Learning to Live

We’re closing in on a year and a half since my fateful diagnosis. Many things have changed since that day, as would be expected. The specifics of the changes, however, are not all going as I would have anticipated. Of course, there was the initial shock, rage, despair, what-have-you. Then I began to plan my treatment and how I wanted to handle my life as someone with an invisible timer ticking away above my head.  What was I going to do with “The time I have left?” How was I going to live with “incurable” cancer, and what was going to become of my daughter whose father is living in a health crisis as well?

That was the beginning. That was a mindset quite different from the one I have now. I’ve changed, because you can’t have that kind of bomb dropped on you without becoming drastically different in a lot of ways. I don’t see things the way I did in the beginning. I no longer see this as “terminal.” Many would say that makes me naïve or deluded, but they have no clue what the universe looks like from my angle. They don’t have my perspective.

In the beginning, I was looking for ways to cope. I joined a couple of support groups on Facebook. I shared what was happening openly, as I do with almost everything. I planned to remain at my job for as long as I could work, and I did stay there for a few months. I talked about “quality of life” and how I wanted to spend the time I had. I talked about not knowing how much there was left for me. It was all so bitter and bleak. It was all about dying and death. It was about giving up. It was about accepting my fate as opposed to chasing my destiny.

Well, I grew tired of “fate” rather quickly. All the sadness, death, and pain tasted so sour, I couldn’t keep swallowing it. I just couldn’t do “dying” anymore. I began to research and read. I began to think and ask questions. Since then, I have been learning more and more about how this doesn’t have to kill me and even if it does, it doesn’t have to be for a very very long time. I could easily live another twenty years or so with this, and Hell…I might even be able to eliminate it permanently. So many stories have come my way about people who have beaten the odds and healed from what they were told was not curable. I’ve been learning about alternative treatments and lifestyle changes. Above all, I’ve been learning about the depth and persistence of my own will. And that is what it boils down to: my will.

I’m not interested in dying. Not at this time, and not before I see Violet well into adulthood. There are things I want to do, places I want to see, experiences I want to get lost in. I just turned forty, and I feel like my life is just beginning. There’s a future out there that I want, and I’m going for it. I’ve been slowly implementing lifestyle changes, starting with my diet. I’m not quite that good at it yet, but I’m working on it. I take Rick Simpson Oil twice a day, and I’m always looking at new ideas. The most important part is that I’ve been changing the way I think. I’m shutting down what wants to shut me down. I’m taking words like “terminal”, “No cure,” and “dying” out of my vocabulary. See, that’s the thing. There ARE people who beat this. We just don’t hear of them as often because they aren’t nearly as common as the ones who don’t make it. Most people who are told they have an incurable disease just accept it. My brother accepted it and we lost him at the age of twenty-four. So many people hear that they are going to die, and it feels like they immediately rush right toward it, even though it’s something they dread.

I had to leave the support groups because it felt like that’s all the women in there would talk about. They would discuss “how much time” they had left and talked so much about dying. I couldn’t stomach it. I couldn’t swallow all that despair. I honestly do not believe that I’m dying. I do not believe that I have a terminal illness. Am I chronically ill? Sure, I can deal with that. I’ve been in and out of the hospital so much it would make your head spin. Yes, I’m sick, but that’s just right now. As I said, I am not interested in dying and I’m even less interested in letting others dictate the outcome, including my oncologist (even though I love her to bits). There are way too many people who seem to insist on referring to me as “terminally ill” or “dying” and it is not sitting well with me. Perhaps I’m being overly sensitive about it, but when it happens, I just find myself filling up with rage. I know it’s never meant to be hurtful and it comes from good people, but I can’t help feeling like I’m being rushed toward death by people who keep trying to put nails in my coffin with their words. I feel like they’re giving up on me.

If you’re one of those people and you’re reading this, I love you, but please...STOP. Stop calling me terminal. Stop seeing me as a victim wasting away. Stop putting nails in my coffin. Even if you truly believe that’s where I’m headed, I need you to understand that I don’t believe it and I don’t want to live like I’m dying. Those kinds of words do not help me at all. They make me feel like a living ghost in your life and that’s not what I want to be. I’m here. I’m alive. I’m working toward a future. I’ve made a contingency plan for Violet because no matter what, it would be irresponsible not to, but that’s as far as I’m letting the whole death business go.

I’m not here to die. I’m here to live, and the truth is, NO ONE has any idea how much time we have left. I’ve often said that I could be hit by a bus tomorrow, but I’m not going through every day expecting to become street pizza. I’m not dwelling on it so, why are you? I know I’m ill. I don’t need to be reminded. I have daily pain, exhaustion, and regular sickness to remind me of that. I don’t want to focus on that. I want to focus on the good. I want to raise my daughter. I want to go back to Krav Maga (which I’m hoping to do soon). I’m almost done earning my associate’s degree at Clark College and I want to go back and finish it. Maybe I’ll even go chasing my bachelor’s or higher. I haven’t decided yet. What I am learning from this is not how to bow out gracefully. I’m finally and honestly learning how to LIVE. Now, more than ever, I don’t have an excuse not to. Why would I want to waste it with thoughts of my demise? That just makes no sense.  

So please, if you love me, stop telling people that I’m dying. Stop calling me terminal. We all make our exit at some point and none of us knows when that will be. Let’s not waste any of it by dwelling on death. Now is the time to really and truly live.

Enjoying the Journey

To say I’ve become inconsistent with my writing would be an understatement. So much of my timeline is a blur these days. Perhaps that’s cause to write more. I would like a clear picture to look back on. As usual, there have been changes. Some of them quite large.

It’s been a nice stretch out of the hospital. The capecitabean (oral chemotherapy I was on) stopped working. I chose an intravenous method which has rendered me bald, once again. The day after my fourth cycle of this new drug, I was informed that my tumor marker had been knocked back over 50%...FIFTY PERCENT!!! That is amazing. That is huge! It has me living in possibility and gratitude! It has me planning for what I want the future to be.

We financed a car today. It’s a 2015 Volkswagen Passat. Gorgeous deep, sparkly gray. We had been hoping to avoid car payments, as our finances have been frightening as of late, and we were doubting anyone would work with us anyway. However, Jesse now has a little income, and my credit score has been going up bit by bit. We needed a reliable car, especially after my Taurus died a few days ago, I’m talking not worth the cost or trouble in repairs, two-ton paperweight. Jesse’s Jeep was in bad enough shape that fixing it was also going to cost more than we were prepared to spend. Fortunately, it had trade-in value, and Ron Tonkin was willing to work with us. Boom! Car. We drove it home today. It was certainly a bizarre experience. We walked in, were greeted kindly, and things really looked grim. I even puked during the test drive…into an empty coffee cup. Imagine my surprise when we qualified for a car with payments we can manage! Don’t get me wrong, I am beyond the realm of cautious. Jesse and I are both a little squeamish about it. It had been nice to pay off the Taurus and have no car payments for a couple of years. Still, this car is already a tremendous improvement to our life. It’s safe, it’s in fantastic shape, I could go on. It’s nice. After all we’ve been through, we deserve it.

It’s been becoming apparent to me that I’m living in what feels like a completely different realm of existence from those surrounding me. Here I am, with this serious illness, I just turned 40 (oh yes, that’s a thing that happened…February 6^th. I’m 40 now), I have an ex-husband, and a daughter. Why do I feel like my life is just beginning, sometimes? It’s like everything has been gearing me up for what’s happening now, or what’s soon to happen. I can’t quite describe it. I feel it, like light managing to peer down at you when you’re beneath the ocean. It’s that sliver, that crack, that flash of color that paints a sudden, possible future. The things I want seem closer now, and what’s better, is that I already have so many things I wanted that I can now be grateful for. Is it life with my wonderful Jesse that’s doing this to me? Is it the fountain of smiles and laughter, and beauty, that is my sacred, sacred daughter? It’s worth it. Everything has been worth it. It’s not perfect. In fact, it’s far from perfect, but it’s good. I have reasons to be happy and they are not getting lost on me as they once were. It’s fantastic and impossible to recount all the things I’ve learned and all the secret glimpses I’ve gotten of the universe. And I do see a future. I really do. 

Finding Focus

This time I came prepared!

Another trip to the hospital, via ambulance. This trip, I’m staying the night for observation. The pain in my esophagus only just subsided recently, and I was elated to see it go! That was some of the most intense and difficult pain I have experienced in my life. For a month, everything I ate or drank was like swallowing broken glass. Even with heavy narcotics and lidocaine, it was pure torture. I reached the point of not being able to eat more than one meal a day, and that was usually eaten slowly over a couple of hours. Almost every swallow had me pounding the wall or furniture with the side of my fist. I lost weight, and obviously Krav was out. Now that it has passed, I’m dealing with a strange and crazy sort of pain on my left side, stretching to my back and sometimes my chest and abdomen. We’re not sure what’s causing it, so here I am. Since my lengthy stay here in October, I have had to deal with some intense, continuous pain of one sort or another with only a couple of fleeting breaks.

I have been working very hard at changing the way I think; using positive thoughts, energy, and motivation to better my relationship with myself as well as work more harmoniously with the laws of the universe. The Law of Attraction states that what you focus on is what you get, whether it’s something you want or not. Now, this means practicing mindfulness with our thoughts and sticking to language and ideas that promote and bring about the things you want. It is also very important to practice daily gratitude. I’ve been getting rather good at it, except when the pain overwhelms me. That is where I’m struggling. Of course, it’s perfectly normal and okay to have a bad day once in a while, and as important as practicing positive ways of thinking and being is, allowing for occasional sadness, anger, discomfort, or even a healthy dose of self-pity once in a while are acceptable and important. However, it is vital not to dwell in those places. It is important to place focus on the positives and the wants over the negatives and don’t wants. We’ve all known that person who complains about everything all the time. And what typically happens to them? They keep getting what they complain about and then some. It’s a vicious cycle that continuously feeds itself and I’ve been stuck in it on more than one occasion. Many people would not blame me at all for being miserable and negative considering my current circumstances and the horrendous traumas leading to this point. But that’s not how I want to live or feel; not anymore.

My current situation puts me in an odd spot with my studies and practices concerning the Law of Attraction. I have already experienced a massive positive shift in my life, just by practicing daily gratitude and setting up positive intentions for each day. However, the longer I live in such severe physical pain, the more difficult it has become to focus on the positive. How do you focus on positive over pain when it is right there, forcing your body to feel it every day? How do you take the focus and energy away from something that is so intensely pervasive? I am not a wimp. I have an extremely high pain tolerance by this point, and there have been more times than I can count as of late, in which the pain had me crumpled in a ball, sobbing desperately for a break. I know I can get past this, but how do I practice gratitude when I’m suffering so? Don’t get me wrong, I still do my best. I still look at and think about the things I’m grateful for, but how do I cut off the pain’s energy supply? Am I just bringing more to me by letting it get to me? I’m so new to all of this. I know there’s an answer and a way to do this. I just hope I find it soon.

I suppose, though, the most positive thing I can take from all this pain is that I now know without a doubt, that I am one tough motherfucker. Growing up as a very shy, strange child, an “Ugly Duckling” if you will, and a meek one at that, there were two things I frequently focused on and asked the universe for. I always wanted to be beautiful and I always wanted to be strong. The beauty part is subjective where others are concerned, but I do finally see my own beauty and it’s taken my whole life. I am also strong. I may not be the strongest in the world, but I do know that I have more strength than most, and I’ve earned it. I’m not talking physical strength so much as strength of psyche and of spirit. Do I crumble at times? Oh Hell yes! I also insanely explode once in a blue moon. That’s okay, though. I believe that sometimes falling apart is the only way to build something better. So now that I’ve crumbled again, how do I most effectively use my focus? I hope the universe provides me with an answer soon. Until then, I’ll just keep trying and falling until eventually I’ll get that whole flying thing down. Then just watch…