Today (yesterday, since
it's now past midnight) I completed my ten-day radiation course on my spine. It
was bittersweet, much like last time. As I sit here awake, trying to soothe my
burnt esophagus with cold chocolate almond milk and dilauded (poor thing got
caught in the crossfire), I am missing the wonderful staff there. I even miss
Seymour a little bit. My long-time readers might remember that Seymour is the
name I gave the radiation machine.
"Feed me Seymour, feed me now..." ~Little Shop of Horrors
One of the techs was
from last time, and she remembered me which had me floored, since I have
breasts (fake ones, but still) and hair now. Plus, that was a few YEARS ago.
Jesse says I'm a memorable person, but that's been a difficult one for me to grasp
with my history of being an ugly duckling and feeling invisible most of my
life. It was good to see her again, despite the circumstances, and the other
techs were amazing as well. I'm really going to miss them, but mostly I’ll miss
Dr. Siddiqui. Our interactions have been brief, but very meaningful. He’s not
just a good doctor, but a genuinely good human being with a lovely soul and we
have the best conversations! I’m sure there will be a checkup or two with him
at some point. It will be nice to get to say hello.
There is a stereo in the
radiation room, which I could hook my phone into. This time around, I was drawn
to Wardruna. The drums, the chants, the sounds of Earth, the magic of their
songs…this is what I needed as Seymour rotated his great head around my body
sending radiation from beneath and then above me. Where I suppose many would
feel weak and drained by the experience, I felt empowered. I felt alive. Music
has always been magic to me. While I am in no way religious, I consider myself
to be a deeply spiritual person, and music is one of the things my soul
rejoices in the most. My time with Seymour and the techs became an almost
spiritual practice with Wardruna guiding the ceremony. It was a strange sort of
beautiful. What was strange about today was that one song in particular, my
phone chose to play twice. This has never happened before, so naturally I took
it as something I need to pay attention to. I believe deeply in the little
messages the universe sneaks in. The lyrics are all in Norse, so I looked up
the translation of this specific song. I’m not sure how it applies to my
situation other than the fact that I believe in dwarves and other fair-folk. “Warrior”
is also a title given to me by many, and I’m learning to embrace it. And hey,
who doesn’t love to party with a little ale, huh? I shall have to delve deeper
into Norse studies, which I already have an interest in.
“Beneath dwarfs of the hall
Swells sound to its sides
Between table rows
Dance of fire passing for the vent
Flickers in eyes,
They steal glances at skirts
Where warriors sit
cheerful in the beer-hall
Drinking toasts from the ale-bowls
the bard strikes his strings
The dice its silent chant
Your fortune and fate
Where warriors sit
cheerful in the beer-hall
Pertho is a bottomless source
of fun and games
Where warriors sit
cheerful in the beer-hall”
Even though I’ve only
just returned, I chose not to attend any Krav Maga training this week. I had
forgotten how very exhausting radiation is, and with regular pain meds on top
of that I was absolutely wiped. I’m learning to listen to my body and sometimes
it tells me I need to rest. So rest, I did…sort of. There has also been a
frenzy of reorganizing and moving furniture in the apartment. I have also been
busying myself with delving fully and deeply into the study and practice of
using the Law of Attraction as introduced to me in “The Secret” documentary and a couple of the corresponding books.
So far, it seems that the most important part of getting the Law of Attraction
to work in my favor means continuously practicing and expressing gratitude. And
you know what? Call me crazy here, but…it seems to be working! The more
grateful I am for things, the
more things seem to be going my way! Am I “out of the woods” yet? Does it
matter? I’m on a journey, an adventure! So, I have stage 4 metastatic breast
cancer. So, I have PTSD. So what! Those
things are not who I am! Most of my life has felt like a complete shit-show, but
that doesn’t matter anymore. In fact, I’m grateful for it. I’m grateful for the
lessons, as they have served to temper my steel. I am finally accepting the fact that I am an incredibly resilient
person and one of the strongest you might meet. This doesn’t mean I never
crumble. Strong people crumble, and then we
get back up. I have always gotten back up and I always will. This time,
added to my quiver is the arrow of gratitude to shoot into the darkness of
doubt and fear. I am ready, I am getting up, I am grateful, and I am fierce.
Poor hand positioning here, but this was after three months of no Krav and two weeks in the hospital
It was a year ago, today that I sat in a small room in my
oncologist’s office sobbing, as I was told there is no cure. The horrible news
I had received in the emergency room just a couple of nights before was confirmed.
My cancer was back and I was now stage four. Jesse and Violet were in the
waiting room as I shook with horror and near-disbelief. How could this happen?
I was in remission! I had been cancer-free for over three years! I was better!
Since then, I’ve learned a lot about breast cancer and even more about myself.
This past year has been nothing short of tumultuous. Much of
it has been documented herein. I had originally intended to write a book, but
inspiration has been lacking as of late. Right now, I’m just trying to get
through each day, replacing negative with positive, retraining my brain to
think differently. I’ve been working on a new diet, one that is supposed to
help combat the cancer, but with Jesse out of work, I haven’t been able to
afford it. I know that’s a temporary thing (as everything in life is temporary,
even life itself), so I’m taking it to mean that until that is resolved, I just
need to work harder on my positive thinking. A big part of that has been about
returning to Krav Maga. I believe I missed about three months, which was a devastating
blow to my mental health. My PTSD began to rear its ugly head and every day was
a fight with my own psyche. While I knew that creating and maintaining a
positive mental space is essential to my survival, when physical pain becomes a
daily occurrence, it’s a lot more work and you fall down a lot more often.
Since the cancer has grown in its existing locations and spread to my
intestines, I’ve had to rely on heavy narcotics daily and I started radiation
on my spine just last Thursday. I am currently in the middle of my week off
from chemotherapy, so the sickness hasn’t been as severe. Mornings are still
hard, but I’ve been playing “The Secret” on Netflix almost daily and that helps
me turn things around most of the time.
Last Wednesday evening was my return to Krav. Mr. Eric was
awesome as usual, and since the class was odd, I had two partners and I adore
them both. My instructors, classmates, and East West Martial Arts in general,
have all been extremely supportive and encouraging in all of this. It was like
returning home. There are more limits to what I can do than there were before
my spine started hurting, but radiation will knock that down and training
regularly will build me back up. I need it. Krav Maga has become one of the
most powerful tools I have against depression and PTSD. I’ve noticed that the
longer I go without, the worse everything else seems to get. When I go regularly,
I can function. And so, I have resolved not to allow that kind of absence
again. I can’t afford it, though I have scaled back to basic classes until my
spine has improved. Mr. Eric agrees that it’s a good idea.
I’m in an odd place, mentally and emotionally. As I learn to
balance my energies and build positive thoughts, I have been experiencing a
sort of yo-yo effect. There’s a lot of back and forth almost daily, but I know
that with practice and mindfulness, it will get easier. Terrible things are
happening in the world and in America lately (insert rant about the devastating
election and its results here), which weighs heavy on empaths like myself. We
feel EVERYTHING and when explosive emotions happen on such a large scale, it’s
like being bombarded from all sides and it gets so very heavy. I’ve had to
really watch that. It can destroy my entire day if I’m not mindful. I also lost
a “friend” recently because he/she did not agree with a choice I made regarding
the use of my daughter’s image on a t-shirt. That stung badly until I could
absorb the situation completely and come to terms with the fact that this
person simply wasn’t who I had raised him/her up to be in my head. Then I could
analyze it for what it was and realize that the problem was not with me but
with the other person and that he/she isn’t worth that kind of upset. I cannot
afford to let the judgments of others impact my happiness. As an empath, this
is vital to my survival. Even further, I do not intend to just survive. I
intend to thrive.
It’s amazing how distant and yet how close August still
feels. It’s amazing how much can transpire in such a short time. The theme of summer
was buzzing in preparation for the Faerieworlds event that Jesse and I attended
last summer and had been looking forward to all year. I had been counting down
the months, planning my outfits, giggling in anticipation. This year, we got to
camp so I had much to look forward to. The best part was the plans we had to
grab Violet for the last day of the event so she too could experience the
faerie magic I had been wanting to show her. Finally, the day arrived for us to
pack our gear into Jesse’s Jeep Wrangler and head into another realm.
Travel and arrival took a little longer than expected, but
we still arrived in decent time. I had purchased a 12-man tent with 3 rooms
(yes, just for the two of us), and was excited to set up and get dressed for
fun. Jesse and I both opened the tent carefully, unpacked every piece, and
assembled it. Once it was together, we saw that the rain cover and room
dividers were missing. We checked inside to look around. Everything was laid
out and stretched flat, with no sight of the missing items. Naturally, I was
beyond annoyed. I knew we should have done a test-pitch before we needed it,
but it was too late now. Both of us feeling irritated, we decided to find a
store in the nearest town where we could at least acquire a tarp for the
weekend. I would have to write to the tent company later to see about the
missing parts. I was not about to let the weekend spoil over something so
silly!
We got back in the Jeep, I turned on my GPS, and we looked
for a store. Per my map, there was one about 8.5 miles away or so.
GPS was wrong.
I’m sure we had gone well over ten miles on very curvy, very
wet, forest road under sprinkle of continuous rain when we realized that my GPS
might not have been totally honest with us. We continued onward, Jesse driving
slowly, enjoying the scenery. Then, after several sharp turns, we were met with
another. This time, it was too sharp and we couldn’t stop.
Some of it is blurry, but I clearly remember the slide
toward the edge of the road and the bump. I remember Jesse slamming the breaks.
I remember going over the edge. I remember screaming. Down, down, down, we
crashed. Through trees, over rock and rubble, the force seemed unstoppable. We
tipped onto the driver’s side momentarily, shocking me into flashbacks of how
my dear friend Andrew looked after the accident that had scalped him and almost
took his life six years ago. I thought about Violet. I thought about my cancer
and how it couldn’t end like this. It just couldn’t.
And then we crashed to a halt.
There we were, after a good 50 foot-or-so, very steep slide.
Upright. Unharmed. Alive.
Alive.
I can tell you right now, that in any other vehicle, we
would not have made it. As we sat there in shock for a moment, broken beer
bottles soaked the back seat and some of our belongings. I looked back to see
the side where Violet normally sits crunched. I looked at Jesse. He was okay.
Dazed, we climbed from the wreckage and began the steep climb back to the road
between my fits of shaking and frantic tears. When we reached the top, even
though I am now a non-smoker, we both went for the pack, no questions asked. When
Jesse made mention of being glad that Violet was not with us, I lost it.
Something terrible had happened, but it could have very easily been so much
worse. My girl was safe with her father and there I was with Jesse at the side
of a lonely and dangerous road, feeling everything imaginable, including the
presence of George. My baby brother was watching out for us, and perhaps
someone else too.
I called 911 and help was sent our way. As we paced, shook,
cried, hugged, babbled and marveled at the few cars who passed us without even
stopping to see if we were okay (it was obvious that something terrible was
happening) I guiltlessly sucked down one cigarette after another half
in-denial. I was determined to have my Faerieworlds weekend. This was not going
to ruin anything. A police officer showed up, and then a tow company. Since
Jesse only had liability insurance, we had to fork out $250 for the tow. Ouch.
It took a bit of work, and resulted in the tow truck needing a bit of its own
servicing. The Jeep’s hard top was crunched on the rear driver’s side and the
front passenger tire was thrashed. We put on the spare and…the damn thing still
worked!!! Yes, we climbed, walked, and then DROVE from an accident that I was
almost certain was going to claim us.
I feel that now it is fair to say that whereas before Jesse
and I were indifferent about Jeeps in general, we are now staunch Jeep
enthusiasts.
We were cold, shaken, shocked, and ready to just get back to
the weekend. We figured we deserved to enjoy it after escaping the way we did.
We traveled the rest of the way to the store we needed (it was more like 20
miles…THANKS, GPS). We made our purchases, including an extra tarp and duct
tape to cover the top of the Jeep and slowly…very, very slowly…made our way
back along the winding road, vowing never to come that way again.
Photos by Jesse Lanier
While I had initially been adamant about participating in
the opening spiral dance that I had missed previously, I was now okay with just
being there. We made our way back to our partially set-up tent and I stepped
inside.
Now remember, the missing pieces that had forced our
perilous detour had ben NOWHERE to be seen inside or outside the tent. Upon
stepping inside to assess the situation, the flat, stretched floor we had left
behind was now raised at the center. We lifted the tent and reached beneath,
pulling out…you guessed it. The missing pieces were RIGHT THERE. RIGHT FUCKING
THERE!!! They had NOT been there before we left. That tent was pitched, tight,
and flat. There was nothing…NOTHING to indicate anything beneath it. We had set
it up and walked in it. It was flat. There was nothing. And yet, here we were.
Nothing had become SOMETHING.
We enjoyed the weekend, though I had been over enthusiastic
in my initial celebrations of you know, not dying, and drank too much. This
caused me to spend most of Saturday in the tent, feeling like crap. Then back
issues from the accident surfaced and I had to spend some time in the medic
tent getting fluids and morphine. Oops. Lesson learned. I was glad that I got
to enjoy my favorite performers of the Weekend. We had seen Wardruna the
previous year and even attended Einar Selvik’s seminars on runes and things of
the ancient Norse world. This year we missed out on the seminars, but were
enthusiastically present for their second-ever US performance. They delivered
last year. This year, they outdid themselves.
Photo by Jesse Lanier
Sunday was special to me because Violet got to be there. We
headed back home that morning to meet with her father and get her ready. We had
him follow us in his vehicle with Violet (since the Jeep is not safe for her
until we get it fixed) and paid his admission. Violet was free. I got to show
my girl the world of Faerie as can only be done in such an enchanted place. I
even got to introduce her to Einar. I had hoped to meet Lindy-Fay Hella as
well, but sadly missed out.
My little faerie and I danced by the stage to Delhi 2
Dublin. I bought her a flower hat and matching wand for her faerie costume. She
explored with her dad. Jesse took pictures of us together. Then she went home
and I was left with a mixture of gratitude for the dances we shared and a
longing for more magic with my girl. The weekend had not been perfect, but it
had perfect moments. We left before the last act and wearily made our way home
to recover and rebuild.
Photos by Jesse Lanier
The back pain persisted and since my spine is one of the
places my cancer has taken up residence, I felt it would be wise to see my
oncologist and request some scans. I had also started with a new therapist and
felt seeing her would be beneficial as well. Since the beginning of summer, I
had been experiencing some disturbing thoughts and emotions. Things from my
upbringing I thought I’d reconciled were surfacing in strange and painful ways
and I had also begun to relive the traumas of the summer before…the dark
summer. The one I almost didn’t survive. Suddenly I found myself in mental and
emotional chaos and I couldn’t understand why. My car wasn’t working and
Jesse’s was now no longer fit to transport Violet, so I couldn’t get her to
karate or myself to Krav Maga. The apartment was turning into a trap I couldn’t
escape from. So many old traumas were surfacing and my coping mechanisms were
beginning to fail. I couldn’t understand it.
What was triggering all this madness? Part of it I know was
from Jesse’s Narcissistic ex refusing to leave him alone. After a decade of
suffering and having no access to his own friends or family, he had become
unable to cut her off. Being a survivor of abuse myself, this was beginning to
trigger other things in me on top of the rage I already felt for what she had
done to him. Her continued manipulation of him bore into my psyche like a
white-hot drill bit. I had taken the stance of not telling him he couldn’t talk
to her as I do not believe in controlling others, even though I had tried
multiple times to explain to him that you cannot recover from narcissistic
abuse if you don’t sever ties with your abuser. I tried to help him understand
how dangerous talking to her was, but he only got defensive. I understood as
best I could, but Narcissistic Personality Disorder is dangerous. Stockholm
Syndrome is very real and very ugly. My reasoning and explanations fell on deaf
ears, or so it seemed. Finally, on one of my many phone calls from him during
work (the wonderful man called me on every break and every lunch just to talk),
I was in a bad downward spiral. My mind and emotions were in complete chaos. I
felt like I was unraveling. He sounded worried and helpless. He said he wanted
to help me but he didn’t know how. So, I finally had to say it. I told him that
it would help me if he would stop talking to his ex. I didn’t want to make any
ultimatums. I didn’t want to make demands. I just couldn’t handle knowing that
the person who damn near destroyed the man I love wasn’t going to go away. I
couldn’t handle knowing that she was still using him as an energy source and he
didn’t see it. I was going mad. I broke down. I let him know that I couldn’t
take it.
Later that day, he informed me that he had severed ties.
Yes, I believe him. I felt a rush of immense relief…and guilt. While I knew
that things were going to get better, part of me felt like a horrible and
manipulative person. I thanked him and apologized to him profusely all at once.
I told him why I felt guilty and I promised him that he will finally start to
heal for good. So far, it seems I was right. He is less guarded. He is learning
how to be himself again, and oh how beautiful he is! I just hope I don’t get in
too much trouble for this post. I might. Almost no one knows the truth. She is the
textbook Narcissist: very popular and adored. No one knows what she is and few
would believe me if I told them. I fear for her current partner who is already
showing signs of her abuse, but there is nothing I can do. I didn’t write this to
“out” her. I’m writing it for my own healing and while I am not interested in
slander, I won’t go out of my way to protect her cover either (though I doubt
any of her acolytes will see this anyway). I just hope her current victim gets
some help before it’s too late. Her psychological abuse had left Jesse a shell when he first came back into my life. One giant PTSD-triggering issue was now resolved (the diagnosis is
still unofficial, but highly likely). I was already breathing more easily. Now
I could start to focus on why this was happening and take steps to get my
mental health under control, as well as make sure I was doing okay physically.
I got in to see my plastic surgeon first to make sure that
none of his work had been damaged in the accident. It is holding up fine, thank
goodness, and we scheduled for my next surgery just to even things up a little
(one implant is too big and I need a few more fat injections on the other
side). Things seemed good there, and it’s always wonderful to see Dr. Gabriel
and his staff. Then I saw my Oncologist, Dr. Smith. She agreed that it was time
for scans anyway, so we set those up and I went in. I wasn’t terribly worried
about the results. I just wanted to be sure my back was okay. I got more
information than I wanted with the results.
The cancer has grown in the places it already was and has
now moved into my abdomen.
I wasn’t ready for that. I wasn’t ready to learn that it was
time to go back on chemotherapy. I couldn’t be on the losing side. I couldn’t
let it get the upper-hand. No. Just, no. It was too much. I began to feel that
same old fear and despair creep into my veins, sharp and icy. No. Please, no. I
think I lost my mind for a while. My Facebook posts were dark and angry. I
began to spew my turmoil all over social media, unable to stop myself. I’m sure
I put quite a few people off.
Bitterly, I accepted the situation, and I started my
chemotherapy pills. Then a couple of weeks ago, I found myself being hauled off
to the hospital via ambulance, unable to breathe, with a plummeting pulse.
No. Not this again. No, please. No.
I’ve lost track of how long exactly, but over just about a
two-week period (I believe), I spent less than four days at home. I’d be hauled
in, stay one or two nights, come home for a day or so, then wake up gasping for
air and collapsing, having to do it all again. The worst morning was the one in
which Violet had to bear witness to it. Fortunately, she didn’t seem to
understand enough to be afraid or sad. I just didn’t want her to see it. That
was my last trip in and it was bad. What I remember was very unpleasant and
terrifying. After hours in and out of consciousness in the ER, I was placed in
ICU for a night (my second ICU stay in this series of visits). By next morning
I was doing well enough that they felt I could be in the general building. So,
I essentially lived at the hospital for a couple of weeks. My friend Sarah, who
is mine and Daryll’s chosen guardian for Violet in the worst-case-scenario and
mother to Violet’s best friend, stepped in to care for her. Daryll’s diabetes
has had him unable to care for her for more than a night or so at a time over
the past few weeks. I’m glad Sarah was there. I’m glad my baby was in good
hands.
Photos from my Instagram
During all of this, I grew more and more depressed about
being unable to be with Violet and be at home with Jesse. While I was
struggling with my emotions, his job fired him for taking time away to care for
me. Yes, that is why they did it and his boss even stated as much publicly
under one of Jesse’s Facebook posts about getting fired. Some other stuff happened
there. We may be considering whether we can take legal action, but right now
things are still settling.
Once I was finally able to be home for real, it took a while
to get myself back. Today marks one week and one day out of the hospital. I was
in a dark place emotionally, and cried frequently over missing Violet since we
decided not to have her home until we were sure I was stable. Finally, Jesse
and I took a friend’s advice and watched “The Secret” on Netflix. I was just
what I needed. It’s time to end the brooding and start building positive energy
back up. It’s time to be hopeful and happy. Does it take work? Oh yes. Yes it
does. I am determined, though. Does this mean I’m not allowed to have bad days?
Of course not! However, the time has come to focus, really focus, on building
an overall better emotional state. Attitude is everything and I shall remain
mindful of mine. It helps tremendously that as of today, my car is up and
running again. This means I can get Violet back to Karate and myself back to
Krav Maga. I’ve weathered the shitstorm with Jesse by my side. My babygirl is home
with me again. It’s like having my heart returned to me after a long absence.
Now it’s time to relax into the flow of things getting better. Sometimes, you
just have to take a few detours, that’s all.
“I’ll never live the
life that wakes me in the night.” ~Fiona Apple
I was going to be a
psychologist. I was going to major in psychology and double-minor in sociology
and women's studies. Every time I've gone back to school to better myself, I've
ended up with cancer. Do you know how close I am to having my associate's
degree? It's ridiculous. We’re talking maybe just over one quarter of classes
at the most (but probably less) and I’m done. You know what the biggest hurdle
is? Math. Fucking math. I have one math class left and it was a miracle I made
it that far. Last year, before I knew my cancer was metastasizing, I was taking
a statistics class (since I was sure there was no way I could handle
college-level algebra and stats is more geared toward my chosen field anyhow)
and I BOMBED it. As in, I did not understand it at all. I just couldn’t do it.
Math has always been extremely difficult for me, but this…this was a special
kind of impossible.
My brain simply does
not work as well as it used to. The medical industry is only just scratching
the surface of what cancer treatment does to the functionality of the mind, but
I can tell you from experience that the effects of “chemo brain” are real and
they are devastating. The thing is, when it’s a subject more directly related
to my chosen areas of study, I excel. I don’t like math. I’ve never liked math.
It’s difficult for me. Humanities are my forte. My brain is not mathematical.
It’s humanitarian. Its analytical capabilities eat human behavior and social
sciences up like candy. Math? Hard science? No.
It has long been a
great frustration of mine that in order to attend a four-year college to pursue
my heart’s chosen fields, I have to first muddle through community college,
taking courses that do not relate to those fields at all. I am already in debt up
to my ass due to having to take classes I have no interest in. It’s bullshit.
And now, I’m looking into having my student debt forgiven (which requires some
serious hoop-jumping) because I have a “terminal” diagnosis, even though I do
not plan on dying anytime soon. If I succeed at that task, what happens? Am I
no longer allowed to pursue my education at all? Is it even worth pondering? If
I wanted to take out more student loans to finish, I’d first have to pay to
retake the failed math class out of pocket and pass it anyway, since I’m out of
appeals. I could try to raise the money to pay for said class but again…I’d
have to actually PASS it. I just don’t know if my mind will do that, even with
tutoring. I’m angry. I’m frustrated. I’m sick of the whole system.
Today I finalized my divorce. Something huge that has
been needing to end finally ended. There have been a lot of big endings for me
over the past few years. There have been some beginnings as well, but here I am
with cancer for the third fucking time, still wondering when my life, my REAL
life is going to begin. It’s not like I haven’t been working for it. It’s not
like I haven’t been trying like Hell. And honestly, I’m not trying to sound
like a victim here. I’m just trying to figure out what the fuck happened and
how the fuck I can get around it. Why can’t I have the same opportunities so
many others have to build a good life if I’m willing to work for it? Why does
tragedy and disease have to continuously keep these things out of my grasp? I
don’t want to live on social security and in poverty for the rest of my life! I
don’t want to just not die. I want to LIVE, really fucking LIVE! I want to
create my destiny, the destiny I want and deserve. Destiny, not fate. Not this
fate. It’s making me feel like my existence is a waste and I don’t want to feel
that way.
I want to pursue my academic dreams. I want more than
just an associate’s degree. I want more than just a bachelor’s degree. I want a
masters, maybe multiple masters. Maybe I want to follow this shit all the way
to my doctorate. But my brain doesn’t work. It won’t do the stupid math I am
told I have to do just to earn the right to go to school for what I really
want.
I want to live a life of purpose and joy. I want a
house and a yard. I want to be a part-time (or maybe full-time) Krav Maga instructor,
but I can’t even take the belt tests until I get this damn cancer the fuck out
of my body. I want to be the mother that Violet deserves. I want to see the
world, starting by returning home to Australia. I want to become a Reiki
master. I want to pursue my art and writing without being continuously buried under
bills, chores, and stress. I want to know what life is like when you can afford
vacations and shop for food without worrying if I’ll have enough to feed my household
for the month. Did I say it yet? I think I did, but I’ll say it again. I WANT
TO FUCKING LIVE!!!
I can’t remember ever being truly afraid of death. There are
methods of dying which horrify me a bit, but as for the state of
being no longer alive, not so scary. There was even a dark time in my life in
which I was rushing toward it. Don’t get me wrong. It has long been my wish for
an extensive and happy life, but I also accept that death is something we all
experience eventually.
Somewhere between treatments, the cancer snuck back into my
lung. As far as I know, my tumor index is still much lower than it was in the
beginning, but I don’t know what this means number-wise. Really, I don’t care
what it means at all in numbers or in words. I just know that it’s trying to
get the best of me. It started as a silent invader and is still as stealthy as
ever. And for the first time, fear is creeping in along with it. Even as I
drink a mug of tomato soup and type at my computer in my warm apartment, a line
of ice is making its way down my spine and there’s a paranoid tingling at the
base of my skull.
Just the other evening I had several moments in which I
almost lost my composure in front of Violet. I felt as if I sat too still, I
would begin to shake and tears were already beginning to stir. I had to leave
the room to ensure that she wouldn’t see me in distress. I was hoping I would
be able to shrug it off by the next morning, but even today, it clings
tenaciously to the back of my psyche, springing forth when least expected. It
happened again today as I was driving to my Krav Maga class. Violet was in her
car seat and I was listening to Wardruna on the stereo. I had enough
distractions to keep it from becoming overwhelming. It was more like a
continuous dreaded thought peeking out behind my eyes. Even now, I feel it
sending its reminders, as if it wants me to know it’s watching me back.
Now this in no way means I’m giving up. And it doesn’t mean
that I’m accepting the diagnosis as “no cure.” It just means that for the first
time, I can see how formidable this thing can be. I’m feeling its presence as
if I’m being possessed by a malevolent entity. Somewhere in all of this, it
began to feel like something sentient. Its attempt at takeover is purely
hostile and destructive and it’s grinning at me. Mocking me. It wants to win. I
won’t let it. I can’t let it; but for the first time, I’m absolutely terrified.
I was already done with today when my feet swung off the bed
and the right one landed right in cold, squishy cat diarrhea. Violet had been
the one to come in and wake me with much persistence and I had to yell at her
to move out of my way as I hopped to the bathroom to rinse it off in the sink.
I would have used the bathtub, but it’s slightly clogged and takes too long to
drain. The rest of the morning was no picnic. As I struggled to wake up enough
to function, Violet pawed at me, making her usual demands. I got her a bowl of
cereal and curled up on the sofa for a glorious few minutes. I’ve been dealing
with an obnoxious cough which causes a violent stabbing pain in the pinched
nerve that’s in my back. Needless to say, I have not been getting restful sleep.
The time came for me to shower and get ready for the day,
which had me stepping in even more cat diarrhea (Jesse’s cat has been terribly
ill, poor thing) and scrambling for something to wear with Violet still
pestering me for things I can’t deliver at every turn. I barely got both of us
ready in time to get her to the bus for school, then made my way back up to the
apartment where I was greeted by a living room filled with clutter and a
mountain of dishes in the kitchen. My heart sank to see it. I was almost caught
up on things before this cough and back pain started. Now it’s almost back to
where it was and Jesse has been exhausted from work whilst he adjusts to his
new early schedule. So, I get to start again and hopefully, I’ll be able to get
this place completed before something happens to cause another backslide. I
haven’t even touched Violet’s room. The bathroom and our bedroom are atrocious
and there is a giant pile of cardboard by the dining table that needs to go
out.
As I’ve been juggling housework, Violet, endless errands,
and all the fun (not fun) surprises that life keeps pitching my way, the
frustration that I already feel has worsened by something else that has been
eating at me for a while now. Some of my friends are angry with me. One even
called me out. It seems, that I’m not the friend some people want or need me to
be. I’ve been accused of not meeting my end of the required time and attention
needed to maintain said friendships. I’ve been accused of not making the
effort, of not placing enough importance on being a proactive friend and only
making contact when I need something. Fucking ouch.
That last one isn’t entirely true. It came out of a
misunderstanding and miscommunication. I tried to convey something that came
out wrong, and well…there was that. As for the rest of it? Fine. Sure. It’s true.
But let me tell you WHY it’s true.
Now first, let me be clear that the feelings behind such
statements aren’t necessarily wrong. You need what you need and if you need a
friend to meet you exactly halfway in order to maintain the friendship, well…that’s
what you need. There’s nothing wrong with that, but here’s the thing; I don’t
have it to give. It’s not that I don’t want to be the friend that people need.
I do. I do so much, it has caused some serious emotional upset and self-doubt.
After a falling out with one friend in particular, I spent hours in a crumpled
mess of tears, thinking that maybe I’m just a shitty person. It was agony and
it lasted for weeks. Hell, I still feel it. There’s a part of me that still
wonders if I just suck as a human being, but that’s what a lifetime of low
self-esteem and social anxiety will do to you.
Then I remember all that’s on my plate. Even with knowledge
of my situation, I think that sometimes people don’t quite grasp the magnitude
of it. Hell, even I forget how tough I’ve got it at times. I look great most of
the time when people see me. I do Krav Maga (though not nearly as often as I
used to), which is one Hell of a workout. I go to see bands with Jesse when we
have the money. When I do get together with friends, I often seem fine. Here’s
what people don’t see:
I’m exhausted all day, every day. Some days I’m just less
exhausted than others.
I have some sort of physical discomfort almost all the time,
whether it’s my bad teeth, or my bad back, or a screaming tension headache (I
had to go to the E.R. for my head not too long ago).
I have been fighting a seemingly futile battle against my
own apartment, trying to clear out and organize years and years of stuff piling
up, and trying to catch up on the chores that I miss when I’m too sick to do
them.
I have a very busy four-year-old who demands a ridiculous
amount of attention. Even though I love her more than anything, she exhausts and
tests me every day.
I’m all over the place. I have to get Violet on and off the
school bus every day. Mondays and Wednesdays, I have to get her to her karate
class and then get home in time to do some cleaning and make dinner so I can go
to Krav Maga (which I have missed so much of lately due to all the other shit I
have to deal with).
My car is in serious need of help, and I can no longer drive
it more than a few short miles at a time, so I have to wait to do a lot of
things until Jesse is home from work.
The biggest thing though, lest people forget…I HAVE CANCER!
Fucking cancer, people!!! I may look healthy, but how healthy can I possibly be
with stage FOUR fucking cancer??? Just imagine how much worse it would be if I
didn’t have my daughter, Jesse, and Krav Maga to help drive me to continue. All
the things above would certainly keep most people pretty busy, but doing it on
top of something that is actively trying to kill me seems damn impossible some
days. Yes, it’s diminished significantly, and yes, I try to remain as active as
possible, but I haven’t beaten it yet, and this shit takes its toll. I still
haven’t fully recovered from my last bout and I got slammed with this.
People are killed by this every day. Western Medicine has
given me a death sentence. I’m choosing not to accept that sentence, but it
takes a lot of work and determination. I had to leave some Facebook support
groups because the women there were either dying or talking about how much time
they have before they die. I couldn’t do it. I couldn’t handle all that death. Learning
how to live can be difficult. Learning how to live and beat a “terminal”
illness while you’re at it, well how easy is that? It’s not. It’s not easy at
all. I’m up against odds that most people say are impossible. Even with the
progress I’ve made, my oncologist (who is absolutely wonderful, don’t get me
wrong) is still counting on the likelihood of this eventually taking me out. So
how much time and energy do you suppose it takes to disagree with that and make
good on what I propose to do, which is live? How much do you think that takes
out of me? How much energy and constant mindfulness do you think goes into
defying those kinds of odds?
So if I’m not the friend you need, then I’m sorry. I truly
am sorry. As I said before, I just don’t have it to give. It doesn’t make me
right, and it doesn’t make you wrong. It just is what it is. People talk about
not wasting time with someone who treats you like an option instead of a
priority. Well, if you need to be a priority, find someone who has it
available. Right now, my priorities are with raising my daughter, loving my
man, making my home a safe and peaceful place, and NOT DYING. As much as I wish
I could give more, as much as it hurts me to my core, I just can’t. If this
means people are going to walk out of my life, then that’s what it means. Go do
what’s best for you. Of course it hurts, but I’ve got to focus on getting
better. I’ve got to focus on my immediate surroundings if I want to survive…and
I do want to survive. I don’t expect everyone to understand. It’s a lot to take
in. For those who can handle me at my limited capacity, thank you. I know it
can be difficult. For those who can’t, well I wish you the best. Maybe years down
the road, I can be what you need, but not now. Not today. It doesn’t mean I don’t
love you (otherwise it wouldn’t hurt so much). It just means I can’t act on
that love in the way you need me to.
It’s been such a whirlwind. I’ve had no time for writing and
it’s been eating at me. Jesse is living with me now, and it’s been good so far,
even though the apartment is largely in disarray. He lost his job in January
and just started a good one this week. With all the chaos of my life, I chose
to leave my wonderful job to focus on getting better, being a mom, and my
creative pursuits. It’s time for some serious self-care. It’s time to be who
and what I truly am, and to unearth the parts that have been sleeping.
Things have changed with the cancer, too. My tumor index
began to slowly go down with oral chemotherapy. I started taking Rick Simpson
Oil. If you don’t know what that is, I highly recommend looking into it. Even
though it was going down, it was so slow and I was growing so tired of the
fluid overwhelming my lung and having to have it drained via thoracentesis. At
the end of January, I believe it was, the procedure caused my lung to collapse,
which lead to a fun-filled, dilauded-enhanced stay in the hospital. Gradually,
since the beginning of this, the need to have this done became less and less
frequent. Still, it seemed like it was never going to speed up, and as is the
way with chemotherapy, I was getting so weak and so sick.
I don’t bring it up very often, but I have been a Reike
healer for quite a few years, though I maintained level 1 and primarily did
self-healing for that time. I would even go long periods without using it at
all. Well, I finally decided that you can have cancer and still use Reike, so
in March I attended a four-day retreat to complete my Reike 2 training. I had
recently received another call saying that the tumors had gone down again; very
slightly. I was also toward the end of my two-week chemotherapy cycle, and I
was weak and tired. But I went.
I won’t share the details of Reike training, as it’s a lot
to try to fit into a blog. For those who don’t know what it is, in short: Reike
is a Japanese form of meditation that requires training and mentorship. It
promotes physical, emotional, and psychological health. It strengthens the
mind-body-spirit connection, and is even used in some U.S. hospitals.
The retreat was amazing. Even though I had to excuse myself
a few times to go and sleep in my little cabin, I got so much out of it. I
could feel my Phoenix Fire beginning to spark. It ended on a Sunday, and the
following Thursday I had a CT scan to get a better look at the tumors. Just a
few days after that, I got a call from my oncologist’s office. I was told that
the scan showed no evidence of disease in my lung, and everywhere else had
diminished drastically, though it was still in multiple places. Jesse was
sitting with me at the dining room table at his father’s house when this news
came to me. I got off the phone and cried the first genuinely happy tears I can
remember in a long time. I’ve been taken off the chemo and am being placed on hormone
therapies instead.
Of course my Krav Maga has suffered due to all of this, but
I still go whenever I can. That’s the hard part. That’s where I get depressed.
I miss training five days a week. I miss having that drive and ability. I miss
being able to do fall-breaks on my back, then immediately jumping up to strike
the pads. I keep hoping that as I improve, I can get my class count back up,
though I am not allowed to do the belt tests until my spine recovers. I keep
telling myself that until I can advance, I’ll just have to become the most
badass yellow belt I can be. Now…to actually get to class.
Some days the uncertainty of everything gets to me.
Everything is so up in the air with no signs of landing anytime soon. I’m so
glad I have Jesse here now. When I’m floating away or lost in a panic, he has a
miraculous way of grounding me. Of course he drives me batty sometimes but overall,
he soothes my soul. We seem to be sort of building plans, but I try not to
think about it too much. I’m still afraid of losing this.
So yes, it’s been quite eventful. I’ve even had dear friends
and family visit me from other countries since my last post. It’s been wonderful,
but so fast-paced. I’m looking forward to things slowing down a bit. I need
some quiet time, some self-nurturing time. This most definitely includes
writing.
My Uncle Jimmy and Aunt Marlene came to visit from Australia.
I waited 35 years for this day.
My beloved Christina from Germany!!! And Tyler from right here!
It’s been crazy around here. A lot is changing and I’m not
as good at keeping up on things as I was (which honestly wasn’t great then,
either). I’ve been hospitalized a couple of times. Thanksgiving, Christmas, and
New Year have come and gone. David Bowie died.
As I sit here, listening to the Starman’s last, really last
album, I identify with it so much. I don’t understand his meanings behind all
of his lyrics, but I can hear where the cancer is speaking through his last
masterpiece, and I have some of my own definitions floating in from it. I
decided a while back, just before Christmas, that this isn’t going to kill me.
It isn’t allowed to. Not like this.
This is my third battle with this beast and frankly, it’s
getting old. I have been accomplishing so little. I couldn’t figure out why
when the treatments are so much less harsh this time (one oral chemotherapy
medication. I get to keep my hair and everything), am I so very exhausted?
Today I finally figured it out. Before, I had help with everything. Now I’m
doing this as a single mom with a part time job, trying to keep attending Krav
Maga training (you know I’ll go nuts if I don’t), and managing a household,
phone calls, appointments, bills, car problems. I’m so tired…
…but I’m not giving up.
Of course I’m not relying on chemo alone. It’s already been
stated that it won’t save my life, just prolong it a bit. Well then, I guess I’ll
just have to save myself. Through the love and assistance of amazing people, I
have been able to start taking Rick Simpson Oil (Phoenix Tears), and I’m still
attending Krav when I can. I’m slowly transitioning into dietary changes and
will be taking a blood test as soon as I can manage it, so that I can have my
diet optimized for my life and conditions.
I have Violet, and she is the future of the world. She is
the love of my life. She needs me and I need to be here for her. Jesse is by my
side most of the time, helping me through this. I have friends and family all
over the world, encouraging and supporting me. I’m also extraordinarily
stubborn. Don’t get me wrong, this is terrifying, and sadness and anger visit
regularly. Sometimes the days get jumbled and confused. Today nausea came for
me as I was driving to work and I had to come back home. My Monday is now
becoming another blur as I type in my bed, letting cannabis sooth the sickness.
But I’m here. I’m alive. Even when I have a tube stuck in my back, draining
fluid off of my left lung, even when I’m dizzy from medication, and even when I
can hardly eat, I’m alive. I’m fighting. I don’t know how not to.
Today is rough. Today is scary. But that’s today. I will
rest and recover and I will pick up my sword tomorrow.
