The Way to Life

“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 want to live.

I want to live.

I need to find a way to live.

Unwanted Thoughts

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.

That I Would Be Good...

Cuddling with Violet on one of my "down days"

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.

Phoenix Spark

Jesse thinks you're number one!!!

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!

Just before Iron Maiden. Yes, it happened!

I'm not short. He's really tall.

How I feel after I Krav

English Evergreens

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.  

Photo by Jesse Lanier

The Real Thing

Something happened to me when I was told I was dying. Actually I wasn’t told in those words exactly. The words “death” and “dying” weren’t used at all. “Metastasized” and “no cure” have been used along with “average life-expectancy” …but not DYING. This coming Friday will mark two weeks since I heard that news. Today is one week since I got out of the hospital after being rushed by ambulance because I couldn’t breathe and my blood pressure had plummeted. Today is the day I followed up with my oncologist to discuss the findings of the scans and tests run whilst enjoying my hospital stay. Today I learned what places it has chosen to latch onto and start eating me: spine, pelvis, left lung, liver, and skull.

Stage 4.

Metastatic.

It’s in my bones.

According to Western Medicine, I’m fucked. Do you know what the average lifespan of someone with stage 4 metastatic breast cancer is? Four years. Yes, four. Now let’s be clear that this is the “average.” Well kids, I’m not fucking average. Never have been. While it’s true that for the vast majority of my life I felt that I was below average, I have learned something about where we place ourselves in regard to that spectrum. We tend to restrict ourselves to “above” or “below”. How about just stepping off of that spectrum completely? How about instead of “above” or “below” we choose “not?” I am NOT average, not by a long-shot. So I am not accepting averages here. I’m not accepting Western Medicine’s cold dismissal of this vessel when the spirit inside it is screaming to prove it wrong, to smash this monster, to raise my beautiful daughter.

A dark summer it was, the darkest. Autumn barely whispered and winter is already knocking at my windowpane. So much of the year was spent feeling like I was dying, and honestly, wanting to. I can’t help thinking of stories I’ve heard about people who earnestly tried committing suicide only to have it fail somehow and how they instantly regretted the choice they had made once it was “too late.” I wonder if every person who kills themselves has that happen. My case definitely isn’t suicide, but I can’t lie. I was tired of living. I wanted to close my eyes and never have to open them again. The only thing keeping me on this plane was my precious and amazing child. Now that Death is making eyes at me for very, very real this time, I am absolutely not interested. I want to live. I want to be. I want to become. I’ve got shit to do and like Hell I’m just going to leave this plane when there is a little girl who needs me.

I’m angry. I’m fucking livid. After all the horrors and traumas that breast cancer put me through, after my marriage crumbled, after scraping at crumbs to start pulling some sort of life together, after changing and becoming stronger than I’ve ever been only to get knocked down by one gut-wrenching heartache after another this year, this…THIS is what I’m presented with??? No. Fuck this. No. Not interested. I will find a way. If this thing wants to kill me, fine. But not before I raise Violet. Not before I create a life I can be proud of. Okay, so it didn’t go the way I wanted. That stable life with a caring partner, that fulfilling career choice, that crusade against all things unjust and unsavory, that legacy I wanted to build; none of it seems to be possible now. No walk down the aisle in a beautiful gown to greet the love of my life. No impressive college degrees. I have to let go of those wants because all of my energy now is devoted to living. It’s devoted to seeing my child into adulthood. I will hunt down and utilize all alternative treatments I can get my hands on. I will summon all of my will. I will live.

As I said…I’m fucking livid. But the anger is turning into something good. It’s turning into bloodlust. It’s turning into determination. If there is one thing I’ve learned for certain about myself over the last couple of years, it’s that I’m a fighter. No matter how long I spend recovering from a devastating blow, I get up. I always get up. 

It Can't Kill You if You Dissect it First

Since the day I stood over my brother’s body, awash with wonder and grief, I have marveled at the power of pain. Physical pain…intense physical pain can rearrange a person’s psyche like you wouldn’t believe. And I have known physical pain. I have known it in ways that even the most skilled wordsmith could not do any justice to. Emotional pain however, deep, all-encompassing emotional pain…now that is something to behold.

It is no secret that the year thus far has been wrought with trials and tragedies. Myself and people all around me have been suffering in a variety of ways. It has taken me closer to the edge of my limits than I had ever thought possible. Every time I seem to be turning a corner, following a promise uttered or a spark of light, I am met with that shadowy despair once again. Its insanity clutches at me and I feel myself clawing against rage and hopelessness. So on evenings like this, when my cheeks have felt like flowing liquid to the touch and my brow has been creased with all the tension of the strongest vice until a friend rescues me with coffee and a forbidden cigarette to bring me back into myself, I can take a step back for just a moment. I can look. I can become the scientist.

I am a great scientist when studying my own emotional pain and mental torment. Even as it agonizingly rips apart my insides, I am fascinated. The madness and sheer enormity of it are breathtaking in a way that is almost art. I am surviving this and I have been surviving it for months on end. But is there an end? Logic dictates that there must be but the when and how are lost to me at this time. I am putting on my mad scientist coat and I am dusting off my beakers and boilers to see what this beast can do; to see the colors it paints within me. And oh how sometimes I shake! Isn’t it marvelous what this thing can do? Isn’t it poetry? Will it kill me? No, though I am sure it has tried. No, it will not kill me. It can’t kill me if I’m cutting it to pieces and dissecting its every corner and shape. It can’t kill me even when it has me tricked into feeling like I’m dying. For you see, I am the mad scientist, and I run this show…even when it’s running away with me.