Down Again

In an ideal world I would piece together more thoughtful writings, refine them, post them, pretend I have any adequacy at writing. There would be an opener, paragraphs detailing thoughts or exploring, explaining, any theory, a closer, then some little blurb at the end that would wrap it all up. A satisfying end to something meaningful.

This isn’t that.

It’s never relevant, move on.

I’ve taken half a pill of anxiety med again — the usual dose for me — and I’m left to realize I need to refill this since it won’t last me til April. In some way I’m left to admit that partaking in it tonight is a means to reduce some strong feelings focused around my depression, stress…and anxiety, as I am weak, it is much worse than I had assumed in the past, and it will sit on me soon. Regardless, if my already limited ability to make sense disappears shortly, you know why.

The topics I want to write, vent, about are difficult. I have tried this numerous times only to give up. Given that Medium saves these things in drafts, it seems like I’ll have to go through and delete them over time. Or use them, but probably delete.

One is my inherent loneliness and longing, but I refuse. I haven’t written down my feelings on it to its deepest extent, I haven’t spoken about it, and I tend to ignore it. Denial is strong in this house when it comes to uncomfortable things, and even with my attempts to break the familial chains of emotional unawareness, sometimes I find my own way onto the path of denial as well. Pretend it is not there. Do not speak it into being. It is too uncomfortable, too painful.

The other…has been a matter of frustration for about a year now.

I feel as though I’ve mentioned the cancer situation a number of times, but it’s possible I haven’t. How my grandma’s health was failing, slowly, but progressively. Symptoms mimicking those of a stroke, but at a pace that wouldn’t make sense. A doctor somewhere who said something akin to “If you can’t tell me what’s wrong, I can’t help you,” then another, much more intuitive, prime example of what I expect from doctors, who saw everything and immediately called for a blood test, didn’t release the family, sent them over to the hospital the moment that test was finished. It was lung cancer, but something that had metastasized somewhat. I do not know the mechanics behind it crossing the barrier into the brain to create tumors, and I am for some reason under the impression that the tumors themselves were benign. It was the tumors causing every symptom we saw though.

She had lost some mobility, primarily on her right side. Awareness of that side of her body, sight from that eye, etc, all went in time, leading into one memory that appeared awkward but also made me angry. Some family was visiting, I think for my Great Grandma’s funeral, from Canada and we had gone to a restaurant. My Grandma dropped her fork on the floor and bent down to pick it up, but she was very close to one of the other family members and was decidedly in his space as she just didn’t really register how close they were and the space of his that she was in. The anger came in with it being an ‘awkward’ situation instead of recognition that she’d dropped a utensil and could have used a hand from someone whose body wasn’t halfway into another universe.

This was during the time that other issues had taken hold. Her memory was shot, both short and long, but not significantly enough to be that much of an issue. It was just something of note, and sometimes made small situations alarming — what was I cooking, what did I go to the kitchen to get, I am looking for this ingredient but can’t identify anything about it. More obviously, she began to forget words. Easy enough to find synonyms, or explaining the word in question to reach it. This progressed to her being unable to put the words she couldn’t remember into sentences at all. At one point we were at an impasse where the most we could do was ask yes or no questions, in some cases a nonverbal answer was all we could get.

Not knowing what it was, and seeing this dissolution of mental and physical acuity was the most traumatic time thus far in this adventure.

I feel like one of these pistons.

All of these symptoms were a result of a pretty huge brain tumor that had developed. The good doctor saw, was alarmed, sent her off to the hospital, and we got the diagnoses. Lung cancer. A lifetime of smoking can sometimes do that, really.

An image I remember around this time that still tugs at my heart was visiting her in the hospital. Apparently it was the same building I was born in, so I had no recollection of it, but it seemed an odd thing to recognize that I had been there before. It was fairly quiet, late in the evening, and all three of us were tucked away in a nice, albeit dark, corner room with a great view out the window of the neighboring trees and the road. Grandma’s favorite show was on — Two and a Half Men — and she seemed very happy that I had showed up to visit for a bit. An unfiltered smile, one of the greatest expressions of emotion I think I’ve seen from her for a while. Tearing up just thinking about it. It really was a highlighted moment amidst the trauma. I know it is going to stick with me for a while.

With having diagnoses, and the medical staff in the area who are overwhelmingly good, we had information and a path to move forward. Treatment, some set down by an amazing doctor that were newer, but proving to be very effective. In a way, it was a case study for her, and I hope her research has proven well although we stopped seeing her. Something about the distance I guess, although it is a distance I would personally go for someone who did so well for me. Odd enough then that, while the oncology section had moved to a new building nearby that one, that I was back in that building again as my psychologist’s office was there. Across the hall, but very close, very weird to walk the same halls again, very uncomfortable to have to take elevators.

I hate elevators.

Aside from immunotherapy was a round of steroids, which…well, my grandma didn’t like, which was fine. She has something of a Dr Jekyll and Mr Hyde thing to her, laying persistently under her surface. In past times it would be brought up through alcohol binges, and for some bizarre reason the Hyde parts would remember themselves. Hyde believes I killed one of the dogs — I didn’t.

Hyde was present during the deteriorating health of a much-beloved canine friend. A Canaan, he was tall, slender, fast, and strikingly beautiful. He was terrified of storms and stuck to me as if I would save him from them, even when I strongly desired to observe those storms as intimately as possible. He would sit, let me straddle him, and rev his ears up like he was a motorcycle. I was privileged in that way, as he hated his ears being touched. As a Canaan, he was one of the breeds that is very prone to degenerative myelopathy — a spinal disease that eats through it — and so his life was cut grossly short due to the disease progression. He could not walk well, but made his best efforts, and on that particular day she had let him outside, he made his way down the stairs, but his back legs gave out on the grass while he tried to do his bathroom things. Canaan was a big dog, although not particularly heavy, but even so he was a considerable weight for me. I encouraged him to get up, that I would help, but I told him I wasn’t going to carry him up the stairs. I didn’t know this at the time but Hyde was listening, possibly creeping out through a window.

In the end, I carried this feces covered dog up the stairs. There is a strength found when it is necessary, despite it being strenuous. My landing at the top of the stairs and inside the house was not particularly graceful, but I had not dragged him up those stairs, I picked him up and carried him. You scoop them under the shoulders/clavicle, and under the butt. I had a great deal of his feces on me too, but it didn’t matter.

When Hyde returned during another binge I heard those words repeated back to me, “I’m not going to carry you.” An accusation, sharp, painful, was made that I had killed him. In a fight this assertion was also made to my dad, that I had “killed (his) dog.” He knew I did not, but the words hurt me nonetheless. I loved that dog tremendously, and his life ending short still hurts me. Looking into our current dog’s eyes, comparing her markings to his, still strums the chords of my heart. Those same gorgeous, deep, loving brown eyes.

Anyway, alcohol was an opening to Hyde, but as I stated, the characters exist just under the surface. So, too, did steroids bring Hyde out. This was a strong Hyde, quick to anger without understanding of any reasoning. This was a scary Hyde that could not be subdued through the depressant action of alcohol, as there was no alcohol. Only steroids. Grandma’s want to move away from the steroid use was accepted by all in the house. Welcomed.

In the end the treatment of the brain tumor was done with the “gamma knife” procedure. This involves screwing a medieval helmet onto a person’s head and blasting the tumor with intensely focused radiation to murder the tumor, reduce its size. All sorts of fun stuff. Do yourself a favor and image search for “Gamma Knife Helmet.” Those receiving the treatment have taken and published many pictures of themselves smiling while inside it, because it truly is an absurd part of the technology.

When asked the next day how she felt, she said, “I have a headache.”

Yeah, me too.

Things reached a bit of a stasis over time. The first doctor and her treatment plan were both excellent and proving helpful. Someone came in to talk about exercise with my grandma to regain all of the mobility she’d lost from the tumor taking it away from her. She didn’t bother much with that, but for a bit she was healthier. Somewhat active. Capable. And while some lingering effects of the tumor leaving brain damage in its wake, she was mostly present in the world again.

Switching doctors and getting treatment closer to home ended up happening, and I was sad to say goodbye to the first doctor. I didn’t meet the guy in the middle, but I met the last, current, whatever, oncologist and adored her no-bullshit style. She was the one who hopped over from the building next door while Dad was in the hospital to pile on with more of the same the other doctors said to him — if you don’t stop you’re going to die. My respect for her is immeasurable.

Grandma made it clear she hated treatment, it was a matter of the stress of having to go, then the multiple hours of waiting around for “half an hour” of actual treatment. Still, it was maintaining her life as it was, with only a slow transition of mobility loss due to inactivity and atrophy. She was primarily present, mentally, and we made efforts to go out with regularity.

Then the five year day came. She was given a little bag, a nice card thanking her for being a patient for so long. The staff said, at that point, she was done. For the day. She was done for the day. But she heard what she wanted to hear, applied it to her hatred of the inconvenience and stress of treatment, and made it the reality that she was Done with treatment entirely. This was not true, and attempts to work with her and the system to get her back to it were made, but they went nowhere.

Ultimately, a person still has their autonomy. It is an entire trench of grey area as to what you can and can’t do from all sides. It is extremely nuanced, and any obvious solution doesn’t mean a thing when you factor in the unique circumstances of individuals, their preferences, wants, beliefs, etc.

I spent months feeling frustrated, with peaks and valleys within that frustration. It ended up culminating into my current, ongoing status.

While I don’t know what her job is exactly, we have had this healthcare worker, J, come to the house a few times. She’s loud — a quality I don’t really have — but caring. The first time she was here I heard some words that really stood out to me, J very bluntly stated that choosing not to resume treatment was going to hasten my grandma’s death. Later in the conversation, J added that it is ultimately my grandma’s choice, and that was all my grandma took from the conversation.

She heard what she wanted to hear when told she was done (for the day), and she heard what she wanted to hear when J told her she was going to die soon, but that she didn’t have to resume treatment if she did not want to.

I mentioned earlier the denial and emotional unawareness in this house. While some of these behaviors have been instilled in me, I do my best to fight them. Avoiding, denying, being emotionally detached… these are not helpful to living a fulfilling life, and with so little to account for myself, I will take what I can where I can, and I will do so with regards to being emotionally aware.

The irony of stating that after opening with how I took a dose of my medication to numb myself is not lost on me. I would, however, eventually like to sleep without staying in bed crying for hours. Use, not to ignore everything, but to keep myself healthy. Maybe I am just telling myself that.

The denial and lack of credence toward emotion manifests very strongly in this situation. I have left the room innumerable times the moment “well I was told that I didn’t have to keep going” starts to be spoken. I have very gently at most times prodded toward rehashing a discussion, like after J leaves. I have less gently laid out the reality in others. Regardless, it is truly maddening.

After J visited the first time, a hospice clinician, Ash, visited. I wasn’t sure I was welcome for this as I have been kept in the dark a lot on what has been happening — I don’t understand this since I retain the most information from these conversations, and I understand to some degree ‘medical jargon’ (actually plain words, but after getting into an argument with my dad over how “autonomy” is supposedly a fifty-cent word (it is not), sometimes everyone else here needs translations for multi-syllabic words. I know this sounds pretentious, and it is, but it is also fact). I stepped out into the living room with my dad, Ash, my grandma, and asked if I was welcome to sit into this conversation. Awkward, but fuck it. I was.

I recall Ash talking a little bit about hospice and palliative care, the goal of it being primarily comfort. Ash very gently put down the reality that life would be much shorter going this route, considering that immunotherapy is actually still an option. I believe her wording involved “going” rather than “dying.” Dad then chimed in to repeat what Ash said but less gently. In this moment I could see these words not connecting, a sort of blank, empty stare from my grandma showing that this information wasn’t really processing. I chimed in, stating much more bluntly that what this meant was that she would likely die within six months. Stick around for Christmas maybe. These words made it click, and together we agreed that pursuing treatment again would be the right option.

Things were a little different the next day, but it was only a matter of time before my grandma checked back into her own reality.

I think this is accurate.

Grandma’s reality is that: treatment doesn’t do anything and is a huge stressor and waste of time. It is uncomfortable, and pointless, and in fact the options for hospice and people coming into the house to do basic vital checks on her is the same. She has latched onto this idea that she was told she was done, and now everyone is lying about her not being done. Her reality is that she is done with treatment. All she has heard is that she has a choice, and she believes that that choice is the same regardless.

Her mental acuity is lacking. She is forgetful. And Jekyll and Hyde both still exist, but the surface level erodes often and we get moments of Hyde. Hyde doesn’t stay around very long anymore, but Hyde can’t be remembered long enough to do so. Hyde, however, is still there waiting to be challenged so that Hyde appears. While there is no physical fear of Hyde nowadays, causing trouble just to cause it seems unnecessary. Like reminding a dementia patient that their loved one has passed, it feels barbaric to press the conversation in some manner that is not accepted at all, but specifically not in any given moment.

J was by again earlier this week, and I was asked by Grandma to exist out in the living room with the two of them. J seamlessly included me into the conversation, although since we had no moment to talk individually, I left some of my concerns to the wayside. I am left wanting, needing an outlet, needing advice. After J left I talked to my grandma for a bit, and pushed to get a better understanding of where she was at with her thinking. She stated that the option of people coming to the house for whatever treatment was definitely better and if something was wrong they would notice.

I could not resist, and made it clear that something already is wrong. She has lung cancer, and it is killing her. She then expressed the belief that treatment wasn’t doing anything. And it was 3 hours worth of time for 30 minutes of actual treatment. And they stick you with things, taking what they want. There was no satisfying conclusion to this as Hyde was just behind her eyes, and I did not want to discuss things with Hyde.

It is exceptionally frustrating to be at this impasse of understanding. Grandma thinks she will be fine and will not accept that she is not fine. I cannot tell if this is willful denial or truly not understanding the repercussions. A person’s autonomy is theirs, and what I, or my dad, think is right doesn’t necessarily apply to a person who can, to some degree, still make those decisions. But is it making a decision when the information is filtered heavily by a colander of hearing what a person wants to? I just foresee her accepting hospice for the time being, then being surprised at some point in the future when nothing else can be done. How was she fine before, but suddenly is facing the end of her life? Something must be able to be done. But it will be too late.

I have no idea how to navigate any of this. I haven’t had any idea of how to navigate it, and when it became very clear that I needed to say something, and I did, only for it to turn around within a week… I am left at a loss again. I personally am in need of resources to hash this out, hash out my feelings and my hurt, my options. Sometimes I overthink and get lost in those thoughts, and an outside opinion would be helpful. If that opinion confirms that there is little I can do, I can accept that, but there is always the chance I am missing something.

And if I could make an appeal to, or with, emotion, I feel it would almost be easier. If I could word things the way I want to, I feel it would be easier. But I cannot do either.

The frustration does not end here, and any hopes of alleviating some of it by writing I’m finding were null. There is so much more I want to say, want to express the fine points and nuances of the mental barriers I am fighting against, but I just do not have the energy.

Her mobility is garbage. This could have been alleviated somewhat by continuing to stay active and partaking in the exercises given to her, but she exists within her realm of immobility. Her falling seems to be a daily occurrence, and while she’s bolder about being independent when I am around, Dad babies her immensely. She seems to revel in it with him. But it is different between us, and I am on daily duty.

I need help.

And I think I need to figure out some exercises to make picking her up off the floor a bit easier on both of us. She still insists on trying herself for a while.

Pervicacious family. Frustration. Pure fucking anguish that no one wants to admit to. All I can do now is sleep.

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Sheep Moth

Someone told me I was a good writer, so now I’m proving…something. Tend to one’s own flame, and do not extinguish the flames of others.