may not have gotten the sudden ability to fly, but my soul is a wild, uncaged bird. And, yes, there are bad days. I just choose to keep my focus on the good ones.
I am open to conversations about all of this. I expect I will see many of you in the next few weeks at Val Day, or Gulf War, or personal visits. *This* is my favorite part of the days to come - seeing all my wonderful, loving peeps and basking in the joy of you.
I had my 12th PET scan last week Monday. Alas and alack all over again... no new superpowers. But the results from the scan were very positive. The two metastasized lung tumors showed positive reaction to the first round of chemotherapy. The left tumor shrank and had reduced uptake of over 50%, almost putting it in a normalized range of metabolic activity. Which means it's almost not worth worrying over. The tumor in my right lung had shrinkage of about 40%, though it is still worth worrying over. But as the FOLFIRI cocktail seems to be doing its job and my bloodwork this Monday was all in positive ranges, we started a fresh 6-session round again this week. I only have a couple more hours before I get the 5-FU pump taken off and that will be the finish of session one.
My medical oncologist was very upbeat in our meeting on Monday. The updated plan for the time being is to (1) do this second round of chemo, (2) have another PET scan and, if the results are similarly positive, then we can (3) do a round of radiation on the lung tumors. The advantage of moving to radiation is that we can then take a break from any treatment for a few months. If we follow this plan and I am reading my calendar correctly, then that means that I should be treatment free by early June. And *that* means I'll be able to truly enjoy the summer - a wedding, couple of camping trips, 50-Year, the beach for a week maybe, Pennsic, possibly abroad to Greece in the late summer. And I am stoked about all the potential of a great summer and fall.
To clarify, and ground everyone a bit, remember that we are not looking at a cure for me. We are controlling the cancer as best we can to give me the best quality of life for as long as possible. And there is still the unknown about how the brain tumors are doing. The radiation we did back in October did cause some shrinkage (and one seems entirely gone), but we won't get an eye in on their progress until my next MRI scan in March.
I, of course, remain persistently hopeful and work hard at staying positive. Optimism may have bitten me in the ass a time, or five, but it's still my favored mindset. There's always so much more new to see and do and converse about; my curiosity continues to drive me relentlessly forward. I may not have gotten the sudden ability to fly, but my soul is a wild, uncaged bird. And, yes, there are bad days. I just choose to keep my focus on the good ones.
I am open to conversations about all of this. I expect I will see many of you in the next few weeks at Val Day, or Gulf War, or personal visits. *This* is my favorite part of the days to come - seeing all my wonderful, loving peeps and basking in the joy of you.
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.
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:
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.
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.
Tuesday, December 29, 2015
The Fourth Assiversary
Yesterday marked the fourth year since my initial diagnosis. It was also a chemo day for me. The start of the second half of this first new round. I'll be finished with this round by the end of January and should have some sense of where things stand by mid-February after my next PET scan.
This year has been quite the whirlwind. Like most years it was full of ups and downs, amazing and difficult times; though each hit the extreme ends of the spectrum over these past twelve months. The past three months have been hardly anything but chaos -- full of fear, family, radiation, friends, scans, adventures, chemo, love, and heartbreak. I'd spent the spring and summer in a space of redefinition and centering. They were warm carefree days and cancer was the last thing on my mind, if it crossed it at all, during the long warm months in the center of this year. Languid and lounging were my words to live by. Smiles and laughter were the currency I spent with abandon on all those around me.
The re-diagnosis hit me very hard. Partially because I had just had some of the best months of my life. Partially because I was visioning so many things for my future. Partially because I really thought that I had a chance to beat the odds. I was in equal measure very positive and very scared at that last PET scan. It felt like two years of N.E.D. (no evidence of disease) was just the beginning, but could also be a turning point. Though honestly, there was never a PET scan where I was not filled with some anxiety. It takes many more years than two to crawl out from underneath the shadow of cancer once it has taken place within you.
This year has changed me, multiple times, and there are shifts still to come. I've re-identified myself over and over. And all I am really looking for is to just be Victoria; if I can get my feet on solid enough ground and un-cloud my eyes enough to see Her. And if I can feel that those around me can truly accept me for exactly who She is.
Adaptability has always been a strength of mine. And I have tapped that ability again and again in the latter part of this year. I've had my feet knocked out from underneath me what feels like countless times since the fall began. There have been a lot of days where it has been hard to be the all chipper, all positive gal. I am relearning the lesson of having patience and allowing space for myself. It is so easy for me to give that to others, to give my kindness away. Saving some for me has proven challenging. But the days pass and I get a little better at it each one.
Despite all the challenges and difficulties, I am still determined "to live deep and suck out all the marrow of life." My blogging has been lacking this month because I lived the hell out of December. I had friends visiting me for the first week and a half of the month. Spent the next several days sharing meals and conversations and laughs with lots of my local peeps. I then ran off to New York City for the very first time. What an adventure and grand time it was! I returned with barely enough time to travel to my sister's for a long, laid back and loving Christmas weekend. And now here I am post-chemo and feeling pretty fine all things considered.
For those who look for it, you noticed the lacking in live blogging this chemo session yesterday. I had a wonderful friend with me for my infusion and we were busy looking through NYC pictures and catching up. Perhaps there will be future editions of the live blogging, plenty more sessions to come in future months.
These days before the actual New Year have become the turning of my personal year's wheel. This "assiversary" is my space for reflection and deep consideration of time passed and the time to come. As the new year does come around, I do so hope that your reflections settle on the smiles shared in the past year, in the shine of eyes that love you, on the hugs and touches of friends and family, and on whatever beauty struck you in the world. And I wish you all these things in the year to come.
This year has been quite the whirlwind. Like most years it was full of ups and downs, amazing and difficult times; though each hit the extreme ends of the spectrum over these past twelve months. The past three months have been hardly anything but chaos -- full of fear, family, radiation, friends, scans, adventures, chemo, love, and heartbreak. I'd spent the spring and summer in a space of redefinition and centering. They were warm carefree days and cancer was the last thing on my mind, if it crossed it at all, during the long warm months in the center of this year. Languid and lounging were my words to live by. Smiles and laughter were the currency I spent with abandon on all those around me.
The re-diagnosis hit me very hard. Partially because I had just had some of the best months of my life. Partially because I was visioning so many things for my future. Partially because I really thought that I had a chance to beat the odds. I was in equal measure very positive and very scared at that last PET scan. It felt like two years of N.E.D. (no evidence of disease) was just the beginning, but could also be a turning point. Though honestly, there was never a PET scan where I was not filled with some anxiety. It takes many more years than two to crawl out from underneath the shadow of cancer once it has taken place within you.
This year has changed me, multiple times, and there are shifts still to come. I've re-identified myself over and over. And all I am really looking for is to just be Victoria; if I can get my feet on solid enough ground and un-cloud my eyes enough to see Her. And if I can feel that those around me can truly accept me for exactly who She is.
Adaptability has always been a strength of mine. And I have tapped that ability again and again in the latter part of this year. I've had my feet knocked out from underneath me what feels like countless times since the fall began. There have been a lot of days where it has been hard to be the all chipper, all positive gal. I am relearning the lesson of having patience and allowing space for myself. It is so easy for me to give that to others, to give my kindness away. Saving some for me has proven challenging. But the days pass and I get a little better at it each one.
Despite all the challenges and difficulties, I am still determined "to live deep and suck out all the marrow of life." My blogging has been lacking this month because I lived the hell out of December. I had friends visiting me for the first week and a half of the month. Spent the next several days sharing meals and conversations and laughs with lots of my local peeps. I then ran off to New York City for the very first time. What an adventure and grand time it was! I returned with barely enough time to travel to my sister's for a long, laid back and loving Christmas weekend. And now here I am post-chemo and feeling pretty fine all things considered.
For those who look for it, you noticed the lacking in live blogging this chemo session yesterday. I had a wonderful friend with me for my infusion and we were busy looking through NYC pictures and catching up. Perhaps there will be future editions of the live blogging, plenty more sessions to come in future months.
These days before the actual New Year have become the turning of my personal year's wheel. This "assiversary" is my space for reflection and deep consideration of time passed and the time to come. As the new year does come around, I do so hope that your reflections settle on the smiles shared in the past year, in the shine of eyes that love you, on the hugs and touches of friends and family, and on whatever beauty struck you in the world. And I wish you all these things in the year to come.
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